HER2 is a gene that can influence how a breast cancer behaves and how it might respond to a specific treatment. My biopsy was tested at my local hospital using the IHC test (ImmunoHistoChemistry) and they found that it was HER2 equivocal meaning that a positive or negative result could not be determined. According to Breastcancer.org, the results of this test can be classified as follows:
0 (negative)
1+ (also negative)
2+ (borderline)
3+ (positive — HER2 protein overexpression)
I was 1+ so for confirmation, the sample was then sent out to another hospital for the FISH test (Fluorescence In Situ Hybridization) to be performed as it is a more definitive test where the results can only be positive or negative. The results were negative so it was determined that I would not need Herceptin which is an antibody that targets the HER2 receptor.
The problem with this approach is that if a patient's results are 1+ or 2+, it means their cancer did have some form of HER2 overexpression but the hospital's guidelines say that is not enough to warrant getting Herceptin. My concern like many others is that if there are even just a few cells that could respond to Herceptin, why wouldn't you treat them? It is also possible that depending on where cells are located, the tissue from one area of a breast cancer can test HER2-negative and tissue from a different area can test HER2-positive.
This article goes along the same line of thinking and clearly states that "breast cancer tumors that are human epidermal growth factor receptor 2 (HER2)-negative can spontaneously flip, with populations of circulating HER2-positive cells, according to a new study." It goes on to say that "the ability of these two populations of tumor cells to convert back and forth highlights the importance of treating tumors with drugs that would simultaneously target both populations."
The good thing is that even though I did not qualify for Herceptin at home, the Hallwang clinic was able to target any HER2 positive cells with the use of a peptide vaccine. It is a subcutaneous injection that is given in the abdomen for 5 days then requires a boost every few months. For anyone that is reading this and had a result of 1+ or 2+ on the IHC test, it might be something worth looking into or asking your doctor about. There is no harm in questioning the "standard of care"!
Tuesday, 13 December 2016
Saturday, 15 October 2016
Anti PD-1 Immunotherapy
PD-1 seems to be in the news a lot lately as a target for immunotherapy. Anti PD-1 therapies known as Pembrolizumab or Keytruda are able to block the programmed cell death protein that keeps the immune system from going after cancer cells. Before visiting the Hallwang clinic, they sent my tumor tissue to a lab and it was tested for EpCAM, MUC-1, PD-1 and several other tumor associated antigens that can be targeted with different therapies that are not available in Canada right now. Eventually, I believe these tests will be done at diagnosis the same way ER, PR and HER2 are tested today but it will take time.
Right now Keytruda is approved by the FDA (Food and Drug Administration) for malignant melanoma and non-small-cell lung cancer but is just starting to be used in clinical trials for breast cancer. Luckily those like me that don't qualify for the clinical trials or have 10 years to wait around for it to be approved as a first line therapy for breast cancer, have other options. At the Hallwang clinic they are able to use Keytruda to treat women that are PD-1 positive. Unfortunately it is costly but worth it in my opinion given that breast cancers positive for PD-1 carry a worse prognosis.
In many cancers, PD-1 is over expressed on tumor cells and tumor-infiltrating immune cells. When these join together, they form a biochemical "shield" protecting tumor cells from being destroyed by the immune system. Tumors can co-opt PD-1 to their own advantage to fly below the radar of the immune system. By using a blocking agent against PD-1, we can interrupt that shield protecting the tumor from immune destruction.
If you have been recently diagnosed, you may want to ask your doctor about whether they can test for PD-1. It has been suggested that anti PD-1 immunotherapies can be especially effective in triple negative breast cancer because ER-negative breast cancers typically have a higher density of tumor infiltrating lymphocytes than their ER-positive counterparts. TNBCs also have a higher mutational load compared with their ER-positive counterparts, and have been proposed as a mechanism for increased immunogenicity.
Right now Keytruda is approved by the FDA (Food and Drug Administration) for malignant melanoma and non-small-cell lung cancer but is just starting to be used in clinical trials for breast cancer. Luckily those like me that don't qualify for the clinical trials or have 10 years to wait around for it to be approved as a first line therapy for breast cancer, have other options. At the Hallwang clinic they are able to use Keytruda to treat women that are PD-1 positive. Unfortunately it is costly but worth it in my opinion given that breast cancers positive for PD-1 carry a worse prognosis.
In many cancers, PD-1 is over expressed on tumor cells and tumor-infiltrating immune cells. When these join together, they form a biochemical "shield" protecting tumor cells from being destroyed by the immune system. Tumors can co-opt PD-1 to their own advantage to fly below the radar of the immune system. By using a blocking agent against PD-1, we can interrupt that shield protecting the tumor from immune destruction.
If you have been recently diagnosed, you may want to ask your doctor about whether they can test for PD-1. It has been suggested that anti PD-1 immunotherapies can be especially effective in triple negative breast cancer because ER-negative breast cancers typically have a higher density of tumor infiltrating lymphocytes than their ER-positive counterparts. TNBCs also have a higher mutational load compared with their ER-positive counterparts, and have been proposed as a mechanism for increased immunogenicity.
Monday, 19 September 2016
Hyperthermia
While in Germany, I tried whole body hyperthermia. Hyperthermia is a cancer treatment where the whole body is heated to a high enough temperature that it can damage or kill cancer cells. The maximum temperature used is dependent on the clinic - at Hallwang it was 40 degrees celsius or 104 degrees fahrenheit. From what I understand, other clinics might go to 43 degrees celsius but a sedative is used so the patient is more or less asleep for the procedure. At Hallwang, you are wide awake for the whole thing which scared the crap out of me at first.
To start, you sit in a hot bath to gradually bring up your temperature. Then, once it is high enough, you move into a tent with heat lamps that reminded me of an incubator. Thank god your head pops out the top so it is not affected by the heat. The nurse stayed in the room the whole time, monitoring my heat rate and blood pressure every 15 minutes or so. They also give you fluids to replace the massive amounts that you are losing by sweating profusely.
After spending 45 minutes to an hour in the incubator, the sides are folded on top of you to make a sort of body bag which you stay wrapped in for another hour. Now that I am typing this, the whole process sounds like some sort of cruel and unusual torture but really the worst part of it was my anxiety over needing to pee after all of these fluids had been pumped into me. Luckily I was able to hold it but the nurse did offer to put a diaper on me if needed, haha.
Unfortunately whole body hyperthermia is not available in Canada. Some Naturopaths or alternative medicine clinics might offer local hyperthermia which is done with a machine that treats a specific area. This can be effective on a tumor but if you are trying to treat circulating tumor cells like I am, whole body hyperthermia is the only option. I found that a lot of people at the clinic had not tried it but it is something I would definitely recommend. Call me weird but I actually enjoyed it...maybe not the treatment itself but the feeling you have after is unreal, like you have just sweat out every single toxin in your body.
Many people go to clinics in Germany for this treatment alone or it can be even more effective when combined with other therapies. This video gives a good overview if you are interested: https://www.youtube.com/watch?v=qGzXCS-UbVo
To start, you sit in a hot bath to gradually bring up your temperature. Then, once it is high enough, you move into a tent with heat lamps that reminded me of an incubator. Thank god your head pops out the top so it is not affected by the heat. The nurse stayed in the room the whole time, monitoring my heat rate and blood pressure every 15 minutes or so. They also give you fluids to replace the massive amounts that you are losing by sweating profusely.
After spending 45 minutes to an hour in the incubator, the sides are folded on top of you to make a sort of body bag which you stay wrapped in for another hour. Now that I am typing this, the whole process sounds like some sort of cruel and unusual torture but really the worst part of it was my anxiety over needing to pee after all of these fluids had been pumped into me. Luckily I was able to hold it but the nurse did offer to put a diaper on me if needed, haha.
Unfortunately whole body hyperthermia is not available in Canada. Some Naturopaths or alternative medicine clinics might offer local hyperthermia which is done with a machine that treats a specific area. This can be effective on a tumor but if you are trying to treat circulating tumor cells like I am, whole body hyperthermia is the only option. I found that a lot of people at the clinic had not tried it but it is something I would definitely recommend. Call me weird but I actually enjoyed it...maybe not the treatment itself but the feeling you have after is unreal, like you have just sweat out every single toxin in your body.
Many people go to clinics in Germany for this treatment alone or it can be even more effective when combined with other therapies. This video gives a good overview if you are interested: https://www.youtube.com/watch?v=qGzXCS-UbVo
Friday, 16 September 2016
Hallwang
The time I spent at Hallwang tested me both physically and mentally. First of all, it is not an easy place to get to from Canada. A direct flight will take you into Frankfurt or a stop-over will get you to Stuttgart which is a bit closer. The location of Hallwang is beautiful...in the black forest, surrounded by big trees, nature and a tiny town. A 10 minute walk will take you to to a 2.5 km barefoot trail through forest and meadow which is truly spectacular. Unfortunately there wasn't much time for hiking or day trips a) because some of the treatments made me feel very ill and b) you are at the clinic every day for at least 3-4 hours.
We stayed in a town called Freudenstadt which is about 12 minutes away by car. It seemed as though most patients stayed at the clinic, however, that is much more expensive. Although the food is very good at Hallwang, I also liked the option of going out to different restaurants for dinner every night. This meant we had to rent a car but it was relatively cheap and allowed some flexibility.
The first day consisted of a quick tour, physical exam with one of the Oncologists, a blood draw that included 20 vials, and some infusions for liver and kidney support, antioxidents and vitamin C. It doesn't take long to settle into the regular routine which for me included showing up around 9am, having blood drawn, getting a concoction of infusions to support my immune system and then either an immunotherapy, hyperthermia or ozone therapy in the afternoon.
