Grey area here! 5mm tumor- chemo or no chemo?

mtsabanski
mtsabanski Posts: 3

hi everyone, first time posting here. I am struggling to make a decision as my oncologist, even after a second opinion, is saying it is my choice if I want to do chemo or not! I am 54 years old. I am “borderline they tell me, I’m the grey area”. I am T1a, ER +, PR-, Her2+, DCIS I had a lumpectomy 5 weeks ago, all went well. They took 3 lymph nodes which were all negative, and the margins are clear. They are suggesting Herceptin +Taxol and also an estrogen blocker of letrozole. Plus radiation. They don’t know how much benefit the chemo will have on the her2+ versus the side effects.
My choice is basically, do I do chemo for a tumor size of 5mm or just to radiation with the estrogen blocker? They told me if my tumor size was 4.9mm we wouldn’t even be discussing chemo. So it’s my choice since I’m so much on the border!

If I don’t do chemo will I always be wondering if I should have done it? If I do chemo and get extremely sick will I regret having it when maybe it’s not doing anything for me anyways? This is an extremely difficult decision! Anyone else have to make a decision like this and if so, are you happy with that decision and what did you take into account when making it?

Comments

  • chisandy
    chisandy Posts: 11,645

    Demand a predictive genomic test like OncotypeDX or MammaPrint—it will tell you whether chemo would do any good. I was Stage IA, T1b. My ER+/PR+/HER2- tumor was Grade 2, 1.3cm (13mm) which put me in the "gray area" for which these tests are designed. (My MO said that 1cm, aka 10mm, was the cut-point between test vs no test). So my removed tumor tissue was tested via OncotypeDX. My score came back as 16—and at almost 65, that was considered "low-risk." That was back in 2015: these days a "low-risk" score for older women is as high as 20 or even 25. "Low-risk" indicates that the tumor (or more precisely, any micromets left behind) isn't fast-growing enough for cytotoxic chemo to work.

    But in your case, the HER2+ requires Herceptin—and most oncologists won't administer HER2-targeted therapies without at least one course of chemo. A few might, depending on the % of ER positivity and tumor size and grade. What grade was your tumor? That might explain why Taxol was suggested. (Some oncologists won't administer Taxol or its cousin Taxotere without Cytoxan).

    But you definitely need letrozole because of the ER+, and radiation (despite clean nodes) because you had lumpectomy—accepted belief is that there may be micromets left behind in the "tumor bed" (the space from which the tumor was removed). And these days, you may be able to get a much shorter course of higher-dose radiation aimed at just the tumor bed (back in 2015, for tumors like mine in women under 65 radiation was 6 weeks, whole-breast). I got only 16 sessions (3 weeks of M-F plus one more Monday) aimed at the tumor bed. Nowadays there are even shorter protocols available.

  • thank you for the info. I will ask about a predictive genomic test. Mine was grade 2 also.

  • snm
    snm Posts: 248

    @mtsabanski Hi, sorry for your situation. It is a crazy rollercoaster journey that we are all on. My tumor was 1.3 mm stage 1a within DCIS 5cm area (involved nipple). Her 2+. I opted for BMX w reconstruction which was a tough decision for me. I knew I needed at least a single.

    My MO did not really recommend any further testing or chemo. I see her every 6 months for an exam. We discussed the blood testing several times and I back out after discussing pros/cons as it sounded to me that it would create more anxiety than I wanted.

  • monkeyboy
    monkeyboy Posts: 2

    Hi I had a 5mm mass and I had 25 radiation treatments but did not have any chemo. My oncologist felt since margins were clear and the lymph nodes they removed were negative that I did not need radiation. I was HER 2 negative, which may be the difference in our situations. I would, as the other person suggested, request further testing to help make a decision. You have to make a decision based on the most information, but never second guess yourself.