Okay, this post is mostly just for me, to try to organize my own thoughts. Very self-serving, but figured I would take you along for the ride. It is going to be confusing AF so buckle up.
The next step in my odyssey is deciding if I would benefit from chemotherapy. This is a very complicated decision-making process. I will try and outline it as clearly and simply as I can, but that will never happen because I am long winded, will be adding my conjectures and opinions, there are tons of caveats and nothing is black and white.
Some background. An oncotype is: “The Oncotype DX Breast Recurrence Score test provides a genomic-based, comprehensive, individualized risk assessment for early-stage invasive breast cancer in adjuvant and neoadjuvant settings. The test provides valuable information you can use to personalize a treatment plan specifically for each patient’s situation—including risk of distant recurrence, the benefit from chemotherapy and whether your patient can be treated effectively with hormonal therapy alone.“
Your oncologist sends a piece of your tumor to this one lab in California and they run their tests and give your tumor a score, which then relates to a scale which gives you a metric with which to judge your recurrence risk. Now this scale has changed since my initial diagnosis because of a 2019 study called TailorX. I don’t want to delve too deeply into this because I’m simply not smart enough and there is a caveat that doesn’t exactly change the protocol they used for me in 2016.
So in 2016, my tumor met the requirements to be sent for an oncotype. If you want to know what they are, click the Oncotype link above. My score came back at 17. At the time, 18 was the cut-off for chemo being worth it. There are more scientific ways to say that, but ‘being worth it’ works. I probably would have gotten chemo regardless of my score because I had a metastasis to a lymph node, but since I was on the cusp and was young with no genetic reason to have cancer, they decided to give me chemo. My 2016 chemo was Taxotere and Cytoxen. Of note, you cannot get the same chemo twice. Keep this in mind.
I dotted every i and crossed every t in 2016. Had a mastectomy, chemo and have since completed 5 years of hormone therapy. In my case, it was Tamoxifen. The main takeaway of this, for this story’s purposes, is that I did everything the exact way the Oncotype people would have prescribed.
Cut to literally 5 years and 1.5 months after Cancer Round #1 and starting hormone therapy, I am diagnosed with breast cancer again. We do not know if it is a recurrence of the OG cancer, or a totally new cancer. It is extremely relevant, but also completely irrelevant in my case. I can’t explain this, just go with it.
My oncologist and the rest of the oncology team have met to discuss my case twice and both times they seemed to leave with a takeaway no greater than the shrug emoji. They decided yesterday that they would send my new tumor out for oncotype testing. If they were positive it was a recurrence this wouldn’t make sense because you assume that the oncotype would be around 17 since it is the same disease. Since they aren’t sure, they want to send it out. My 2021 tumor barely made the cut for Oncotype testing, as the tumor has to be under 5cm. Mine was 4.6cm.
We are now in the 2 weeks waiting period while the test is being run. When the results come back, we will ostensibly have an answer as to whether or not I will have another, bigger, badder chemo this time. Remember, you can’t have the same chemo twice so you can only progress to the next severest down the line. They are always hesitant to give you chemo because duh, it is poison and as they get more intense, their side effects are worse for both lifestyle and longevity purposes. I can get into this another time if necessary.
But here is where I am going to break this shit down. Things are going to get meta. Stay focused.
So my OG Oncotype was 17. It was on the cusp and barely had any statistical benefit of chemo, but I had it anyway because I had a metastasis to a lymph node, was young and nothing made sense. My recurrence risk was quite low, I want to say <6%. For the next 5 years, I did everything by the book.
SPOILER! My cancer came back. And it came back gangbusters. In hindsight, we know that I had a 100% chance of my disease returning. So really, that Oncotype in 2016 was irrelevant. Chemo didn’t work and neither did hormone therapy.
This begs the question: if the 2016 Oncotype was irrelevant in calculating my recurrence rate, why would we put any weight into it at all a second time? Say my score comes back at 5, very low. No oncologist would recommend chemo. Or say my result is 75, everyone would recommend chemo. BUT DOES ANY OF THIS MATTER? My cancer fucking loves it here in my body. It found a way to come back (or did it never actually leave? I shudder to think about this) despite every effort to thwart it. And it came back in the minute area of breast tissue left. It overcame great odds to exist.
I am having a really hard time feeling like we should be hinging decisions based on the Oncotype results. I realize there is a ton of statistical evidence to its efficacy, but I am one of the outliers. As usual, I can’t do anything regular or within statistical margins. I fear that no matter what choice is made, whether to have chemo or not, I will be haunted by what I didn’t choose.
If I have chemo, it will be one less defense I have if cancer comes back again, which is now statistically more likely since I’ve had it twice. I will also have to deal with real heart and bone loss issues.
If I don’t have it, I will always wonder if I didn’t do enough to stave it off for the future.
I guess the bottom line is that I will always worry. Before December 2021, I truly didn’t think I would ever have cancer again. Now I will worry every day.
If you have an opinion, I would love to hear it. I think the general hive mind may carry just as much weight as actual science (shrug emoji x 100).
I never took statistics in college. I am glad I didn’t waste my time.