They are very flexible about what time you start and what treatments you have. On the first day I expected to receive a schedule showing what I would be doing for the duration of my stay but I came to learn that there are no set schedules at Hallwang. I like a plan so I ended up making my own little calendar to keep track of everything. This also ensured that I was able to fit everything in as some treatments like hyperthermia are only available on certain days.
One thing I quickly noticed is that the staff at Hallwang are some of the most caring people I have met. There was no rushing you out of the room because they have other patients to see, all of my questions were welcome and the Oncologists provided thoughtful answers, when I called with a problem I was not re-routed to a call centre but rather a nurse answered right away. It also does not have a hospital-like feel. To be honest, I expected to see a lot of really sick people who have run out of options in their home country walking around in hospital gowns. It was not like that at all! All of the patients were so open and willing to share their stories about how thankful they were to have found such an amazing place that gives hope to so many people. I am certainly thankful I found it!
We stayed in a town called Freudenstadt which is about 12 minutes away by car. It seemed as though most patients stayed at the clinic, however, that is much more expensive. Although the food is very good at Hallwang, I also liked the option of going out to different restaurants for dinner every night. This meant we had to rent a car but it was relatively cheap and allowed some flexibility.
The first day consisted of a quick tour, physical exam with one of the Oncologists, a blood draw that included 20 vials, and some infusions for liver and kidney support, antioxidents and vitamin C. It doesn't take long to settle into the regular routine which for me included showing up around 9am, having blood drawn, getting a concoction of infusions to support my immune system and then either an immunotherapy, hyperthermia or ozone therapy in the afternoon.
They are very flexible about what time you start and what treatments you have. On the first day I expected to receive a schedule showing what I would be doing for the duration of my stay but I came to learn that there are no set schedules at Hallwang. I like a plan so I ended up making my own little calendar to keep track of everything. This also ensured that I was able to fit everything in as some treatments like hyperthermia are only available on certain days.
One thing I quickly noticed is that the staff at Hallwang are some of the most caring people I have met. There was no rushing you out of the room because they have other patients to see, all of my questions were welcome and the Oncologists provided thoughtful answers, when I called with a problem I was not re-routed to a call centre but rather a nurse answered right away. It also does not have a hospital-like feel. To be honest, I expected to see a lot of really sick people who have run out of options in their home country walking around in hospital gowns. It was not like that at all! All of the patients were so open and willing to share their stories about how thankful they were to have found such an amazing place that gives hope to so many people. I am certainly thankful I found it!
Saturday, 6 August 2016
Germany - Here I Come
After many hours online and speaking with various medical professionals, I have made the decision to seek further treatment in Germany at the Hallwang clinic. This was not an easy decision by any means but one I felt was necessary for a few reasons:
- My latest circulating tumor cell and Oncoblot test results were less than stellar
- The natural supplements and therapies I have been doing at home are proving to not be enough
- A recent study presented at the 2015 San Antonio Breast Cancer Symposium showed that adding capecitabine to adjuvant therapy reduced the risk of disease recurrence by 30% and prolonged survival by 40% for patients with residual breast cancer following neoadjuvant chemotherapy and surgery. Although it sounded like a promising alternative for me at first, I chose not to pursue capecitabine for several reasons:
- Participants in the study were Japanese and Korean and according to my Oncologist, their genetic make-up is different so they may metabolize capecitabine differently leading to a potentially different response. Although the results of the study are very encouraging, it is also just one study and more need to be performed.
- My Oncologist would not prescribe it for me for the reasons above which would have left me buying "black market" capecitabine...an option I was not thrilled by.
- Even though it is "lighter" than AC-T, it is still chemo and does have side effects and toxicities to boot.
Monday, 25 July 2016
European Cancer Clinics
If you are looking for information about the European cancer clinics, I recommend the Inspire website. Although there are a lot of clinics in Europe that offer treatments not available in Canada, based on reviews posted by Inspire members, it seemed that Herzog and Hallwang had the most success. Other clinics that I have heard about include Kleef in Austria which I didn't investigate based on some mixed reviews online and Paracelsus in Switzerland which seemed to focus more on alternative treatment and less on immunotherapies which is what I was interested in.
I started by contacting the two German clinics by e-mail and giving them a summary of why I was interested in visiting the clinic along with my medical history. I heard back from both within 24 hours which was very impressive considering I have made urgent calls to my Oncologist at home and it takes longer than that to get a response.
In terms of treatment recommendations, both offered whole body hyperthermia and complimentary treatments to support the immune system but I found that Herzog was much more focused on chemotherapy. Right away they recommended a moderate dose of chemo which made me nervous given that I have already been down that route and it was not as effective as it should have been given that blood tests show I still have cancer cells floating around in my body. On the other hand, it also seemed like an aggressive course of treatment given that I am in remission, meaning that there are no signs of cancer on my PET/CT scan.
It's so hard to be in this grey zone where circulating tumor cell tests indicate that malignant cancer cells are still present but whatever is happening in my body is microscopic and too small to be detected on imaging. Having said that, it could always be worse and I am thankful that whatever is happening was caught in this "grey zone" and not when it is potentially too late.
In terms of cost, Herzog was around 30,000 EUR for 3 weeks of treatment which I understand is the typical length of time you can expect for your first stay at one of these clinics. Luckily for me, my parents have offered to pay for the treatment so cost did not factor into my decision. The main things I was looking for were treatments that were evidence based, supported my immune system, had been successful for others with triple negative breast cancer.
After contacting Hallwang, I found that they met that criteria. Their treatment recommendation did not include chemotherapy but instead they wanted to test my tumor tissue for tumor associated antigens which would help determine which immunotherapies would be successful. This personalized approach made the most sense to me but unfortunately it comes at a cost. The testing alone was 3,800 EUR which is about $5,500 CAD. A number of different immunotherapies were available based on the results of the screening and when you add in the complimentary treatments, bloodwork and daily rate, they came to around 50,000 EUR for 3 weeks of treatment.
The question I'm sure some people would ask is why spend all of this money when for all intents and purposes, I am cured? I have done everything Western medicine had to offer, my last scan was clear and I have no physical symptoms. This would be a difficult decision for many but seemed pretty clear to me. My decision to pursue additional treatment was based partly on intuition and the fact that all of my research had led me down this path for a reason but also the fear of this cancer coming back. The fact that I am young, my cancer was triple negative, had spread to my lymph nodes and I had residual disease after chemo puts me in a high risk category and I am willing to do anything in my power to lower, or better yet, eliminate that risk.
Tuesday, 19 July 2016
Circulating Tumor Cells
CTCs are cells that a primary tumor sheds into the bloodstream or lymph system and these are the cells that can form metastasis, even after the primary tumor is removed. They can potentially play an important part in disease progression which is why many clinical trials have begun tracking them. I have seen a few clinical trials now that are designed to show whether there is a link between the number of CTCs and people who's cancer recurs versus those that remain disease free.
Even though this concept of CTCs is new in North America, it is something that has been done for a number of years already in Europe. Maintrac, which is the lab that did my chemo sensitivity testing, also measures circulating epithelial tumor cells and is one of the methods that can be used to track them. Cell Search is another system that measures CTCs and is the only one that is FDA approved. From what I have read, the number of cells detected by both systems can be drastically different which is why it is good to pick one and stick to it. The reason I chose Maintrac is because they claim to have the most sensitive CETC counting system in the world. They do not "touch" or extract the cells so this way no cells are lost when being processed. That is why the number of CTCs they report will be significantly higher than Cell Search. They also do not work with cut-offs to determine prognosis, only an increase or decrease in cell numbers. Cell Search on the other hand uses ≥5 CTCs as the cutoff for unfavorable prognosis.
Although it is approximately $350 each time you test, to me this seemed like a good way to gauge what was happening in my body post treatment. Unfortunately, rather than seeing a decrease in cell numbers which is the desired outcome, the two tests I have done showed an increase in cell numbers. I did one post radiation as a baseline, another 3 months later and in that timeframe, the cell count more than doubled. Fortunately this was caught early which is the intention of monitoring CTCs but these results together with the positive Oncoblot are a clear sign that I need to take action now.
Even though this concept of CTCs is new in North America, it is something that has been done for a number of years already in Europe. Maintrac, which is the lab that did my chemo sensitivity testing, also measures circulating epithelial tumor cells and is one of the methods that can be used to track them. Cell Search is another system that measures CTCs and is the only one that is FDA approved. From what I have read, the number of cells detected by both systems can be drastically different which is why it is good to pick one and stick to it. The reason I chose Maintrac is because they claim to have the most sensitive CETC counting system in the world. They do not "touch" or extract the cells so this way no cells are lost when being processed. That is why the number of CTCs they report will be significantly higher than Cell Search. They also do not work with cut-offs to determine prognosis, only an increase or decrease in cell numbers. Cell Search on the other hand uses ≥5 CTCs as the cutoff for unfavorable prognosis.
Although it is approximately $350 each time you test, to me this seemed like a good way to gauge what was happening in my body post treatment. Unfortunately, rather than seeing a decrease in cell numbers which is the desired outcome, the two tests I have done showed an increase in cell numbers. I did one post radiation as a baseline, another 3 months later and in that timeframe, the cell count more than doubled. Fortunately this was caught early which is the intention of monitoring CTCs but these results together with the positive Oncoblot are a clear sign that I need to take action now.
Monday, 11 July 2016
Maintrac
Chemo sensitivity testing is something else I wish my Oncologist would have made me aware of. Did you know that different chemo regimens can be tested on your tumor cells? This testing can even be done before you start chemo to test the efficacy of the drugs being used. What a novel concept!
