A recent update. So, because the tumor was of the size that was a close call between a lumpectomy and a mastectomy, the surgeon told me it “my choice!” I’m not sure that’s exactly a definitional Hobbesian choice, but it feels a bit like one. My desired choice is neither, but obviously that’s not an option, so the effort now is to figure out the lesser of the two evils (for me). So while the surgeon had some PTO, I took the opportunity to visit with the oncologist and the plastic surgeon to better inform my decision. Both in the same day, so you get the Northwestern image to celebrate a day in Streeterville 🙂
And the oncology appointment was informative, so I’m glad I took that time. But I am starting to get a sense of the roller coast that is this journey (and I really don’t like roller coasters). She talked a lot about the Ki67 marker–which I don’t recall if I mentioned before. It is a marker that shows how fast the tumor is growing. My number is high and she really didn’t like that. As such, she thinks there is a pretty good chance that I will need chemo (or, the wording I keep seeing “will benefit” from chemo). The short version is that recommended in cases where there is a higher likelihood of the cancer returning and a high score on this marker may indicate that.
Apparently, that call in most ++- cancer (my type) is made after surgery, but–and this is where it starts to get a little scary–she thinks my cancer may be acting a bit like Triple Negative breast cancer (an aggressive type of Breast Cancer). For Triple Negative, the standard of care is to do chemo before surgery.
But because insurance doesn’t pay for that non-standard testing, she offered me a clinical trial. The trial is actually to test for whether immunotherapy added to chemo in cancers like mine can add to improve long-term outcomes. But first, we have to see if chemo is indeed recommended, looking at markers beyond the Ki67. So, to do that, the test covers having the MammoPrint and Oncotype genetic analytics of the tumor itself.
While it was a little icky to see all of the side effects of chemo written out in front of me, there is an upside to chemo. If the tumor reacts to chemo, it will be smaller when it comes time for surgery.
They use the tissue from the original biopsy to run the testing, so now I wait again a couple of weeks for those results to come back. And we will basically be proceeding down the path of preparing for surgery while waiting to see if I need the chemo. Anyway, that is my lay understanding of what’s up. My apologies to all my actual doctor friends who get this better!
In related news, I did also meet with “Plastics” (the plastic surgeon). I had two takeaways from that meeting:
- They had the nicest offices as any that I’ve visited so far! (I’m assuming having some cash patients can help.)
- They have a lot of amazing, yet complicated, options to make the best of a bad situation! So a lot to think about there. For those of you have been down this road and offered to be a resource on the surgery choices, I may reach out during this waiting period.
So, in the meantime, I continue to feel completely fine, so I’m just doing my best not to embrace Chicago summer while waiting on this next round.
Comments
14 responses to “More Tests”
I’m so glad you did this blog. There’s a lot of detail and so many complicated decisions to make. I’m learning so much. It’s good to hear you feel fine. I’m gonna be in Chicago for a long stretch July 6-15. So hopefully we can all get together a few times.
I’m so glad you are in a place with world class care options.
I’m so glad your getting such detailed care. Please keep us updated. I’m thinking about you.
You are in my thoughts. If there is anything I can do to help/support- I’m a quick car ride away!! Just let me know.
Options can be tricky especially when you don’t know the technical side of stuff, but it sounds like you are getting a lot of good input to help you make the best choice for you. Glad for the trial option too. Hugs to you!!
It’s a lot to process. You are young and otherwise healthy so there is a lot to be said for double mastectomy +/- reconstruction. It’s a bigger survey upfront but then you are done with it. Chemo after depending on surgery findings/final path. It’s more now but less uncertainty later which is psychologically easier for some people. Others find it makes more sense to go the opposite direction with not such an aggressive procedure until/unless they need it. All are reasonable choices – you just have to decide which uncertainty you are most comfortable with.
Sending good thoughts your way, it’s a lot to process, glad you have world class care.
Sending you healing prayers, positive vibes and hugs. It is alot to take in and decide what is best for you. 🙏🙏💕
Information evens out the bumps in the roller coaster a bit. There is no one better with data. I’m glad for that and thinking of you.
This stage can be bewildering or overwhelming – certainly was with my husband! Hope you are now getting a clearer picture of the path ahead.
I have lots of mastectomy & recon experience if you decide to go that route (recon done twice, not because of any errors – I can explain – but two different types of recon). And, of course, I have chemo experience (though I’m not sure whether pre-op chemo would use the same drugs I had).
You are brave to share and so appreciate you doing so. Saying all the prayers for you and sending all the good vibes. As others have pointed out, it is fortunate to live in a city with the most amazing medical care, knowledge and experience around. Grateful this is at your fingertips as you navigate this all. Sending love!
Thanks for all these details. Although it is unnerving I am sure to be learning about these choices in real time about your body. I would imagine that your oncologist has provided some comfort by providing the opportunity to be in a clinical trial and to hone in on a multi-pronged diagnostic process. I wish you did not have to wait weeks for the results. Thank goodness for the expertise of your Northwestern team. Your blog will potentially help other women in similar circumstances to understand the “benefits” of the various treatment options. Love and hugs from Chambana.
Carmin, I am ashamed that I didn’t realize what was going on. You sound so practical writing about something so complex!
I can only offer you love and strength, and the knowledge that my closest friend has been in treatment at NW and the doctors there were absolutely pivotal in her care. She was originally treated at what used to be North Shore and… Let’s just say she’s in far better hands now. Sending you all the love from across town — thank you for sharing this.