Back in January, I had a biopsy done of two of the three largest liver mets that were part of the progression found by the January PET/CT. I wrote the following three (3) posts as we learned more about the first soft tissue metastases that we’ve ever been able to test:
In the middle of heading up to Boston to Dana Farber for a second opinion with Dr. Sara Tolaney, we finally received the genomic report of the liver biopsy via email despite an attempt by my insurance company to deny payment after a Family Medicine doctor reviewed the request (I could probably write an entire blog post about MDs employed by insurance companies who aren’t qualified to review oncology treatment plans). That report gave us some interesting new information.
First, it confirmed the information in the original receptor testing that the cancer is still positive for the estrogen receptor, although it places the percentage at 90%. Whether the estrogen receptor is 80% or 90%, that’s still solidly positive, so that means there will be more hormonal therapy in my future, most likely. The estrogen receptor is one of the strongest or most affected receptors so this is still good news for me in terms of efficacy of treatment options.
Secondly, the report confirmed that I am Her2neu low and, interestingly, Dr. Tolaney in Boston believes that this is actually a new development. I had understood that my original biopsy was Her2neu low based on the types of testing that were required; however, she disabused me of this assumption based on my records. I asked that the team at Dana Farber get all of my tumor blocks and compare them under the microscope to see what has really changed, including whether the cancer is still ductal with lobular features, so that is an outstanding task for them to complete. The comparison may not affect any clinical decisions, but I still want to know.
Third, the report confirmed that the androgen receptor is positive and gave a percentage, that of 80%. Since this receptor is relatively new and there aren’t FDA approved treatments targeting it yet, I’m awaiting more information before we know what this means. At a basic level, it shows me that there are still other avenues of potential treatment available, which gives me hope for having more time.
Fourth and very interestingly, the report showed that not only am I PDL-1 positive, but that my CPS score is 15. I don’t know much about this yet, but this is typically a biomarker associated with triple negative breast cancer and indicates whether or not immunotherapy will be successful. Dr. Tolaney explained that only about 5% of those of us with hormone positive receptors test positive for the PDL-1 biomarker and a CPS score of 15 means that I would likely respond well to immunotherapy. I will be doing some reading and research on this because it’s not a topic that I’m familiar with yet.
Fifth, the report confirmed that the cancer has lost the progesterone receptor — this loss combined with the PDL-1 biomarker being positive confirms my medical oncologist’s suspicion that the cancer is luminal B and Dr. Tolaney posited that the cancer was masquerading or pretending to be luminal A in the beginning of my diagnosis. These cancer cells are sneaky little boogers!
All of the information is quite fascinating and opens up yet more possibilities for treatment since immunotherapy is not usually something available for those of us who are hormone positive. The report also confirms that the cancer is most likely to respond well to chemotherapy, confirming that I’m on the right treatment. The third opinion at Dana Farber gave me even more peace of mind that we are on the right track and we discussed lots of trial options available now that will likely be approved by the FDA by the time I need to switch treatments. As Dr. Tolaney said, anything we talk about now will likely be obsolete or old news in a month because of all the research going on.
And so, one step forward, one day at a time.
This is all positive news. Sending prayers and warm thoughts!
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Taking all this as good news! Praying as you absorb the additional reading and research. How encouraging to hear that ongoing research is bringing about continual changes! Thank you for the updates that you craft so clearly carefully. 🙏❤️🙏
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Appreciate your support and prayers. 🙂
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Thank you!!
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❤️ ❤️ ❤️ big hugs Abigail
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Thank you!!
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Onward and Upward, Abigail! But can you explain what Her2neu low means? I am Her 2 negative and so I wonder what the difference is.
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Onward and upward is right! Ok, so here’s how I understand the Her2neu thing … remember I’m not a doctor and can’t give medical advice and may not fully understand all of the nuances … there are now three different categories for this receptor based on the number of receptors seen. Negative is when there are absolutely none — usually this is confirmed just with IHC staining. If there is a question with IHC staining, then the sample is sent for FISH testing. FISH testing can return a finding of low or (1+ or 2+) or positive (3+). Low simply means you have some receptors, not enough to make these receptors dominant. There are some studies showing that utilizing HER2 positive medication for people who are HER2neu low may be effective. It’s an avenue of research and learning right now. Hope that helps!!
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Definitely helps and explains things so well! Thank you. As always, you are in my thoughts and prayers.
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Much appreciated!!
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Very promising news, Abigail! So grateful for you and your family—and for all of us whom you inspire and educate.💕
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Thank you, my friend!!
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You are a great fighter!!! ❤️❤️❤️❤️❤️🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼❤️❤️❤️❤️
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Thank you for your support.
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For always and forever!!!❤️❤️❤️❤️🥰🥰
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That’s wonderful news. I’m so happy for you and your family!
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Thank you so much!
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It’s so hard to trust anything when you find out you can’t always even rely on the findings of doctors because of “sneaky little boogers.” But you had to become a pro at misdirection ASAP when they suddenly changed you from level II to level IV de novo. Your attitude (at least by the time it’s on paper) is amazing! Im glad you have so many positives and options open and a hint that they will be successful! As always, praying for continued good news! ❤️
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So true — these experiences with the medical system can be so demoralizing, especially when you are at the least able to handle such difficult things. Appreciate your prayers and support.
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That is awesome news that you are PDL1 positive and will likely benefit from immunotherapy. You can always do both chemo and immunotherapy together.
I love Sara Tolaney— one of the very best!
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My medical oncologist was nearly giddy when she called me with the news. It’s weird, but good.
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So happy to hear this news……woot woot and hooray for self advocacy!! You are truly an inspiration Abigail. I have an MRI tomorrow for a “vague small area” on my liver – will be keeping your experience in mind. Good luck and hugs. Thanks for the happy post.
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Crossing fingers and toes and whatever else can be crossed for your liver to be cancer free. It’s good that your team is double checking.
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I don’t pretend to understand this – except for the signs that this is good news. That’s wonderful news! Best wishes, and much hope!!
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Much appreciated — I can’t say I really understand it all that much either, but I’m doing my best.
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So glad you got so much hopeful information from your biopsy. We have quite a few things in common, Her2 low. PD1 positive with high ER positivity.
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Oooh! I don’t know anyone else who is er positive and pdl1 positive. Glad to meet you!
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So happy to hear the positive news. 💜
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