Implicitly Trusting People from Maine

Preface: Don’t worry, I remain cancer-free!

A year or two ago, my oncologist (“Dr. Cancer”) moved away and was replaced by a new doc, who is very nice but of course did not treat me, and I have no history with. A few months ago I had my semi-annual visit with her, and she said to me, “If you’d like we can perform a Breast Cancer Index test on your tumor to see if it’s worth it for you to continue taking your anti-cancer medication.”

Wait, what??

First of all, what do you mean, do a test on “my tumor?” You mean… you’ve SAVED IT??? Ew gross!!! I’m just picturing it in a jar somewhere, labeled, “Erika’s boob lump, 2016.”

Secondly, of course, what the heck is a Breast Cancer Index test?

Ok, let me back up. A cursory scan of this blog tells me I have not really talked much about the anti-cancer drugs I’ve been on since wrapping up this whole thing. In so many ways with this cancer I was lucky. In addition to being the most common type of breast cancer, highly treatable and curable; it was also of a type that responds well to endocrine therapy. Not to sound like I know what I’m talking about here (because I sure don’t) but my understanding is that this type of cancer (hormone-receptor-positive) means that it “feeds” on estrogen. So drugs that block the cancer from being able to “lock on” to the estrogen are effective at preventing cancer from recurring. Tamoxifen is a drug commonly given to women who are not fully menopausal; and a class of drugs called aromatase inhibitors (AIs) are given to women who are post-menopause. There are reasons for the difference that are complicated and I’d probably get it wrong, so I’ll leave it at that. The standard is for the drugs to be taken for ten years (combined).

In January of 2017, which for me was post-chemo and mid-radiation treatment, I started on Tamoxifen. Side effects were monitored – ironically it can cause other types of girlie cancers so the joy that is internal ultrasounds was something that I got to experience a couple of times. Then in early 2020, my hormone levels indicated that I was now a mature woman, fully post-menopause (yaaay!), and I was switched to an AI drug called Anastrazole. It has its own side effects, primarily bone density loss; but I’ll take a Dexa bone density scan over an internal U/S any day, thankyouverymuch. A Dexa scan was done in fall of 2020, and repeated in 2022 – and yes, it showed a decent bone density loss in that timespan. The standard boiler-plate recommendation was “exercise more” – which is hilarious. If you know me, you know that that’s hilarious.

Other women have other side effects. A big one is hot flashes. I definitely was having those, but they were not that severe. For me that was about it. I have heard that there is some evidence that these drugs stimulate appetite, and it’s fun blaming them for my love handles instead of Tad’s amazing gin & tonics and our wine club subscription. If I stop taking them, what will my excuse be then??

Ok back to my visit with New Dr. Cancer (NDC?) when she told me about the BCI test. Of course, immediately upon getting home I had a virtual visit with Dr. Google to learn more. I was frustrated by the information I was able to find. I work in intellectual property and so appreciate that genetic tests cannot be patented; therefore labs that “invent” new tests like this will make them proprietary – making it harder to get information about them. All the info I could find was either incredibly dumbed-down for laypeople like myself (but I’m not THAT dumb); or scholarly articles that for me to read and understand would take hours with a medical dictionary on my virtual lap. I was able to gather that the BCI test takes a tumor sample and measures the “expression” (some kind of quantification) of two separate genes; and the ratio between those two gene expressions will give an indication of how effective endocrine therapy would be in preventing a recurrence of this specific cancer. It does not tell you anything about your likelihood for a new cancer occurring.

Ok, so that’s what it does. But I still had questions. My biggest question was also the touchiest – setting off my alarm bells was the fact that the company that performs this proprietary test is based in San Diego. So – is this a standard test that is part of the protocol everywhere (and I’d somehow never heard of it or read about it in any of the cancer books and pamphlets I’d collected when I was in the thick of all this)? Or… is there some kind of relationship between the BCI company and my oncology clinic? I mean… is New Dr. Cancer dating the CEO or something??? It did not help that I had to pay for the test out-of-pocket; I mean, wouldn’t the results potentially save the insurance company lots of money on this now-useless drug?

Despite all these reservations, I’m a sucker for measuring things about my body and so of course I wrote the check and did the test. I figured I’d cross the bridge when I came to it. After all, the results could be, “Keep doing what you’re doing!” And that would have been the end of the discussion.

A few weeks later the results came back and they were just the opposite: I am getting NO benefit from taking the drug, and have a 1.2 percent chance of this cancer recurring elsewhere.

I contacted NDC and she was like “well then you should stop taking it. Goodbye.” Hmph.

So I reached out to 2nd.MD for a consultation. And it was a great decision! (This blog posting is not sponsored by 2nd.MD or their affiliates). They obtained all my cancer medical records (lord help them) and I was assigned a warm and fuzzy oncologist with just the right amount of gray hair. I internet-stalked her and found that she practices in Portland, Maine which is obviously her most compelling credential, since everyone I know from Maine is lovely. My call with her was fantastic: she walked me through all the science at just exactly the right level of detail – just enough over my head that I can barely understand my scribbled notes, but fully understood it during the call. At the end of the day, the choice was obviously still mine; but I now felt better able to make my decision. The most important piece of information was that, yes, all the cool kids in oncology-land knows what the BCI is, and it’s not just a San Diego back-alley nepotism scheme.

So about two weeks ago I stopped taking the drug. I now have NO prescription drugs to take which is oddly liberating. I kind of think the hot flashes have abated a little – but I still run warmer than I did pre-menopause so it’s still a win in my book (since I was always cold before and that sucked). I’m told the bone density should improve; it will be interesting to keep an eye on that. Now we just have to see what happens to those love handles! Cheers! 🍸

2 thoughts on “Implicitly Trusting People from Maine

  1. Hi Erika,

    Thank you for posting this very informative blog. The first paragraph even made me laugh. If I read it all correctly your results are really great news. Also very glad you don’t need to take any more prescription drugs.

    Have a great weekend. Love, MOM



    1. Good morning Erika, What you have to report is really great news. Especially the no meds and very small likelihood of any recurrence. You take insanely good care of yourself both physically and mentally and you look really good. Love handles? I think you would have to really poke around to find any signs of those. Enjoy your weekend hike (there has to be one planned). Love Dad


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