Hi friends,
It’s been a while!
Last time we talked, I had just come through surgery and learned that I had both triple negative and Her2+ cancer remaining in my breast. I wasn’t sure what that would mean, but I knew it would mean a change to my plans.
The bad doctor appointment
I set up appointments with all my doctors. I knew it was important to get all the opinions at this stage.
My western oncologist was first, and honestly it was pretty horrible. She offered no insight into why this other tumor was bigger than we expected, and when I pushed, she said it was because I had done a lower dose of one of the chemo drugs. (My fault) Once I researched this, I learned that the chemo I had lowered would not be expected to impact a triple negative tumor, so this made no sense.
It later became clear to me why she was so defensive.
I also asked her to order some circulating tumor cell tests. There are several kinds of CTC tests, and they all show how many tumor cells you have floating around in your blood stream. We use these in two ways: 1 - to predict the likelihood of recurrence (a positive CTC test means high likelihood), 2 - to analyze the types of tumor cells circulating, and therefore decide on a treatment.
She refused to order the circulating tumor cell tests I wanted! I wish I could say I was surprised, but that had been her pattern. Nothing out of the box, nothing personalized.
She recommended doing another version of chemo/immunotherapy still targeted at the Her2+ cancer, leaving the triple negative without treatment. 14 rounds every 3 weeks. This is the standard protocol, and I think she was genuinely unable to think outside the box, even though my case clearly calls for itS
So I fired her!
As that appointment came to an end I told her I would find a different doctor. She seemed relieved to hear that. After she left I broke down in tears, because being treated so disrespectfully while fighting for your life is honestly really hard to stomach. The nurse stayed with me for a while and really validated my feelings, but it still sucked.
The good doctor appointment
So now I was floating without a primary oncologist in my city. My most immediate need was to get the CTC tests ordered. They were going to be a key piece of my decision making, so I didn’t want to wait. I set up an appointment with an oncologist in Boise that I had heard was good, but in the meantime I booked a day trip down to Reno to see my integrative oncologist and get the tests ordered.
I flew to Reno on September 17th, brought homemade healthy muffins (because I want them to like me 😂), and got blood drawn for 2 CTC tests (Tempus and Guardant).
I also got to chat with my doctor, and he told me that while this wasn’t the best possible news coming out of surgery, I should remember that I am technically cancer free now! 🎉 I have no tumors, the margins were clear everywhere, and my lymph nodes had no signs of cancer. This is all really good! He said he is not stressing about me right now, and I shouldn’t be either. Easier said than done of course, but no other doctor had put it that way, and I think it was really important for me to hear. 😅
I also ordered 3 Signatera CTC tests when I got home (these I can get from my integrative clinic in Boise). Each one tracks a different tumor sample and tests my blood for those specific cells.
The new oncologist
On September 26th I met with Dr. Qureshi, my new oncologist. I immediately liked him a lot. He clearly thinks deeply and individually about each patient. We talked in depth about my case, and he was very confused about why Dr. Patel didn’t treat the triple negative component of my case from the get go. One of my 3 biopsies was triple negative.
This was an Aha moment for me because Dr. Patel had been so defensive at my last appointment, and now I saw that she probably made a big mistake in not treating both aspects at the same time. There isn’t a clear protocol for that, so she would have had to think outside the box, and I don’t think she can.
I also learned that she put some sort of note in my file about me not wanting conventional treatment. Dr. Qureshi came in asking about that. I was like, "what conventional treatment have I turned down?!" (Answer: none) I have just asked questions about each thing, added supportive treatments, and pushed to be treated as an individual. I had two other appointments (with radiation oncologists) who started with the same question, so I know there is some flag in my file! Makes me laugh honestly. I’m a problem child! 😈
The test results
It took a few weeks for all the results to come in, and as I expected, they weren’t black and white. The Guardant and Tempus tests both came in with undetectable levels of CTC. This is the result we want!
All 3 Signatera tests came back positive however. They were all super low, between 0.14-0.23. For reference I’ve known people to have numbers in the thousands. So below 1 is really good, but any positive is seen as a bad sign.
Overall, this means I have a very low burden of cancer in my body right now. It’s almost undetectable.
The plan going forward
Once all the results came back I met with ALL the doctors again. Of course each had a different opinion about what the results mean, and what I should do.
Western Oncologist: Any positive means you will get a recurrence, treatment should be radiation, Her2+ chemo, and then Triple Negative chemo. A grand total of almost 2 more years of treatment.
Integrative Oncologist: These low results are good, but any positive means you still have work to do. It’s ok to take some time trying to fight those few remaining cells with “alternative” treatments, and monitor closely. You are in a good place, just have a little more work to do.
Naturopathic Oncologist: Anything under 5 on Signatera is ok. It’s a good idea to continue a treatment regime for a few months and monitor, but he’s not worried.
The CEO of my own health
Gah! What a range of reactions. Back to me to decide what to do. I wouldn’t want anyone else to make these decisions, but I don’t want to make them either! 😆
This email has gotten long, so I’ll update you on my current treatment plan in the next one. The short version is that I’m trying every single “alternative” treatment I can afford for the next few months, and testing every 6 weeks to see if I can get those CTC numbers to zero.
If you ever have any questions, please feel free to ask! It’s hard to summarize everything in this complicated journey, and I’m happy to fill in any gaps if something was confusing.
Choices I made and things I learned at this stage |
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1) The lesson I learned at this stage really stung. I learned that my own bias against western medicine made me put up with a bad oncologist, probably to my great detriment.
I assumed that all oncologists were the same and would offer the same treatment, because I judged them and assumed none of them thought creatively or personalized treatment for their patients.
I really wish I had shopped around more for an oncologist and found my current one before I started treatment.
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With love and gratitude,
Elizabeth