Before chemo, I was aware of the Oncotype Dx test which my Oncologist confirmed is only for women that are estrogen receptor positive to determine the aggressiveness of their cancer. I was told that because I was triple negative, AC-T was the regimen that worked the best and that was the end of the conversation. Unfortunately, even if my tumor was tested, I don't know if that would have changed the course of action. Our medical system is just not there yet but hopefully there will be a day where chemo is more individualized because people's cancers respond differently.
For example, my testing showed that Carboplatin which is a drug often combined with Taxol for women that are BRCA positive, was not effective. The response of my cells was 20% where the optimal response is 100%. Xeloda (also known as Capecitabine) on the the other hand was 85%. Other non-chemo therapies can also be tested such as mistletoe which is commonly used by Naturopaths. I tested two types of Mistletoe and got very different responses. Helixor was less than 10% and Iscador was 50%. Unfortunately I have been taking Helixor since completing radiation which is frustrating but I'm glad I did this test because who knows how much money I would have spent on something that was not effective. The effect it had on my body is also a concern because even natural therapies can have ramifications.
Since I received the results of the Oncoblot test, I have been gathering as much information as possible to help determine next steps and this chemo-sensitivity testing is just one piece to the puzzle. Unfortunately it is not cheap at approximately $500 per substance that you want to test but if you are able to afford it, this may be a good idea either before you start chemo or even afterwards if like me, you do not have a PCR (pathologic complete response) and are considering adjuvant chemo.
There are various companies that offer this testing. Mine was done through Maintrac which is a lab in Germany. I was able to have my blood drawn by my Naturopath and the sample arrived in Germany 48 hours later via FedEx.
Before chemo, I was aware of the Oncotype Dx test which my Oncologist confirmed is only for women that are estrogen receptor positive to determine the aggressiveness of their cancer. I was told that because I was triple negative, AC-T was the regimen that worked the best and that was the end of the conversation. Unfortunately, even if my tumor was tested, I don't know if that would have changed the course of action. Our medical system is just not there yet but hopefully there will be a day where chemo is more individualized because people's cancers respond differently.
For example, my testing showed that Carboplatin which is a drug often combined with Taxol for women that are BRCA positive, was not effective. The response of my cells was 20% where the optimal response is 100%. Xeloda (also known as Capecitabine) on the the other hand was 85%. Other non-chemo therapies can also be tested such as mistletoe which is commonly used by Naturopaths. I tested two types of Mistletoe and got very different responses. Helixor was less than 10% and Iscador was 50%. Unfortunately I have been taking Helixor since completing radiation which is frustrating but I'm glad I did this test because who knows how much money I would have spent on something that was not effective. The effect it had on my body is also a concern because even natural therapies can have ramifications.
Since I received the results of the Oncoblot test, I have been gathering as much information as possible to help determine next steps and this chemo-sensitivity testing is just one piece to the puzzle. Unfortunately it is not cheap at approximately $500 per substance that you want to test but if you are able to afford it, this may be a good idea either before you start chemo or even afterwards if like me, you do not have a PCR (pathologic complete response) and are considering adjuvant chemo.
There are various companies that offer this testing. Mine was done through Maintrac which is a lab in Germany. I was able to have my blood drawn by my Naturopath and the sample arrived in Germany 48 hours later via FedEx.
Tuesday, 28 June 2016
Oncoblot
I have been neglecting this blog lately and unfortunately it isn't because I've had so much fun living my post treatment, cancer free life that I didn't have time. I wish I could say that. Nope, I have hit another bump in my road to recovery and that bump is called Oncoblot. The Oncoblot test, as described on their website identifies a specific type of protein in the blood, ENOX2, which exists only on the surface of a malignant cancer cell. The ENOX2 proteins are shed into circulation and can be detected in the blood. These proteins serve as highly sensitive markers for confirmation of cancer presence meaning that because my test came back positive, I still have malignant cancer cells in my body.
The main study that was done using this test can be found here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3901999/
Essentially they took 110 people with no signs of cancer, tested them using the Oncoblot and 40% were positive for the ENOX2 protein. This may seem like a lot but those are the statistics, 2 out of 5 Canadians (45% of men and 42% of women) are expected to develop cancer during their lifetimes. That is the sad reality of the toxic world we live in.
The positive part of this study was that after completion of 3 to 17 months of Capsol-T use, 94% of subjects subsequently tested negative for ENOX2 presence. This can be attributed to the fact that the Oncoblot detects cancer at such an early stage that in most cases it can be reversed by making lifestyle changes and using natural supplements.
What does this all mean for me? It means that the malignant cells still floating around in my body could be killed with the supplements that I have been taking or they could not. My need for control makes me want to do more to ensure that the next time I take this test it will be negative. At $1,700 each time, it better be negative....but how can this be done? That is where the hours of research come in, hence my absence from the blog.
For anyone who wants to take the Oncoblot in Canada, it can usually be ordered by a Naturopath. Just beware that your Oncologist will know nothing about it and because it is a test they do not routinely use, if it comes back positive, there is nothing they can do. Understandably, this can create a lot of frustration so be prepared before you even go there. I am glad I took it as it confirmed in my mind that some type of additional treatment is needed. What treatment is still to be determined.
The main study that was done using this test can be found here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3901999/
Essentially they took 110 people with no signs of cancer, tested them using the Oncoblot and 40% were positive for the ENOX2 protein. This may seem like a lot but those are the statistics, 2 out of 5 Canadians (45% of men and 42% of women) are expected to develop cancer during their lifetimes. That is the sad reality of the toxic world we live in.
The positive part of this study was that after completion of 3 to 17 months of Capsol-T use, 94% of subjects subsequently tested negative for ENOX2 presence. This can be attributed to the fact that the Oncoblot detects cancer at such an early stage that in most cases it can be reversed by making lifestyle changes and using natural supplements.
What does this all mean for me? It means that the malignant cells still floating around in my body could be killed with the supplements that I have been taking or they could not. My need for control makes me want to do more to ensure that the next time I take this test it will be negative. At $1,700 each time, it better be negative....but how can this be done? That is where the hours of research come in, hence my absence from the blog.
For anyone who wants to take the Oncoblot in Canada, it can usually be ordered by a Naturopath. Just beware that your Oncologist will know nothing about it and because it is a test they do not routinely use, if it comes back positive, there is nothing they can do. Understandably, this can create a lot of frustration so be prepared before you even go there. I am glad I took it as it confirmed in my mind that some type of additional treatment is needed. What treatment is still to be determined.
Thursday, 2 June 2016
Debating Between Mastectomy and Lumpectomy - Part 2
A few weeks ago I published a post that seems to be getting a fair amount of traffic about a lumpectomy versus mastectomy. Sometimes I make light of it but in reality this is a very difficult choice. I am the type of person that needs to research and have all of the available information before making a decision. For example, before going out to a restaurant, I usually look up the menu ahead of time and will still take forever to decide what I want. I am the one at the table asking for more time or debating between a garden salad or calamari while the waitress and everyone else sits there waiting. If it takes that much effort to choose an appetizer, you can only imagine what was going through my mind when presented with surgery options.
When making any life changing decision, I think a pros and cons list is in order! For that reason, I thought I would share mine, in case it helps anyone else with this impossible task.
Lumpectomy
Pros:
1. Least invasive surgery.
2. Shorter recovery time.
3. No implant or further procedures needed.
Cons:
1. Chance that there could be unclear margins and a second surgery would be required (estimates show this happens for approximately 20-25% of women which was way too high for me). There is also some speculation that if the surgeon doesn't remove the whole tumor, they may break the perimeter and allow more cells to escape into the body.
2. Some studies like the one I posted earlier show that lumpectomy may not be as effective in younger women. Of course there are also other studies contradicting this.
3. My tumor was large relative to the size of my breast so a lumpectomy would have taken quite a bit of my breast tissue and the cosmetic result wouldn't have been great.
Unilateral Mastectomy
Pros:
1. Most breast tissue would be removed (according to the surgeon, there will always be some remaining so the chance of recurrence in the tissue is never 100% gone, just greatly reduced).
2. This procedure would give me the best chance at clear margins. An MRI before my last chemo showed residual tumor so this was especially important.
Cons:
1. Longer recovery time including a drain.
2. Tissue expander would be needed as I knew I did not want to be completely flat.
3. Cosmetic result isn't ideal.
4. Additional surgery later on to replace the expander with an implant.
Bi-lateral Mastectomy
Pros:
1. Both breasts have an axe wound through them (ok, I'm over exaggerating) but at least they look the same.
2. If breast cancer can develop in one breast, it can happen in the other.
3. On message boards I have read about way too many women that either decided to have both breasts removed and a) the "healthy breast" ended up having cancer cells that were not detected on imaging or b) they developed a new cancer years later in the opposite breast.
4. Even though doctors say the chances of developing a new cancer in the opposite breast are only approximately 10-14%, they still have no idea what caused my cancer so I don't have much confidence in that statistic.
5. Women whose first breast cancer was hormone receptor-negative may have a higher risk of a second primary breast cancer compared to those whose first breast cancer was hormone receptor-positive. This risk was even greater for women who were initially diagnosed with HR-negative tumors when younger than 30 years.
* I also found this article in the Wall Street Journal about increasing numbers of women that choose a double mastectomy. It offers some interesting perspectives from both doctors and patients that I could relate to.
Con:
1. The physical and psychological effects of having both my breasts removed.
2. Two surgeries and going through the tissue expansion process twice.
* If I would have pushed back on the surgeon and asked more questions, the mastectomy and tissue expander insertion on both sides could have been performed in one surgery. This is why I stress being your own advocate!
3. Higher risk of complications.
There could be totally different pros and cons on someone else's list which is why surgery is such a personal decision. For example, I did not include my husband or anything to do with my personal relationship on this list as he was fully supportive regardless of my decision but I understand that can be a factor. Radiation was also recommended regardless of the surgery I chose.
