I was initially diagnosed with an 8mm tumour, grade 1, ER+, 1 micromet involved at aged 31. Oncotype score was 8. I had a skin sparing mastectomy with an implant, radiation and took tamoxifen for 18 months to try for a baby (which never happened). I never went back on the tamoxifen, and put cancer behind me.
Roll on to Jan this year, I felt some unusual thickening at the front of my breast on my mastectomy. That same day, I found out the cancer was back. Now had a wide excision mastectomy with a tissue expander. This time its ER+, grade 2, 30mm wide (but only 2mm thick!) Node negative.
My oncologist wants throw the book at me - chemo, ovarian suppression, AIs and ribocyclib. I am now 42 years old.
I have read so much info on all these treatments and I absolutely do not want to do any of them. Quality of life is so important to me. I want to finish my course of tamoxifen only. Predict says chemo will benefit me 2-3% only, but my oncologist says its more like a 5% benefit.
Honestly, after living cancer (and treatment!) Free for 10 years, I cant bear the idea of all the endocrine therapy. Am I mad to stick to my guns and just do the original course of tamoxifen?
Hello @hughesy84 - sorry that you find yourself back here. Whilst not in the same position as you (in terms of recurrence) I too, am absolutely terrified of endocrine therapy which is what has been advised by oncology to me. I am currently not on anything - but said I would consider tamoxifen. I am 40 this year & understand. X
Hey, thanks for replying! Sorry you are here too. From memory, tamoxifen wasnāt too bad for me. I just remember getting hot at night time. And maybe if Iād finished the course last time, I wouldnāt be in this position! It all depends on your personal diagnosis & your toleration levels I suppose. If I were you, Iād give tamoxifen a go at least. You can always stop if its really bad. Iām turning down chemo and all the add on endocrine therapy. I have not heard one positive story about them, and the % it could āpossiblyā help is tiny x
@hughesy84 Iām 42 and was diagnosed with a stage 1 grade 3 er+ve her -ve cancer back in November. All was removed via wide local excision with clear margins and clear nodes. I had an oncotype score of 25 and from what I understand oncologists are likely to recommend the strongest course of treatment at our age to give us the best chance to minimise the risk of it coming back. Iām now 6 weeks into my chemo treatment and it is horrible and I also really didnāt want to do it! However, a conversation with my sister (who is a pathologist that diagnoses cancers) made me understand that these cancer cells are mutating all the time and leaving any tiny trace behind and not dealing with it quickly will increase the risk of it coming back, and I should give myself the best possible chance to minimise that risk. Predict data sources are, understandably, from women diagnosed a number of years ago, where treatment options and drugs available have now changed, especially for breast cancer, so those %s could be very different now. Itās a very personal choice as the impact of the treatment is huge and long lasting, and everyoneās situation will be different, but only you can make the right decision for yourself x
My previous oncotype was 8 which is why I managed to skip chemo last time, even though I was 31.
I have already made my mind up on chemo, a 3-5% āpossibleā benefit just isnāt enough to put myself through it. My oncologist is refusing to give me a second oncotype test (even though Iām private and my PMI said they would pay for it ā¦)
My cancer seems to be fairly ālazyā. The fact that it took almost 11 years to grow back, only 2mm thick, reinforces that.
I just want to carry on with my life. Its been cut out, thats the main thing.
I am not naive to think I am going to be fine - the fact it grew back is a bad sign, Iām very aware of that. But the treatments I am being offered are going to significantly alter my quality of life for the next 5-10 years, for very small % benefits. When my oncologist said chemo would āsignificantly help by 5%ā I said āthe 95% chance it wonāt is a more significant number to meā.
I am comfortable with my decision to just take tamoxifen - i think I just need everyone else to be lol xx
Iāve had the kitchen sink thrown at me. Diagnosed at 38 three years ago - mastectomy, chemo, radiation, olaparib followed by abemaciclib (currently taking), oophorectomy and exemestane (currently taking). My quality of life is excellent. Iām at peace knowing Iāve done everything I possibly could. My cancer was stage 3 grade 3 though, so a very different scenario. Iām writing this just so you know treatment doesnāt necessarily mean poor quality of life, but I understand in your circumstances the benefits are not as clear. Good luck and all the best x
Itās a huge decision that youāre making and being on the forum you will receive lots of different opinions. The main thing is that you make an informed decision and no you are not going mad, Itās your life.
I donāt know anything about oncotype scores and odds, Iām someone who didnāt ask any percentages, all I knew was I had cancer and wanted rid of it. Iām still in the dark on what the odds are for recurrence etc and am just going with my routine based on what I have learned and trying not to dwell on the odds. Itās 5 years this year since I finished treatment.
Over the last 5years I have come across some pretty decent books to help me with my quest for knowledge and define the things I can do to help keep cancer away. Here are my favourites and most interesting.
The first is an article, this I believe to be the most important. A man I knew that was given 6months to live and beat all the odds for over a decade:
Then thereās:
Chris Beat Cancer - Chris Wark . Chris also has the āsquare one programā too that is free every so often, itās worth looking him up.
Breaking the cancer code - Rubio/Geronimo
Radical Remission - Kelly Turner
I did read on this forum recently that not going the prescribed route may mean that other medicine options become unavailable. Might have been something to do with saying no to one thing means saying no to it all? Thatās something your consultant would confirm.
Hope this is of help for you to find your way through this. Xxxx