A week ago today, we ventured downtown to Manhattan to the Breast Care Center of Memorial Sloan Kettering. The building sat on a non-descript corner and didn’t boast its name so one could easily walk by it. Our little man ventured off to the zoo with family and Joe & I made our way inside.
As the #2 cancer hospital in the United States, our expectations were high. I wasn’t fitted with a wristband or a GPS tracker like the other centers and it wasn’t quite as “high tech” in terms of the center itself but they did not disappoint. I filled out paperwork and was sent to a room to wait for the doctor. Once he arrived, he went over my history and I filled in any holes that he was missing and then a brief medical exam was conducted. He then left while Joe helped bandage me back up and we got comfortable to begin our conversation.
We discussed my current course of treatment and that it will be indefinite until it stops working, which he supported. At MSK they typically do 7 days on and 7 days off of Xeloda instead of 14/7, like I am doing. He expressed that I have that option available to me in lieu of a reduction in dosage, so that was good to hear. We discussed the next “standard” treatment, which would likely be IV chemo (Taxol, a sister to Taxotere that I had last year). The chemo wouldn’t be as intense as the 4 medicines that I had last year but it is IV chemo so I would lose my hair and I’d have to go weekly, among other things.
Next, he broke down the 3 different therapies that are available outside of standard treatment – Molecular Therapy, Immunotherapy and Hormone Therapy.
The Molecular Therapy is something that I am already being tested for since I am having the Oncopanel done through Dana Farber. This test typically takes 2 – 3 months. It’s also something MSK would have done as well and they are just as anxious for the results. Basically, the Oncopanel is taking slices of my actual cancer and testing it for all of the genetic mutations available. Of course, there could be hundreds of mutations but only a few handfuls of treatment options. In the future though, more options could become available based on the mutations. Once my actual genetic mutations are determined, there is the potential to target my actual cancer at the molecular level.
The Immunotherapy is something that I have read a lot about and also something that Moffitt had offered up in terms of a trial available. It does just what its name suggests. It works to boost up your immune system so that it is strong enough to fight off or attack the cancer on its own, as if it were a virus or infections. It wasn’t MSK’s first pick for my situation since the responses have been mixed, however for Triple Negative (TN) breast cancer like mine, the cancer seems to be receptive.
Next is hormone therapy. So this is where things were interesting. I have been “dismissing” hormone therapy because I am TN. Well, apparently there is also something called an androgren receptor. It is produced in both men and women but primarily men for the purpose of hormones such as testosterone. It is similar to estrogen and is actually a pre-estrogen receptor. Only 20% of breast cancers have this particular receptor but there are trials available that they are able to target this particular receptor. They actually would be able to hit the cancer twice with hormone and molecular therapies. While I am expected to be negative, my cancer is being tested for this particular receptor. MSK said that if there was ever a reason to pick up and move, it would be if I was androgen receptor positive. Crazy, right? Now that being said, I would continue on my current standard treatment plan because we know that it is working right now. It’s all a discussion of what comes next, once the Xeloda stops working.
One of the questions that I had, which he wanted to discuss proactively, was around my HER2+ status changing to TN. I’m interested in hearing the different perspectives on this. I know that we will never know for sure what happened, but I do agree with his answer making the most sense so far. Basically, a tumor is made up on millions of copies of a cell. So when a biopsy is done, a portion of that tumor is taken and analyzed to determine the different hormone receptors. At some point, my tumor didn’t like that it was being killed off by chemo last year. So a portion of the tumor changed or adapted to “fight” the chemo. It began to morph away from the HER2+ status and into TN. Once it realized that it was growing stronger as TN, the entire tumor began to change into that and eliminated the HER2+ status entirely.
The reason that I feel strongly that this is what happened to me, is because I can pinpoint the treatment that I felt like it started to change. I had 6 total chemo treatments last year. My first treatment sucked like the doctor said it would but my second treatment was significantly worse, as anticipated. I remember being concerned about my third treatment because of how horrible my second treatment was and yet, it was “better”. My third treatment (and subsequent treatments) was similar to my first and not my second treatments. So I *think* that it was during that time that my tumor started to morph. Obviously we will never know for sure, but it makes the most sense to me.
I also asked about dietary changes and if there was anything that I should do differently in terms of helping to fight off the cancer. His response intrigued me. He brought up sugar, since that is something that is often discussed as helping cancer to grow. Cancer is a smart beast, as we are learning. If it requires sugar to grow, it is going to find a way to create its own. We can cut out every drop of sugar from our diet and yet if cancer requires sugar, it will find a way to make its own and continue to grow. Interesting, right? Now, I’m not going to change my own habits because I feel better eating the way that I do now (plant based) but I think his logic is on point…if there’s a will, there’s a way – even for cancer!
The doctor also shared that he feels there is a lot in genetics that we have not yet discovered and that most, if not all, cancers are likely based on some form of genetics that we have yet to discover.
Needless to say, this visit to MSK was amazing. We learned a lot, the doctor explained things in a way that was easy to understand and he offered up information that we didn’t even know we needed. I am anxious for the results of the Oncopanel and the androgen receptor tests.
Next up is Emory in Atlanta. Although these trips to the different centers are exhausting and expensive, they are beyond worth it. Each center that we visit provides a different level of insight and performs a different test than any of the other centers. While I’m continuing with my standard treatment currently, we are learning more about the intricacies of my cancer and what’s next in terms of treatment options. Each visit is completely worth it!
IamRedPhoenix 