Ultimately I went with a double mastectomy and am currently recovering from my second surgery. No cancer cells were found in my "healthy breast" but there were micro calcifications in the ducts which can suggest areas of increased activity in some breast cells. This finding could be an early indication of cancer that may have developed down the road or it could have remained completely benign and never caused any problems. For me, this was one of the factors reinforcing that I had made the right decision. At the end of the day, feeling confident that you have done the best you can is all anyone can ask for!
When making any life changing decision, I think a pros and cons list is in order! For that reason, I thought I would share mine, in case it helps anyone else with this impossible task.
Lumpectomy
Pros:
1. Least invasive surgery.
2. Shorter recovery time.
3. No implant or further procedures needed.
Cons:
1. Chance that there could be unclear margins and a second surgery would be required (estimates show this happens for approximately 20-25% of women which was way too high for me). There is also some speculation that if the surgeon doesn't remove the whole tumor, they may break the perimeter and allow more cells to escape into the body.
2. Some studies like the one I posted earlier show that lumpectomy may not be as effective in younger women. Of course there are also other studies contradicting this.
3. My tumor was large relative to the size of my breast so a lumpectomy would have taken quite a bit of my breast tissue and the cosmetic result wouldn't have been great.
Unilateral Mastectomy
Pros:
1. Most breast tissue would be removed (according to the surgeon, there will always be some remaining so the chance of recurrence in the tissue is never 100% gone, just greatly reduced).
2. This procedure would give me the best chance at clear margins. An MRI before my last chemo showed residual tumor so this was especially important.
Cons:
1. Longer recovery time including a drain.
2. Tissue expander would be needed as I knew I did not want to be completely flat.
3. Cosmetic result isn't ideal.
4. Additional surgery later on to replace the expander with an implant.
Bi-lateral Mastectomy
Pros:
1. Both breasts have an axe wound through them (ok, I'm over exaggerating) but at least they look the same.
2. If breast cancer can develop in one breast, it can happen in the other.
3. On message boards I have read about way too many women that either decided to have both breasts removed and a) the "healthy breast" ended up having cancer cells that were not detected on imaging or b) they developed a new cancer years later in the opposite breast.
4. Even though doctors say the chances of developing a new cancer in the opposite breast are only approximately 10-14%, they still have no idea what caused my cancer so I don't have much confidence in that statistic.
5. Women whose first breast cancer was hormone receptor-negative may have a higher risk of a second primary breast cancer compared to those whose first breast cancer was hormone receptor-positive. This risk was even greater for women who were initially diagnosed with HR-negative tumors when younger than 30 years.
* I also found this article in the Wall Street Journal about increasing numbers of women that choose a double mastectomy. It offers some interesting perspectives from both doctors and patients that I could relate to.
Con:
1. The physical and psychological effects of having both my breasts removed.
2. Two surgeries and going through the tissue expansion process twice.
* If I would have pushed back on the surgeon and asked more questions, the mastectomy and tissue expander insertion on both sides could have been performed in one surgery. This is why I stress being your own advocate!
3. Higher risk of complications.
There could be totally different pros and cons on someone else's list which is why surgery is such a personal decision. For example, I did not include my husband or anything to do with my personal relationship on this list as he was fully supportive regardless of my decision but I understand that can be a factor. Radiation was also recommended regardless of the surgery I chose.
Ultimately I went with a double mastectomy and am currently recovering from my second surgery. No cancer cells were found in my "healthy breast" but there were micro calcifications in the ducts which can suggest areas of increased activity in some breast cells. This finding could be an early indication of cancer that may have developed down the road or it could have remained completely benign and never caused any problems. For me, this was one of the factors reinforcing that I had made the right decision. At the end of the day, feeling confident that you have done the best you can is all anyone can ask for!
Tuesday, 24 May 2016
Sweet Dreams
Before breast cancer, I knew that sleep was important but never realized all of the ways that it impacts your health. I have always loved my sleep and usually get about 9 hours a night which might seem like a lot to some people. When going on a trip with friends, I am always the last out of bed in the morning and I occasionally get comments poking fun at my early bedtime on weeknights.
Well, it turns out that my sleep habits could hopefully benefit me as less sleep has been linked to an increased risk of developing breast cancer and recurrence. Some doctors have suggested that lower levels of melatonin, a hormone made in the brain, could explain the higher risk of recurrance for women that do not get enough sleep. Melatonin plays a role in regulating the body’s sleep cycle and may also help regulate cell growth and repair. People who don’t get enough sleep tend to have lower melatonin levels. Lower melatonin levels may lead to patterns of breast cell growth and repair that make breast cancer more likely to develop. That is why I take 20mg of melatonin before bed every night.
There is also evidence that longer overnight fasting is tied to reduced breast cancer recurrence. In a study that was recently released, researchers found that fasting less than 13 hours per night was associated with a 36% higher risk for disease recurrence as compared with fasting 13 or more hours per night. Obviously they cannot promise any outcomes and this is only one study but I figure that fasting for 13+ hours is something I can easily incorporate into my recurrence prevention plan:
Voila, 13 hours!
- My husband and I usually eat dinner between 6-7pm
- Drink 1-2 cups of organic green tea before bed
- When I wake up I drink 2 cups of water (read about the health benefits here)
- Shower and get ready
- By the time I have breakfast it is usually 9-10am
Voila, 13 hours!
Friday, 13 May 2016
Cheers to Water
The jury seems to be out on whether women who have had breast cancer should continue to consume alcohol in moderation or cut it out all together. Some articles like this one say that alcohol intake can be detrimental specifically to ER+ women because it increases the amount of estrogen in the bloodstream and can lower the effectiveness of tamoxifen. The problem is that for every study like this one, you can find another one saying that 1-2 drinks a week will have no effect or could even be a positive thing. Analysis of women enrolled in the Collaborative Breast Cancer Study (CBCS) actually found that moderate drinkers before diagnosis had about a 15 percent lower risk of death from breast cancer compared to nondrinkers.
The other confusing thing is that most studies focus on the effect of alcohol on estrogen but what if your cancer was not estrogen positive like mine? What is my risk of recurrence if I have a few drinks a week? I don't think I will ever have a good answer to that question but what I am sure of is that if I want to be 100% safe, the only answer is to not drink at all. In addition to the preservatives in wine, it contains sugar (which I am trying to limit) and pesticides are used to spray the grapes (unless you are buying organic). These are the main reasons I have decided to cut it out for now, while my body is still recovering from treatment.
I never really noticed before how uncomfortable sobriety can be. I didn't realize how much of a social norm it is to go for drinks with colleagues after work, have a glass of wine at dinner or a beer on the golf course. Since before chemo when I decided to stop drinking, I have experienced countless awkward moments of people offering me a drink and when I say no, it's followed by "are you sure?" or "why don't you just have one drink?". I think anyone who has made the decision to give up alcohol gets these weird reactions from people regardless of age but being only 31 years old, I find it even harder to go out with a group of friends and I am the only one not drinking.
There is so much pressure! Got through another week of work? Someone's birthday? Cottage weekend? Vacation? Dinner party? Sporting event? Alcohol to the rescue! My answer? Order water in a wine glass with lemon/lime and no one will know the difference. Sometimes I get a little "crazy" and throw some berries in there or drink Kombucha, which has a ton of health benefits. Cheers!
The other confusing thing is that most studies focus on the effect of alcohol on estrogen but what if your cancer was not estrogen positive like mine? What is my risk of recurrence if I have a few drinks a week? I don't think I will ever have a good answer to that question but what I am sure of is that if I want to be 100% safe, the only answer is to not drink at all. In addition to the preservatives in wine, it contains sugar (which I am trying to limit) and pesticides are used to spray the grapes (unless you are buying organic). These are the main reasons I have decided to cut it out for now, while my body is still recovering from treatment.
I never really noticed before how uncomfortable sobriety can be. I didn't realize how much of a social norm it is to go for drinks with colleagues after work, have a glass of wine at dinner or a beer on the golf course. Since before chemo when I decided to stop drinking, I have experienced countless awkward moments of people offering me a drink and when I say no, it's followed by "are you sure?" or "why don't you just have one drink?". I think anyone who has made the decision to give up alcohol gets these weird reactions from people regardless of age but being only 31 years old, I find it even harder to go out with a group of friends and I am the only one not drinking.
There is so much pressure! Got through another week of work? Someone's birthday? Cottage weekend? Vacation? Dinner party? Sporting event? Alcohol to the rescue! My answer? Order water in a wine glass with lemon/lime and no one will know the difference. Sometimes I get a little "crazy" and throw some berries in there or drink Kombucha, which has a ton of health benefits. Cheers!
Thursday, 5 May 2016
Debating Between Mastectomy and Lumpectomy?
If you have been diagnosed with breast cancer, either a surgeon or oncologist would likely have discussed the options of a lumpectomy or mastectomy with you. Like me, the first thing you probably asked is whether one is more effective than the other. During the information gathering process (which can be non-existent for some women as you feel forced to make a decision so quickly), I was told that long term survival did not differ regardless of which option I chose. Not so says the following article:
Age May Affect Outcomes With Breast Surgery
This study found that women 45 or younger had a 20-year local recurrence rate of 25% with breast conservation versus 11% for older women. Rates of local recurrence after mastectomy were 13% for younger patients and 3% for the older subgroup in the study population of 1,076 patients. In my case if a mastectomy gave me even a 1% better chance of never having the cancer come back, I was going to take it. A double mastectomy? Sure, might as well remove them both and reduce my risk even more.
