Risk vs. Benefit

TeleMiriam · September 2016

Background:

Age 43. Dx 7/5. IDC. Left 7mm. ER/PR +, HER2 -. Grade 2. BRCA 1 and 2 negative. 8/8 bilateral mastectomy. 0 nodes. No lymphatic invasion. No residual carcinoma was identified. Negative left and right. Onco score 14. (Biopsy was used for Onco was no tumor was found. So I don't have a Ki67 number).

Recommendation:

Two oncologists recommended no chemo. One said she would do what I want. (Would be 4 courses of T/C) I was told the 10-year risk of distance recurrence with Tamoxifen is 9 percent. 10-year risk with Tamoxifen and chemo is 7 percent.

Concern:

I want to be aggressive. But I don't know if the 2 percent benefit is worth the serious side effects of chemo. My onco score is "low risk" but it falls outside the "low risk" of the latest tailorx trial which has "low risk" as 0-11. So I am not sure if I am classified as intermediate now.

Questions:

I know the decision is mine. But I am struggling. My family is against chemo. Friends that have been diagnosed with breast cancer understand the difficult decision.

Has anyone been in a similar situation as me?

Has anyone experienced serious/long-term side effects from chemo? (Full disclosure - a close friend got leukemia from chemo and died from complications from the leukemia. i know every situation is different but I can't help thinking about my friend)

I don't know if the potential 2 percent benefit is worth the potential risks of chemo.

Thank you to all those that were supportive when I was first diagnosed. I suffer from clinical depression and when I was diagnosed couldn't function. It's taken me a while to come back to the board but I appreciate this community and the care and compassion of everyone.

chelle44 · September 2016

I had a similar diagnosis to you. Onco score 15. Two oncologists said they don't recommend it although would do it if I felt better about trying everything. I think I had a three percent difference. I tend to put faith in the experience and recommendations of the doctors. One actually said " I don't think the benefit of chemo will outweigh the risk of long term effects from the chemo." I am very peaceful about my decision not to do chemo. I think that is the key piece. You have to do what feels right based on all the info given to you. I also researched lots on my own too. Listen to your doctors and your family but most of all do what feels right. The oncologist said some people need those extra percentages for their own peace of mind. Good luck.

ElaineTherese · September 2016

Hi!

I did chemo because my lump was big (5 cm+), I had one compromised node, my cancer was Grade 3, and I was HER2+. So, it was a no-brainer for me.

If I had your stats, I wouldn't have done chemo. Some variants of chemo (like AC, which I had) have lifetime limits. So, if I were to recur, I probably wouldn't go back to AC. I've used that weapon, and (in the event of a recurrence) it failed.

Chemo is a big but indiscriminate gun. It kills all sorts of ordinary, healthy cells (like those that help our hair grow) on its way to killing cancer cells. There's no need to undergo it unless your chances of recurrence are high (which isn't the case for you). If I were you, I wouldn't do chemo NOW because should there be a recurrence (which is unlikely), it can remain as part of your arsenal against cancer.

Best wishes!

Optimist52 · September 2016

Hi your Oncotype score is still low risk. The Tailor x study chose a certain group to analyse but that doesn't change the official Oncotype DX score categories. Low risk is still 0-17. I would think with your stats that chemo would not be warranted.

beebs2704 · September 2016

Actually your onco score is in the low range for the onco test, not the intermediate. The tailorrx study used different ranges for their research 0-11 I believe was their low. Apparently they are working on their intermediate results, which unfortunately you won't be able to consult before you make your decision.

I had an onco of 26, larger tumour, same grade, no nodes. It was left up to me to decide and I have chosen chemo. At a benefit of 5% it seemed only beneficial at that level. I wouldn't have done chemo if I'd had your numbers.

Best of luck with what you decide!

ocmdcat · September 2016

I would follow the recommendation of your oncologist. To be honest, test, meds, treatment are all educated guessing games. If you read up on it a low onco score does not mean that the cancer won't come back a high one doesn't mean it will. My oncologist told me that the real benefit of estrogen positive breast cancer is the tomoxifin. I said then why the chemo if its benefit is so minimal. He said a study was done on survival rates and those that had chemo too had a much higher survival rate. Tough decision I opted for the chemo, it sucks but I wanted to do all that I could. GOD Bles

Jackster51 · September 2016

I can't imagine the reasoning of offering you chemo? With a such a small tumor it was removed at biopsy.. and a low onco score and no lymph invasion? Why would they offer you chemo? And yeah... I did TC 5 tears ago and have crippling neuropathy in my feet, can't wear a closed toe shoe on my left foot, AND..... never got my hair back after Taxotere. TC is no joke!

Sjacobs146 · September 2016

if my MO had not recommended chemo, I would have gladly passed. Sound like very little benefit to you, and the SEs are no joke. Losing your hair is the least of the problems.

reflect · September 2016

I would also pass with your stats. Your big guns will be Tamoxifin/AIs. I did AC/T and it wasn't nice, but I had 2+ nodes. Your oncs are recommending no chemo, so take that winning ticket and run.

TeleMiriam · September 2016

Thanks everyone for the prompt and informative responses.

Risk vs. Benefit

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