Oncotype DX score 30, weighing options

sos1125

Just learned that the oncotype DX score for my 1.1cm grade 2 idc is 30, so at the very top of the "intermediate risk" category. The report states 20% recurrence risk in the next 10 years with Tamoxifen alone. I initially thought "must do chemo," then my medical oncologist told me she plugged data from my actual tumor (size, grade, what the surgical pathology report listed as estrogen responsiveness of 95%, my age) into some sort of calculator Oncotype DX makes available to doctors; she said with this data added my absolute recurrence risk with Tamoxifen alone next 10 years is 11% and absolute risk using an aromatase inhibitor plus bisphosphonate (I am 59 years old but was going to use Tamoxifen due to osteopenia) is around 9%, She said my benefit from chemo would only be around 2%. The recommended chemo is 4 rounds of taxotere and cytoxan. The oncologist said I could go either way, suggested that using the AI and bisphosphonate would be equivalent to Tamoxifen plus chemo and then I could just skip the chemo. I am in my 5th week post-surgery and she said chemo needs to start no later than 8 weeks past surgery.

Have been agonizing the past 24 hours about what to do. On the one hand, would love to get the extra 2% benefit, on the other hand, I am horrified at what chemo will likely do and could potentially do to my body, especially over the long term. I'm particularly worried about vision changes (already have issues there), neuropathy (already have a little of that in one foot) and brain effects over the long haul. I'm also incredibly nervous about the anti-hormone drugs and their long-term effects, but figure with a recurrence rate in the 20s off the hormone drugs, I am going to have to at least try those.

On the one hand I think a 2% chemo benefit is not worth the collateral damage, but it makes me a little nervous that the oncologist used the estrogen level reported in my pathology report rather than the lower estrogen level shown on the Oncotype DX testing when she did he absolute risk calculator. I asked her why my score would be so high and she said likely because my cancer is PR- and "probably the Ki67 was high." When I asked her what my Ki67 level is, she said Dana Farber doesn't assess that as it "isnt reliable." I am lining up three additional local medical oncology consults next week, one at U-M Comprehensive Cancer Center. Fouling up the process is that the D-F lab has apparently lost my pathology slides, and these are needed for the U-M consult. Has anybody here ever had that happen? Was the lab able to recut slides from whatever tumor was left? Praying those turn up soon.

Really would appreciate input re your decision-making process regarding chemo, especially if your oncotype score was in the high "intermediate" range, but oncologist said absolute benefit from chemo was low. Trying to decide whether, if I get mets down the line, I would be okay with a decision not to do chemo figuring I would know that I still had risk whether or not the chemo was done... or whether I would be kicking myself for not doing it and getting that tiny edge.

Thanks in advance for any input. Worst day since diagnosis.