My point is that a lot of people have opinions on what kind of surgery is best but it's your body and you have to be the one to decide. I think it is important for women to educate themselves about their options outside of what your surgeon, oncologist, radiologist, genetics counsellor etc. recommend. For example, when I said I wanted a double mastectomy both my surgeon and radiologist were very against it. With comments like "why would you cut off a perfectly healthy breast?" and "you know it won't increase your chances of survival" I seriously doubted my decision. By the time my next appointments with both doctors rolled around, they were perfectly fine with my decision and did not question it at all. It's almost like they were testing me to see how serious I was. When someone makes the decision to cut off their breasts, I would think they are pretty damn serious but either way, I guess I passed the test. My genetics councillor on the other hand was very supportive of my decision saying that the chances of developing cancer in the other breast are small, but they increase with age meaning that in 20 years, that risk could be quite high. This is especially true if you are triple negative.
It's such a tough decision and one you probably never thought you would have to make. At this age, I thought I would be deciding on baby names but that's not the way things worked out. This is getting depressing and that was not the intent of the post so I'll cut it off here but hope this information was helpful to you in some way.
Age May Affect Outcomes With Breast Surgery
This study found that women 45 or younger had a 20-year local recurrence rate of 25% with breast conservation versus 11% for older women. Rates of local recurrence after mastectomy were 13% for younger patients and 3% for the older subgroup in the study population of 1,076 patients. In my case if a mastectomy gave me even a 1% better chance of never having the cancer come back, I was going to take it. A double mastectomy? Sure, might as well remove them both and reduce my risk even more.
My point is that a lot of people have opinions on what kind of surgery is best but it's your body and you have to be the one to decide. I think it is important for women to educate themselves about their options outside of what your surgeon, oncologist, radiologist, genetics counsellor etc. recommend. For example, when I said I wanted a double mastectomy both my surgeon and radiologist were very against it. With comments like "why would you cut off a perfectly healthy breast?" and "you know it won't increase your chances of survival" I seriously doubted my decision. By the time my next appointments with both doctors rolled around, they were perfectly fine with my decision and did not question it at all. It's almost like they were testing me to see how serious I was. When someone makes the decision to cut off their breasts, I would think they are pretty damn serious but either way, I guess I passed the test. My genetics councillor on the other hand was very supportive of my decision saying that the chances of developing cancer in the other breast are small, but they increase with age meaning that in 20 years, that risk could be quite high. This is especially true if you are triple negative.
It's such a tough decision and one you probably never thought you would have to make. At this age, I thought I would be deciding on baby names but that's not the way things worked out. This is getting depressing and that was not the intent of the post so I'll cut it off here but hope this information was helpful to you in some way.
Tuesday, 26 April 2016
Supplements
I just watched the third episode of The Truth About Cancer which mainly focused on supplements, juicing and GMOs. It was equally as intriguing as the second episode and made me want to write a post about supplements. When I started seeing a Naturopath, my initial thoughts were that the supplements won't be able to kill cancer cells but at least taking them will make me feel like I am doing something to continue "treatment" when radiation ends.
After watching several documentaries including The Truth About Cancer and hearing about the effects of supplements like Curcumin and Green Tea extract for example, I am more convinced that they have the ability to kill cancer cells while protecting normal tissue. As they said in this episode, most people with cancer have chronic inflammation and if you stop the inflammation, you stop the cancer from forming. I know this was my case as I had my ferritin levels checked part way through chemo and was surprised at the results. Ferritin is an indicator of inflammation in the body and my levels were 3 times the maximum of the normal range.
Now I am still cautious and there are some things I will never believe like the woman they interviewed who said she expelled a tumor from juicing. Really?!? No one has to convince me about the benefits of juicing but come on. That nonsense aside, many of the supplements they talk about do have evidence behind them. I am always interested in what supplements others are taking to prevent recurrence so in the spirit of information sharing, will list out what I currently take. I am in no way suggesting that others follow this regimen.
IV Vitamin C - 50 grams once a week
Helixor (Mistletoe) - once a week with Vitamin C (amount changes)
Alpha Lipoic Acid - 150mg three times a day
Green Tea Extract - 700mg three times a day
Curcumin - 120mg twice a day
Melatonin - 20mg once a day
Coq10 - 100mg once a day
Vitamin D - 5,000 IU once a day
This may seem like a lot and odd coming from someone who asked their Oncologist for more chemo after 4 rounds of AC and 4 rounds of Taxol, however, now that I am educating myself about natural therapies, I am feeling much more comfortable with the drug-free path that I am on.
After watching several documentaries including The Truth About Cancer and hearing about the effects of supplements like Curcumin and Green Tea extract for example, I am more convinced that they have the ability to kill cancer cells while protecting normal tissue. As they said in this episode, most people with cancer have chronic inflammation and if you stop the inflammation, you stop the cancer from forming. I know this was my case as I had my ferritin levels checked part way through chemo and was surprised at the results. Ferritin is an indicator of inflammation in the body and my levels were 3 times the maximum of the normal range.
Now I am still cautious and there are some things I will never believe like the woman they interviewed who said she expelled a tumor from juicing. Really?!? No one has to convince me about the benefits of juicing but come on. That nonsense aside, many of the supplements they talk about do have evidence behind them. I am always interested in what supplements others are taking to prevent recurrence so in the spirit of information sharing, will list out what I currently take. I am in no way suggesting that others follow this regimen.
IV Vitamin C - 50 grams once a week
Helixor (Mistletoe) - once a week with Vitamin C (amount changes)
Alpha Lipoic Acid - 150mg three times a day
Green Tea Extract - 700mg three times a day
Curcumin - 120mg twice a day
Melatonin - 20mg once a day
Coq10 - 100mg once a day
Vitamin D - 5,000 IU once a day
This may seem like a lot and odd coming from someone who asked their Oncologist for more chemo after 4 rounds of AC and 4 rounds of Taxol, however, now that I am educating myself about natural therapies, I am feeling much more comfortable with the drug-free path that I am on.
Thursday, 21 April 2016
The Truth About Cancer
I signed up for The Truth About Cancer docu-series because I saw an advertisement pop up on Facebook. 90% of my internet searches these days are cancer related so it is no surprise that these ads are what show up in my feed (interspersed with celebrity gossip ads). I watched the first episode and wasn't really buying it. The way that Ty Bollinger introduced the series and the barrage of e-mails I had been getting leading up to the release of the first episode seemed too over the top. After the first 10 minutes I closed my laptop and went back to whatever other shows I was watching (likely an episode of the Real Housewives). A few days later I over heard some ladies talking about how informative they found it so today I decided to give it another chance. Episode 2 was well done and I am glad I watched it!
Although there were parts I didn't agree with (mainly about mammograms, how they are dangerous and lead to over diagnosis), there was other advice that rang true, specifically 'let food be thy medicine'. The individuals being interviewed went on to say that sugar isn't just a poison for cancer patients, it is bad for all of us. Dieticians and Nutritionists will agree with this, entire countries are starting to acknowledge it, for example the UK just recently implemented a sugar tax, yet Oncologists still stand by the fact that sugar does not feed cancer and "everything is fine in moderation". There is clearly a disconnect here.
It's also interesting what they said about essential oils, especially frankincense and using natural oils on your body instead of synthetic lotions and potions. I had the 'ah ha' moment a few months ago when it sank in that skin is our largest organ so why was I using lotions every day that were filled with chemicals. Sure, they smell lovely but all of those toxins were being absorbed into my body. Since then, I have stopped lathering up every morning with my Bath and Body Works lotions. They have now been replaced with all natural lotions and oils like the ones sold at Pure and Simple which is one of my favourite new stores.
All in all, watching the episode was an hour well spent. If you're interested in signing up for the docu-series, here is the link....just be prepared for a ton of e-mails every day which you can delete promptly after receiving.
The Truth About Cancer: https://go.thetruthaboutcancer.com
Although there were parts I didn't agree with (mainly about mammograms, how they are dangerous and lead to over diagnosis), there was other advice that rang true, specifically 'let food be thy medicine'. The individuals being interviewed went on to say that sugar isn't just a poison for cancer patients, it is bad for all of us. Dieticians and Nutritionists will agree with this, entire countries are starting to acknowledge it, for example the UK just recently implemented a sugar tax, yet Oncologists still stand by the fact that sugar does not feed cancer and "everything is fine in moderation". There is clearly a disconnect here.
It's also interesting what they said about essential oils, especially frankincense and using natural oils on your body instead of synthetic lotions and potions. I had the 'ah ha' moment a few months ago when it sank in that skin is our largest organ so why was I using lotions every day that were filled with chemicals. Sure, they smell lovely but all of those toxins were being absorbed into my body. Since then, I have stopped lathering up every morning with my Bath and Body Works lotions. They have now been replaced with all natural lotions and oils like the ones sold at Pure and Simple which is one of my favourite new stores.
All in all, watching the episode was an hour well spent. If you're interested in signing up for the docu-series, here is the link....just be prepared for a ton of e-mails every day which you can delete promptly after receiving.
The Truth About Cancer: https://go.thetruthaboutcancer.com
Thursday, 14 April 2016
Now What?
Now that chemo, surgery and radiation are done, it is scary to think that you are really on your own. The doctors don't need to see you for another 3 months, there are no more appointments and you are left with a feeling of 'what the hell just happened'? The part that scares me the most is my doctor's lack of information about how to prevent recurrence going forward. My last doctors appointment went something like this:
"How are you going to monitor that I remain healthy and cancer free?" - Me
"We are going to schedule follow up appointments with you every 3 months" - Doctor
"But those appointments are just a quick physical check up and conversation...no bloodwork or scans" - Me
"We have found that ongoing scans are not helpful for prevention and cause the patients more anxiety. If you have any headaches, bone pain or other symptoms in between appointments you can always call" - Doctor
"I'm fucked" - Me
I didn't actually say that last part but it's definitely what I was thinking. My doctor did offer to at least do a mammogram on my unaffected side and an ultrasound of both breasts and axilla approximately 4 months following the end of radiation. After pushing for bloodwork, they also added it but that's all.
