NO CHEMO! NO CHEMO!

 

I'm more of a John Cusack girl myself, but this conveys the sentiment well.

So F Yeah, NO CHEMO.

The full update. With a h/t to everyone who joined me in the constant "no chemo" chant.

I met my oncologist yesterday. She walked in and said long time no see...and I have no recollection of seeing her before, to be honest. The first day I went to the clinic (and really much of this experience) was a blur: that was the multi-disciplinary appointment where I met everyone on the care team one after another. The oncology appointment was odd because I was introduced to one doctor who led the appointment, but there were two others standing in, and I think a third who floated into each of the appointments (and has continued to pop in; in fact, she's the one who discharged me from the hospital technically, though before I left, my surgeon came by).

The oncologist yesterday was decidedly not the one who led that appointment, that much I remember. I'm okay with that: of all the doctors I met that day, she was the one I think I clicked the least with. This one seemed to know who I was though, and recalled my severe vomit phobia. And she didn't seem to mind my rapid fire list of nerdy questions (and discussion of actual papers, which was really more questions of how they are interpreted with respect to my results). 

We went through the pathology again, and then we got to the real news: the oncopanel. Holy crap. I'd done my background reading on the thing and knew how they did it, what it was, etc. I knew what the score categories were, etc...but all my knowledge is nothing in the face of someone who applies this stuff to treating people every day. So when the oncopanel showed up in my patient portal, I tried not to get ahead of myself and interpret it (though there may have been a string of texts with Anna where we mutually hyperventilated).

First some background. What is this oncopanel? (or...SCIENCE)

I've mentioned it before, but the Oncopanel DX is a test for people with hormone-receptor positive, HER2- tumors. Once a surgeon removes a tumor, it's sent it to a company who sequences it for 21 genes. From there, they look at how much each one of those genes are expressed and use a complicated score to determine a Recurrence Score (RS). The technology here is extremely well established (they use something called rtPCR which allows them to quantify how much there is of each gene; this is a process we used to do for a frog disease I used to study, which is to say, it's well known and straightforward as these things go...but every lab I worked in that did this stuff had a shrine to each study organism people worked on, so there was a teeny bit of magic involved). 

The RS allows them to predict, based on several very large clinical trials, the likelihood of "distant recurrence" at 9 years: the likelihood that the cancer will come back somewhere else within 9 years., with the assumption that the patient starts endocrine therapy (more on that soon). Why nine? That's how far the data they have allow them to predict. Will it get even better one day? Maybe.

AND this profile allows them to estimate the likelihood that a patient will benefit from chemotherapy. Chemotherapy involves repeated infusions of extremely toxic chemicals: it's risky and there are almost always side effects, even if the oncologist does their best to ameliorate them. This assessment allows an evidence-based way to ask whether putting a patient through though chemo will reduce the chance of the cancer recurring. 

Is it ever 100%? Of course not. But it's the best we have for now.

[END SCIENCE]

Cool. So what did you learn about yourself?

I'm a 10!

The RS goes from 1-100 and interpretation is set by age. If you're under 50 (I am), the interpretation is slightly different from if you're over 50.

In my case, it wouldn't have mattered: I fall into the lowest RS category, with <1% likely benefit from having chemo. I was told by one doctor that as long as it's below 20 (~1.6% benefit for those under 50), they generally avoid chemo. The cutoff RS is a bit lower for younger people than for those over 50 (RS>25 gets chemo for those over 50). Again, I am not that kind of doctor, so all of this is just what I was told. What I really care about here: less than 1%. No chemo for me.

Last, the chance of my cancer coming back in the next 9 years is very low: 3%. They will never promise no chance, but my oncologist said this is about as low as it gets. 

I've joked before that if I had to have cancer, I had the "good" cancer. I'll just repeat that here. For so many people, this is not their story. I am extremely lucky.

What's next?

I start endocrine therapy. This is NOT the same as chemotherapy. I'll do a post on this separately because it's a lot more science. In a nutshell, I start next week, and while there's always a chance of it going icky, the one I'll be taking tends to be well tolerated.

What else made your day?

I am so glad you asked! After I met with my oncologist and got the first real fun thing to put into my binder of results and papers and such (the binder labeled "Least Fun Binder Ever"), I walked over to meet Emyli in the building where she works. She met me in the lobby (no, I didn't get to go tour the pathology lab) and brought me all the tissues I asked for. I am now the proud owner of my titanium biopsy clips, two slides bearing stained sections of my actual tumors, and a thumb drive with a couple of very detailed scans of said slides so that I can zoom around in them. This is a good reminder that I am shit at histology (hey, biology is a BIG field and no one knows it all!). I looked at the slides and could identify precious few things, but that's neither here nor there. I can look at them! It's also the first time I've actually really gotten to see Emyli since the pandemic, I think, and that was nice. We cackled inappropriately in the lobby while we talked about the nerdy things she and I normally talk about. And then I came home and took a nap.