Lyme Disease...Are You Kidding Me?

I shared in my last post that autonomic response testing ended up being helpful to me in other ways than what I had originally anticipated. I did the autonomic response testing to determine food sensitivities, guide my food choices and narrow down the list of supplements I was taking.

I ended up finding out I had lyme disease.

During the autonomic response testing, I asked the doctor to test me for parasites or other viruses as it is common for people that have been through chemotherapy to pick up things like this when their immune system is compromised. In addition, he decided to include babesia and bartonella which are the most common co-infections with lyme disease. To both of our surprises, I had them. He tested again just to be sure...same result as the first time.

My immediate reaction was "how is this possible, I have no symptoms!"

I do not recall being bit by a tick, I have no joint pain or stiffness, no neurologic issues. Out of this entire list of symptoms, I have a few but they could apply to anyone. Who doesn't feel like they are loosing their mind every once in a while, especially after everything I have been through? That is actually listed as a symptom. 

At first, because I am less inclined to trust anything that is not definitive (for example, a blood test), I did not believe it. I debated whether I wanted to investigate this any further. On one hand, I felt the need to confirm the diagnosis and treat it, after all, what was the point in spending time and money on  this testing if I was not going to do anything about it? On the other hand, I had just finished 8 rounds of chemotherapy, 2 surgeries, radiation, immunotherapies in Germany and I didn't want to deal with it. It would have been easier to ignore the test or discount the doctor as some "quack" but if I did that and developed symptoms later on or my cancer recurred, I would never forgive myself. 

Instead of taking the easy way out, I called Igenex, a lab based in California that is a leader in lyme disease testing. I asked them to send me a test kit so I could take it to my doctor, get a blood sample, send it in and figure out what the hell was going on in my body. 

Autonomic Response Testing

Autonomic response testing, also known as "muscle testing" was something I had heard of as an alternative to the typical allergy tests that family doctors offer. As many people know, when you go to a doctor complaining about itchy watery eyes, a runny nose and sneezing, they usually tell you it is caused by allergies, recommend you take Claritin or another antihistamine and away you go.

If you want to get an idea of what is causing the allergic reaction, a test can be done where they prick the skin on your arm, and place a drop of the possible allergen to see if there is a reaction. This test can determine if you are allergic to molds, pollen, ragweed, hair from certain animals etc. but it cannot determine whether you have any food allergies or sensitivities - this is where the Naturopath can help.

I was interested in doing autonomic response testing to help guide my food choices. During the muscle testing, I held whatever food it was I wanted to test in one hand and using the other hand, the Naturopath tried to pull my fingers apart. The idea behind this is that if it is something you are sensitive to, your muscle response is weaker and you are not able to resist (ex. your fingers are pulled apart easily). If it is something you do not react to, your muscle response is strong and you are able to resist. This test can be done using the fingers or outstretched arm. A better explanation of how exactly autonomic response testing works can be found here: http://www.drweil.com/health-wellness/balanced-living/wellness-therapies/applied-kinesiology/

Now I know what you're thinking...this is a bunch of bologna! That is what I originally thought as well but it's funny how a major life event like cancer can make you so much more open to different ways of thinking. This has been true for me with regards to alternative medicine - acupuncture, herbal teas and autonomic response testing can be front line treatments in other countries but in North America we are so closed minded and convinced that Western medicine is the only answer.

I would not trust autonomic response testing alone to diagnose any serious conditions but it is a relatively inexpensive, non invasive way to get information about foods or allergens that you are sensitive to and could be causing inflammation in the body. If there is one thing I have learned from all my research, it is that inflammation is the devil and can lead to a host of diseases including cancer.

Autonomic response testing may not be for everyone but it was just another piece of the puzzle that provided me with some very important answers. More to come on that in a later post.

HER2 Status

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"!

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.

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

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!

Harnessing the Immune System to Fight Cancer

An interesting read!

http://www.nytimes.com/2016/07/31/health/harnessing-the-immune-system-to-fight-cancer.html

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:

1. 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.
2. 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.
3. Even though it is "lighter" than AC-T, it is still chemo and does have side effects and toxicities to boot.

For these reasons, the immunotherapies offered in Germany seemed like a better fit for me rather than putting more toxins in my body and potentially making the cancer cells more aggressive and resistant. Of course, I believe that chemo is a necessary evil and do not regret my decision to do it the first time around but much of the most promising research lately has shown that immunotherapies are proving to be successful, especially with triple negative breast cancer. Unfortunately these immunotherapies like Keytruda are only available in clinical trials and very few are in Canada. Most are in the US and because I am still "in remission", I would not qualify anyways. It's too bad that I have to travel to another continent and pay out of pocket for these treatments but at the same time I am grateful that this is a viable option for me as I understand that for many, it is not. 

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. 

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.

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.

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.

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!

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:

• 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!

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!

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.

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.

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

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.

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!