Aside from my concerns over the lack of follow-up, there was no discussion about how, especially with triple negative breast cancer, a low fat diet and regular exercise can lower your risk of recurrence by up to 54%. There was also no mention about how to rebuild my immune system after it has been severely compromised. It makes me so angry to think that after poisoning you with chemo, impacting your physical appearance with surgery and burning you with radiation there seems to be no interest in helping you put yourself back together.
Thankfully this is where my friends, family, social worker and naturopath come in. I have put together my own after care team that can give me the support I desperately need while trying to figure out how to move on from here. So that's what I'll focus on until my next "follow up" appointment in 3 months.
"How are you going to monitor that I remain healthy and cancer free?" - Me
"We are going to schedule follow up appointments with you every 3 months" - Doctor
"But those appointments are just a quick physical check up and conversation...no bloodwork or scans" - Me
"We have found that ongoing scans are not helpful for prevention and cause the patients more anxiety. If you have any headaches, bone pain or other symptoms in between appointments you can always call" - Doctor
"I'm fucked" - Me
I didn't actually say that last part but it's definitely what I was thinking. My doctor did offer to at least do a mammogram on my unaffected side and an ultrasound of both breasts and axilla approximately 4 months following the end of radiation. After pushing for bloodwork, they also added it but that's all.
Aside from my concerns over the lack of follow-up, there was no discussion about how, especially with triple negative breast cancer, a low fat diet and regular exercise can lower your risk of recurrence by up to 54%. There was also no mention about how to rebuild my immune system after it has been severely compromised. It makes me so angry to think that after poisoning you with chemo, impacting your physical appearance with surgery and burning you with radiation there seems to be no interest in helping you put yourself back together.
Thankfully this is where my friends, family, social worker and naturopath come in. I have put together my own after care team that can give me the support I desperately need while trying to figure out how to move on from here. So that's what I'll focus on until my next "follow up" appointment in 3 months.
Saturday, 19 March 2016
Here We Go Again
How is it possible that my eyelashes are falling out again? Almost 5 months to the day since finishing chemo, when I was washing my face at night, I started to notice my eyelashes on the facecloth. Thank goodness for the internet and other blogs I had read that warned me this was coming.
Apparently a lot of women experience losing their eyelashes and eyebrows a second and even third time post chemo because eyelashes go through the process of loss and regrowth in repetitive cycles. After chemo, your eyelashes all grow in at once which means that as part of their cycle, they also fall out all at once. This usually happens about 4-5 months post chemo. Based on what I've read, the only thing you can do is to wait for your body to naturally restore itself after your treatment meaning that this could happen a few more times...great! I was hoping the Latisse I had been using would help but no such luck.
At least both my brows and lashes have just thinned dramatically but not fallen out completely. Nothing that a little mascara, eye liner and eyebrow pencil can't fix. What really would have helped is if one of my many doctors would have warned me about this. Sometimes I think they forget that hair loss, although maybe less traumatic than some of the other side effects from cancer treatments, does have a profound impact on people and warning them about things like this goes a long way. I guess that's what blogs like this one are for!
Apparently a lot of women experience losing their eyelashes and eyebrows a second and even third time post chemo because eyelashes go through the process of loss and regrowth in repetitive cycles. After chemo, your eyelashes all grow in at once which means that as part of their cycle, they also fall out all at once. This usually happens about 4-5 months post chemo. Based on what I've read, the only thing you can do is to wait for your body to naturally restore itself after your treatment meaning that this could happen a few more times...great! I was hoping the Latisse I had been using would help but no such luck.
At least both my brows and lashes have just thinned dramatically but not fallen out completely. Nothing that a little mascara, eye liner and eyebrow pencil can't fix. What really would have helped is if one of my many doctors would have warned me about this. Sometimes I think they forget that hair loss, although maybe less traumatic than some of the other side effects from cancer treatments, does have a profound impact on people and warning them about things like this goes a long way. I guess that's what blogs like this one are for!
Sunday, 13 March 2016
Don't Judge a Book by it's Cover
I saw this posted on Instagram and could totally relate. Over the last few months, I have received so many compliments about how good I look which is always appreciated and nice to hear but at the same time, it makes me wonder if people really realize what I have been through. Sometimes I think people, myself included, look at someone who is young, fit, vibrant and can't imagine that they are fighting cancer or lyme disease or crohn's or whatever the case may be. I am the type of person that tends to downplay things so when I have a bad day or admit to being in pain, it can catch my loved ones off guard. This breast cancer experience has given me such a deeper appreciation for what other people might be going through even though they don't appear to be "sick". What is that old saying? Don't judge a book by it's cover.
This has especially rang true for me recently as I have finished treatment. My employer has been quick to call and advise that it is time to start thinking about a return to work plan and while I understand their position, it's all happening a little too quick for me. While I have been off, I have kept in touch with co-workers and I know what they are thinking....she looks fine, she should be ready to come back to work soon, it's already been 9 months. The truth is, I do look fine, in fact I have lost 15 pounds and probably look better than I did before cancer but mentally, I'm just not there yet. Getting ready to face co-workers I haven't seen, keeping up my exercise routine and healthy eating habits while sitting in an office for 8 hours a day, not allowing myself to get stressed out by my job or the possibility of cancer returning...all of that just feels like too much right now. So instead of worrying about it, with the remaining time that I have off, I am going to continue looking fabulous and work on getting my mind to feel the same way.
Tuesday, 1 March 2016
Is PCR Everything?
When reading through articles, especially about Triple Negative breast cancer, everyone places so much emphasis on a PCR (pathologic complete response). When you have neo-adjuvant chemotherapy, one of the benefits is that the doctor can monitor your response by measuring the tumor (either by feeling it or with an ultrasound). The definition of a pathologic complete response can differ depending on the study being done, which presents an issue in terms of finding a consistent way to classify it. Most studies define it as the absence of residual invasive disease in the breast and in the axillary lymph nodes at the completion of the neoadjuvant treatment. This definition allows for in situ carcinoma, also known as DCIS, to still be present.
Based on the information I have gathered, achieving a PCR is more common in Triple Negative breast cancer because this type is more sensitive to chemo. Studies state that anywhere from 20-30% of women who's cancers lack estrogen, progesterone and HER2 receptors will achieve a PCR. Surely you have read articles like this one stating that patients who achieve a pathologic complete response with neoadjuvant therapy tend to have a very good prognosis. These women are at much lower risk for subsequent distant disease recurrence.
This is all fantastic news for those women that achieve a PCR but what about the other 70-80% of us? Does the fact that we had residual disease mean that we are doomed? Hearing about PCR over and over again, knowing that I did not have a complete response, does not make me feel good and surely there are others that feel the same way. Perhaps you have asked your Oncologist the same questions I have - is there anything else I can do? Do I need more chemo?
There are some women whose doctors will advise that more chemo is recommended but I am not one of them. I have seen 2 different Oncologists now who both said there is no concrete research showing that additional chemo has a long term benefit in terms of overall survival. When weighing the benefits versus potential toxicity, in my case, it is not recommended. So what do I do now? Unfortunately the medical response is "we wait and see". Frankly, I think that is bullshit and the wait and see approach doesn't work for me. I don't want to get back to living my life and forgetting this whole ordeal ever happened. What kind of advice is that anyway?
More to come in a later post about additional steps I am taking to prevent a recurrence. One article that I did find helpful in explaining the prognostic significance of residual disease can be found here: http://jco.ascopubs.org/content/25/28/4414.full. Using the residual cancer burden calculator, it shows that I fall into RCB-I. Maybe I am an underachiever and did not attain the almighty PCR but this does give me some hope that there is light at the end of the tunnel.
Based on the information I have gathered, achieving a PCR is more common in Triple Negative breast cancer because this type is more sensitive to chemo. Studies state that anywhere from 20-30% of women who's cancers lack estrogen, progesterone and HER2 receptors will achieve a PCR. Surely you have read articles like this one stating that patients who achieve a pathologic complete response with neoadjuvant therapy tend to have a very good prognosis. These women are at much lower risk for subsequent distant disease recurrence.
This is all fantastic news for those women that achieve a PCR but what about the other 70-80% of us? Does the fact that we had residual disease mean that we are doomed? Hearing about PCR over and over again, knowing that I did not have a complete response, does not make me feel good and surely there are others that feel the same way. Perhaps you have asked your Oncologist the same questions I have - is there anything else I can do? Do I need more chemo?
There are some women whose doctors will advise that more chemo is recommended but I am not one of them. I have seen 2 different Oncologists now who both said there is no concrete research showing that additional chemo has a long term benefit in terms of overall survival. When weighing the benefits versus potential toxicity, in my case, it is not recommended. So what do I do now? Unfortunately the medical response is "we wait and see". Frankly, I think that is bullshit and the wait and see approach doesn't work for me. I don't want to get back to living my life and forgetting this whole ordeal ever happened. What kind of advice is that anyway?
More to come in a later post about additional steps I am taking to prevent a recurrence. One article that I did find helpful in explaining the prognostic significance of residual disease can be found here: http://jco.ascopubs.org/content/25/28/4414.full. Using the residual cancer burden calculator, it shows that I fall into RCB-I. Maybe I am an underachiever and did not attain the almighty PCR but this does give me some hope that there is light at the end of the tunnel.
