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.
Tuesday, 28 June 2016
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
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