For UK members an interesting study of statistics and chemo..

[queeneee]

Being someone who chose not to have chemo when I had cancer de novo because I was counted low risk and the statistics seemed good for me (had mastectomy). I survived the 10 years referenced in the statistics and in year 11, I was diagnosed with MBC. The oncologist said that it could have also come back even if I had had chemo earlier. So the 10 year limit on stats does not help people consider MBC after 10 years and the percentage of patients for whom MBC develops. Not about MBC in particular, more about the value of certain treatments. bbc.co.uk/iplayer/episode/m...

[Rbeth]

Me too. Very low recurrent rate, but…. Here I am with MBC in my stomach lining and rectum. The oncologist called me to congratulate me as the test was over and I was so low and the next day I received the news of MBC. My oncologist said one percent will slip through and I was the one percent. Lucky me. So here it is almost four years later and I am on my third or forth round of treatment - Piqray. Just watch it l, as it is your body. Glad I kept after my pains.

Be well, be aware of your body.

Reenie

[Hidden]

12 years for me.A relative was a professor researching cancer and advised me not to have chemo because it can cause secondary cancer!!!!!

I am glad I had 12 years of ignorance though.

Clare

[queeneee in reply to Hidden]

yes, I dont regret my decision at all.. my sister still looks ill from prophylactic chemo 8 years later. However, with MBC, i think they need to extend the study years of following

[TammyCross]

I wrote a long response, did not hit reply right away, and it seems to have disappeared. I don't have the patience to write the whole thing again.

In brief, in 2008, I had an oncotype score that did not dictate that I have chemo and radiation after a lumpectomy. I was in a study called TaylorX at NYU that randomly assigned people with scores below the cut off, but not way below, to surgery alone or surgery + chemo and radiation. I had the latter, which I regretted at the time, and 5 years of Arimidex. In 2019, I got mbc with mets to chest and bones. Recently saw the results of the study: people in the treatment group (surgery + chemo + radiation) were no less likely to get mbc than people in the control group (surgery only).

So rest assured, you missed out on unpleasant treatment that, statistically, would not have warded off mbc. (I regretted not having a mastectomy instead of lumpectomy + chemo -- but that didn't protect you, either.)

[TammyCross]

I LOST THIS REPLY, POSTED A NEW ONE WITH SAME INFO, AND NOW I FOUND IT. A LITTLE MORE DETAIL IN THIS ONE.

I think there is some info on that from a US study that I was in when I originally had bc in 2008. My oncotype score put me in the range of needing surgery but not chemo and radiation. It was not definitively low, however. The study randomly assigned people with scores below the cutoff but in a middle range to get surgery only, or chemo and radiation, too. In the study, I was randomly assigned to get both. I had a lumpectomy and then chemo then radiation and five years of anastrozole. Five years in, I was cleared. In 2019, I developed metastatic bc in chest, bones, pleura...Pretty extensive. I regretted not having a mastectomy, as my mother did with no recurrence in the 26 years she lived after her mastectomy (she died of old age at 98). Another friend had had a mastectomy and gloated that she did her research and chose no lumpectomy, no chemo, no radiation. She has not had recurrence for 20 years. (Your story makes me feel a little better about that decision...and I will make you feel better about yours.)

I recently saw results of the study, which was called TaylorX. Turns out that chemo and radiation had no effect on whether we got mbc. That is, the people who had lumpectomy + chemo + radiation were just as likely to get mbc as those who had lumpectomy only. And that was with maybe a 10 year follow up. I can't remember exactly how long the follow up was, but I got two calls about my status after I had mbc, so maybe 11 years. (I started hanging up on the man assigned to follow up. He was maladroit. He said he was calling to find out if I were dead. I hung up on him after we talked for a while -- at first I was joking about his calling dead people, and then I stopped joking and he didn't. He called right back and yelled that he was not insensitive: his mother had breast cancer and died! I hung up again.)

[Peggypilot]

just a comment for Queenee re chemo earlier. I had infiltrating BC at age 46….25 years ago. I had bi lat mastectomy, hysterectomy and chemotherapy and 5 years of Tamoxifen. I was told after 10 years that cancer was behind me. However, it was still lurking in my blood all of that time and came back as bone Mets 2 years ago. Who knew? Just saying please don’t worry about your earlier decisions. I did it all and it still came back. However, I will not do chemo again. I am only taking letrozole at present and it seems to be working. I think the treatment we choose greatly depends on our stage in life.

Best of luck to you and reach out if you want to chat..