Friday, 26 February 2016
Mepitel Film Review
The results are in and I think the Mepitel film gets a passing grade but unfortunately not 100% from me. Based on all of the positive things I was hearing, I was really hoping to be one of those women that sailed through radiation but no such luck. I got to #20 of 25 regular treatments and one night the skin in my armpit area started to itch like crazy. It wasn't overly red so I wasn't concerned but when I woke up the next morning, 3 pus filled blisters had formed right at the edge of the film. My doctor recommended keeping it on but after 2 days, both the look and smell were really starting to gross me out. Sorry if this post is disgusting but I figured I would share for anyone who is in the same situation. I ended up cutting the film in the affected area and did the remainder of the treatments without it. As soon as I took the film off and showered, it felt so much better. The doctor recommended doing a compress with saline and gauze, 4 times a day for 15 minutes each then letting it breath. The blisters started to go away after only about 2 days of doing this and thankfully, so did the smell. Gross!
I think my problem was two fold:
1. I continued to work out 5 days a week during radiation and having a film over your armpit when you are sweating does not create a good environment.
2. I was applying a small amount of deoderant on my underarm area above the film to avoid sweating. Not a good idea. My Radiation Oncologist who I saw many times before starting and once a week after said nothing to me about the dangers of wearing a regular aluminum containing deoderant during treatment. First of all, I had no idea that so many deodorants contained aluminum and secondly, it makes so much sense now that it would react with my skin. After discovering this, I have read a bunch of blogs with people recommending Crystal, Toms and some other natural deoderants that are safe to wear during radiation.
My last day of radiation was a week ago and after 25 regular treatments and 5 boosters, my armpit is burnt to a crisp. The skin is a mix of black areas that haven't peeled yet, red areas where the skin has just peeled and pink skin where it is starting to heal. The rest of my breast is red but seems to be holding up just fine which is why I think the Mepitel film did work. I have been putting Calendula cream (made from calendula flowers and available at natural food stores) on the areas where the skin is still in tact and it seems to be helping.
Radiation and it's after effects have actually been worse than chemo for me. It seems that in 99% of cases, it is the other way around but as usual, I am an exception to the rule.
I think my problem was two fold:
1. I continued to work out 5 days a week during radiation and having a film over your armpit when you are sweating does not create a good environment.
2. I was applying a small amount of deoderant on my underarm area above the film to avoid sweating. Not a good idea. My Radiation Oncologist who I saw many times before starting and once a week after said nothing to me about the dangers of wearing a regular aluminum containing deoderant during treatment. First of all, I had no idea that so many deodorants contained aluminum and secondly, it makes so much sense now that it would react with my skin. After discovering this, I have read a bunch of blogs with people recommending Crystal, Toms and some other natural deoderants that are safe to wear during radiation.
My last day of radiation was a week ago and after 25 regular treatments and 5 boosters, my armpit is burnt to a crisp. The skin is a mix of black areas that haven't peeled yet, red areas where the skin has just peeled and pink skin where it is starting to heal. The rest of my breast is red but seems to be holding up just fine which is why I think the Mepitel film did work. I have been putting Calendula cream (made from calendula flowers and available at natural food stores) on the areas where the skin is still in tact and it seems to be helping.
Radiation and it's after effects have actually been worse than chemo for me. It seems that in 99% of cases, it is the other way around but as usual, I am an exception to the rule.
Saturday, 13 February 2016
Juicing & Smoothies
Towards the end of my chemotherapy treatments, I started hearing more about the benefits of juicing and smoothies in documentaries that I was watching and from my Naturopath. Fat, Sick and Nearly Dead is a great documentary on Netflix about an Australian named Joe Cross who is tired of being overweight and unhealthy. In the documentary, he sets out to regain his health by juicing for 60 days. At the end, you will see that he was able to lose the excess weight and get off of medications that he was taking every day due to an autoimmune disease.
When I go back to work, I realize that making a fresh smoothie every day will be a bit more of a challenge. It is best to drink your smoothie/juice right away to get the optimal nutrients but you could always make it the night before and refrigerate if you don't have time. I find it easiest to wash all of the fruits and vegetables the night before so in the morning, all I have to do is throw them in the blender and go.
Tip - Don't forget to put some veggies in there! I find most of the store bought smoothies contain all or mostly fruit which makes them high in sugar (although it is natural sugars). When searching for recipes, I always look at the fruit to veggie ratio and either add additional veggies if there aren't enough or cut the amount of fruits with a high glycemic load like bananas and dates. For example, if the recipe calls for a banana, I usually put half and find it is plenty sweet.
This movie inspired me to start juicing as an easy way to ensure that I am getting the proper amount of fruits and vegetables every day. Unfortunately, after juicing for about a month, I discovered that it wasn't for me. I was buying a ton of vegetables just to make a tiny glass of juice and didn't like how all the the fibre was thrown out. Instead, I decided to try smoothies which are also a good option to ensure you are eating fruits and vegetables but in a way that you are keeping the fibre and there is not as much waste. If you are interested in the pros and cons of juicing versus smoothies, I found this article helpful:
Regardless of which option you choose, I highly recommend it as a way to ensure you are eating right during chemo and radiation. At my hospital, I found they took a 'eat whatever makes you not feel sick' approach. What I wish they realized is that there are people who still want to try and eat healthy as much as they can and encouraging us to eat popsicles (which are pretty much void of any nutritional value) probably isn't the best approach. If you can stomach a juice or smoothie, regardless of whether it is homemade or store bought, it does so much more for your body than popsicles which are lacking vitamins and minerals and are full of refined sugar.
Here are some delicious smoothie recipes that I enjoy:
When I go back to work, I realize that making a fresh smoothie every day will be a bit more of a challenge. It is best to drink your smoothie/juice right away to get the optimal nutrients but you could always make it the night before and refrigerate if you don't have time. I find it easiest to wash all of the fruits and vegetables the night before so in the morning, all I have to do is throw them in the blender and go.
Tip - Don't forget to put some veggies in there! I find most of the store bought smoothies contain all or mostly fruit which makes them high in sugar (although it is natural sugars). When searching for recipes, I always look at the fruit to veggie ratio and either add additional veggies if there aren't enough or cut the amount of fruits with a high glycemic load like bananas and dates. For example, if the recipe calls for a banana, I usually put half and find it is plenty sweet.
Wednesday, 10 February 2016
Chasing the Cancer Answer
I feel like everyone I have talked to with breast cancer has some theory as to why this horrible thing happened to them. You can't help but think "what have I done to cause this?". Any social worker, mine included, will likely tell you that you didn't do anything...this is not your fault! As a patient, that's nice to hear but the increasing number of people getting cancer has to be somebody's fault. It's not just chance that 1 in 8 women will develop breast cancer in their lifetime. Everyone has heard that statistic advertised, especially during breast cancer awareness month in October when you can't seem to escape it. The equally as troubling statistic to me is that 2 out of 5 Canadians (45% of men and 42% of women) are expected to develop cancer during their lifetimes. Not only that but the number of new cancer cases in Canada is expected to rise about 40% in the next 15 years, according to a new report – Canadian Cancer Statistics.
Most of the articles with these statistics usually have a subsequent paragraph saying something like "you can reduce your risk of developing breast cancer with early screening and being aware of the risk factors". Unfortunately a lot of women that get breast cancer, especially young women like me, don't have any risk factors. I have no family history, I am not overweight, I was never exposed to radiation as a child, I drink little to no alcohol...the list goes on. So what the hell caused this?
Genetics - I have been tested for the BRCA 1, 2 and P53 gene mutations. Especially if you are triple negative, this is something to ask your doctor about and the sooner the better as the results take some time (mine took about 2 months). Depending on the results, a different chemo may be prescribed, for example, studies show that BRCA positive women might respond better to platinum chemotherapy drugs like Carboplatin.
The Birth Control Pill - I was on the pill for 10 years and had just stopped it 1 year prior to being diagnosed. Coincidence? I think not. Although drug companies obviously aren't publicizing the fact that the pill is linked to an increased risk of developing breast cancer, there are quite a few studies that have shown this and the International Agency for Research on Cancer has now listed it as a known carcinogen.
http://www.nbcnews.com/id/8759578/ns/health-womens_health/t/hormone-pills-added-list-carcinogens/#.VrFeIVMrJ8c
There are a ton of other things that could have caused my cancer, some I will probably touch on in a later post but for now, I will leave you with this really interesting video of Wendy Mesley who is a Canadian journalist that was diagnosed with breast cancer. It is from 2006 but in it she asks a lot of the same questions I am asking today that we still don't have answers for. There is one part where she says "at what point do you stop looking for the easy answers like 'eat your veggies' and tackle the more complicated issue of all the carcinogens that we are eating and breathing and drinking every day?" I couldn't agree more!
http://www.cbc.ca/marketplace/episodes/archives/chasing-the-cancer-answer
Most of the articles with these statistics usually have a subsequent paragraph saying something like "you can reduce your risk of developing breast cancer with early screening and being aware of the risk factors". Unfortunately a lot of women that get breast cancer, especially young women like me, don't have any risk factors. I have no family history, I am not overweight, I was never exposed to radiation as a child, I drink little to no alcohol...the list goes on. So what the hell caused this?
Genetics - I have been tested for the BRCA 1, 2 and P53 gene mutations. Especially if you are triple negative, this is something to ask your doctor about and the sooner the better as the results take some time (mine took about 2 months). Depending on the results, a different chemo may be prescribed, for example, studies show that BRCA positive women might respond better to platinum chemotherapy drugs like Carboplatin.
