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.