The Birth Control Pill - I was on the pill for 10 years and had just stopped it 1 year prior to being diagnosed. Coincidence? I think not. Although drug companies obviously aren't publicizing the fact that the pill is linked to an increased risk of developing breast cancer, there are quite a few studies that have shown this and the International Agency for Research on Cancer has now listed it as a known carcinogen.
http://www.nbcnews.com/id/8759578/ns/health-womens_health/t/hormone-pills-added-list-carcinogens/#.VrFeIVMrJ8c
There are a ton of other things that could have caused my cancer, some I will probably touch on in a later post but for now, I will leave you with this really interesting video of Wendy Mesley who is a Canadian journalist that was diagnosed with breast cancer. It is from 2006 but in it she asks a lot of the same questions I am asking today that we still don't have answers for. There is one part where she says "at what point do you stop looking for the easy answers like 'eat your veggies' and tackle the more complicated issue of all the carcinogens that we are eating and breathing and drinking every day?" I couldn't agree more!
http://www.cbc.ca/marketplace/episodes/archives/chasing-the-cancer-answer
Wednesday, 3 February 2016
Radioactive
I began radiation recently and again, had to call the hospital and follow up multiple times regarding the start date. Based on some studies I have read (click here for an example), the optimal time to start radiation is within 6 weeks after surgery. For some women who get an infection or have complications after surgery, this is not possible, however, I was healing well and had no issues so couldn't understand what was taking so long. After speaking with the Radiologist, they corrected me that the optimal window is actually 12 weeks but why wait that long? In my mind, sooner is better so after a couple calls, I started radiation 7 weeks after surgery. I write about this because it is just another example of why it is so important to be your own advocate. Yes, it may be uncomfortable to be "pushy" with the doctor, you definitely already have enough to deal with and it may be exhausting to follow up every day but this is your health and it is worth it.
The other thing I wanted to write about is Mepitel film which can prevent or at least reduce radiotherapy skin reactions. It is a breathable dressing that is applied to the area being treated which in my case is the breast and armpit. You wear it all day every day for the full course of radiation which can be annoying, especially if you live somewhere with warm weather as it is hard to cover up. I have been showering and working out with it on and haven't had any problems other than patches peeling off so the radiation technicians replace them. My view was that if the claims are correct and it reduces skin reactions by 80-90%, it was worth the inconvenience and cost (approximately $200-$300 for the full course of radiation depending on how much film is needed). I spoke to a few women that used it and either had no skin reaction or it was very mild. If you are interested and want to ask your Radiologist about it, here is the study that was done: http://www.molnlycke.com/news-media/wound-care/mepitel-film-prevents-radiotherapy-skin-reaction/. It is still considered experimental at this point although from what I understand, women in Europe have been using it for years. My Radiologist ensured me that it did not affect the effectiveness of the radiation so why not give it is try.
I haven't completed radiation yet so cannot comment on the end result but so far so good. I will post an update later!
The other thing I wanted to write about is Mepitel film which can prevent or at least reduce radiotherapy skin reactions. It is a breathable dressing that is applied to the area being treated which in my case is the breast and armpit. You wear it all day every day for the full course of radiation which can be annoying, especially if you live somewhere with warm weather as it is hard to cover up. I have been showering and working out with it on and haven't had any problems other than patches peeling off so the radiation technicians replace them. My view was that if the claims are correct and it reduces skin reactions by 80-90%, it was worth the inconvenience and cost (approximately $200-$300 for the full course of radiation depending on how much film is needed). I spoke to a few women that used it and either had no skin reaction or it was very mild. If you are interested and want to ask your Radiologist about it, here is the study that was done: http://www.molnlycke.com/news-media/wound-care/mepitel-film-prevents-radiotherapy-skin-reaction/. It is still considered experimental at this point although from what I understand, women in Europe have been using it for years. My Radiologist ensured me that it did not affect the effectiveness of the radiation so why not give it is try.
I haven't completed radiation yet so cannot comment on the end result but so far so good. I will post an update later!
Friday, 29 January 2016
Confessions of a Former Meatatarian
Before being diagnosed with breast cancer at the age of 30, I was a big foodie. I ate a lot of meat and remember repeatedly saying that I could never be a vegetarian. I liked all of the posts on Instagram poking fun at vegetarians and vegans and can't remember the last time I went a full day without meat.
Fast forward 7 months later and my how things have changed. I still eat meat but not even close to the same amount I used to, I have incorporated fish into my diet and my fridge is always stocked with vegetables.
The first sign that something needed to change was after my third round of chemo when feeling good with no major side effects, I decided to have a steak for dinner. The nurses tell you not to eat a big meal after chemo and there is a reason. That remains the only time I felt really sick during chemo...I felt nauseous and my body couldn't digest it. If that wasn't enough of a warning that I needed to cut down my consumption of red meat, this announcement definitely hit home. In October, 2015 the World Health Organization was in the news for publishing a warning that red meat causes cancer:
http://www.cancer.org/cancer/news/news/world-health-organization-says-processed-meat-causes-cancer
People who love meat, like my husband, will say that everything causes cancer these days....the environment, microwaves, deodorant, the list goes on. Obviously not everyone who eats large quantities of meat will get cancer but I figure that if I am already susceptible to it, maybe I should be cutting back.
Cancer aside, the documentary Cowspiracy on Netflix will give you some other reasons to cut back or cut it out completely. Who knew that animal agriculture is responsible for 18% of greenhouse gas emissions, more than the combined exhaust from all transportation? I am not an environmentalist by any stretch but this documentary is worth a watch!
Fast forward 7 months later and my how things have changed. I still eat meat but not even close to the same amount I used to, I have incorporated fish into my diet and my fridge is always stocked with vegetables.
The first sign that something needed to change was after my third round of chemo when feeling good with no major side effects, I decided to have a steak for dinner. The nurses tell you not to eat a big meal after chemo and there is a reason. That remains the only time I felt really sick during chemo...I felt nauseous and my body couldn't digest it. If that wasn't enough of a warning that I needed to cut down my consumption of red meat, this announcement definitely hit home. In October, 2015 the World Health Organization was in the news for publishing a warning that red meat causes cancer:
http://www.cancer.org/cancer/news/news/world-health-organization-says-processed-meat-causes-cancer
People who love meat, like my husband, will say that everything causes cancer these days....the environment, microwaves, deodorant, the list goes on. Obviously not everyone who eats large quantities of meat will get cancer but I figure that if I am already susceptible to it, maybe I should be cutting back.
Cancer aside, the documentary Cowspiracy on Netflix will give you some other reasons to cut back or cut it out completely. Who knew that animal agriculture is responsible for 18% of greenhouse gas emissions, more than the combined exhaust from all transportation? I am not an environmentalist by any stretch but this documentary is worth a watch!
Wednesday, 20 January 2016
Tissue Expander
When surgery was finished, a tissue expander was inserted under my chest muscle. In my mind, it was traumatic enough to wake up after surgery and have a huge scar across my chest....if there was an option to avoid being completely flat, I was going to take it. I explain the tissue expander to my friends as a temporary implant - it is something that holds the shape of your skin until the permanent implant is ready to be put in. In reality it is a lot more involved than that.
First of all, if you are getting a tissue expander inserted at the same time as a mastectomy, your surgeon and plastic surgeon have to coordinate the timing since they will both play a role. This presents challenges if you are having surgery during a busy time of year when people tend to take vacation and they also need to obviously be in the same location. Make sure you decide on a plan a few weeks in advance and follow-up! I would have waited 7 weeks after chemo ended if I would not have insisted the surgery be done sooner. I was told that some women have a mastectomy then a tissue expander put in as a delayed procedure but if at all possible, it seems easiest to do both at the same time.
After 2 weeks, I returned to the hospital to begin the process of having my tissue expander filled with saline. The expander has a fill port that was accessed with a needle through the skin. The needle itself did not hurt as I have lost quite a bit of feeling in that area. The weird part of the experience is seeing your chest growing as the saline goes in. For me, they put in 120 cc's of saline each time until I was at 420 cc's (a C cup on my frame). What they did not warn me about is that this part hurts....a lot. After each injection, I was in more pain than after my surgery. I did not take any Tylenol which is my own fault but beware! After about 2 weeks, the pain went away.
At the advice of my surgeon, I had a skin sparing mastectomy after chemo and decided to wait until reconstruction and do a prophylactic mastectomy on the other side. Now, after talking to other people and getting more information, I wish I would have pushed to have both breasts done at the same time. It would have been nice to just get it over with at once and ascetically they would look better, not to mention the worry I have that a cancer could be growing on my unaffected side. Regardless of what surgery you are having it just shows the need to be educated and be your own advocate. You said it, Sheryl Crow!
First of all, if you are getting a tissue expander inserted at the same time as a mastectomy, your surgeon and plastic surgeon have to coordinate the timing since they will both play a role. This presents challenges if you are having surgery during a busy time of year when people tend to take vacation and they also need to obviously be in the same location. Make sure you decide on a plan a few weeks in advance and follow-up! I would have waited 7 weeks after chemo ended if I would not have insisted the surgery be done sooner. I was told that some women have a mastectomy then a tissue expander put in as a delayed procedure but if at all possible, it seems easiest to do both at the same time.
After 2 weeks, I returned to the hospital to begin the process of having my tissue expander filled with saline. The expander has a fill port that was accessed with a needle through the skin. The needle itself did not hurt as I have lost quite a bit of feeling in that area. The weird part of the experience is seeing your chest growing as the saline goes in. For me, they put in 120 cc's of saline each time until I was at 420 cc's (a C cup on my frame). What they did not warn me about is that this part hurts....a lot. After each injection, I was in more pain than after my surgery. I did not take any Tylenol which is my own fault but beware! After about 2 weeks, the pain went away.
At the advice of my surgeon, I had a skin sparing mastectomy after chemo and decided to wait until reconstruction and do a prophylactic mastectomy on the other side. Now, after talking to other people and getting more information, I wish I would have pushed to have both breasts done at the same time. It would have been nice to just get it over with at once and ascetically they would look better, not to mention the worry I have that a cancer could be growing on my unaffected side. Regardless of what surgery you are having it just shows the need to be educated and be your own advocate. You said it, Sheryl Crow!
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