Maybe someone else is in the same boat as me. Had DCIS. Had lumpectomy. Cancer was only 2mm and margins clear. (Downgraded from Grade 3 to Grade 2). All positive. Radiation oncologist suggested since so tiny I could go either way with partial breast or opt out. I opted to go for it. Will be upcoming shortly.
I am very much struggling on whether to take the drugs to avoid re-occurance. I have an appt with medical oncologist tomorrow who originally suggested tamoxifin (post menopausal & have osteopenia). I have spent countless hours reading about this drug & even others. I am so beyond scared of side effects that could hinder my quality of life that I feel I am even more scared to take the drugs than reoccurance which I was told if it ever came back it could be DCIS or Grade 1. They said its not in sentinal or lymph nodes (they did not biopsy either but said based on scans they did not look ‘abnormal’ so they did not take a piece to test).
I eat healthy - always have - but healthier now and losing some weight. Take lots of different supplements & food conscious.
Has anyone else here opted ‘out’ of taking the drugs on my specific type/grade of cancer that is doing radiation. If so - how long since your diagnosis and cancer free?
Endocrine therapy is scary for all of us and we have to weigh risks versus rewards. For those of us with IDC, the rewards normally far outweigh the risks. But DCIS is a little trickier. I would suggest talking with your oncologist at length about all of your concerns. How likely is it to return if you don’t take the medication? How likely is it that it would return as invasive? And then decide how risk aversive you are. I will remark though that many of us on endocrine therapy do very well with it and don’t really notice many side effects. I’m one of them. So it might be that it isn’t a big deal at all if you were to take them and of course if you find that tolerating them is hard, you can always quit. Good luck in making your decision!
Hi there…i had dcis low grade 4mm ER positive …had WLE …no node involement told i had 98% chance of no recurrence…took tamoxifen for a year …didnt get on with it…6 years later had a recurrence …this time 34mm …of fourse theres no sqying thatcwill happen with you…adk yourself what you can live with …are you a risk taker? Make your decision and live happily with it …no one has any crystal balls…some people have aggressive cancers that never return …whatever decision you make , make sure its informed…and it will be the right one for you
I was also DCIS lumpectomy and radiotherapy and put on Anastrazole which I was very unhappy about due to the many silent side effects. I questioned it and they ran the predict tool and agreed with me it was of almost infinitesimally small benefit so I didn’t take it. I pray I don’t live to regret it but they couldn’t say it was of any real benefit to take it
I had IDC so can’t comment in terms of similar diagnosis, however, I did just want to say I was also terrified about tamoxifen as I knew how long I’d have to be on it (10 years), so if it was as bad as I anticipated it was a long time.
However, minus a couple of weeks of nausea at the start (that I didn’t even know was a SE), I have settled very well with it and side effects are very minimal.
It’s easy to focus on the horror stories but there are people who cope really well.
As many of the others have said, it’s such a personal choice and you do have to weigh up the pros and cons and how risk averse you are. It’s so tough I know and none of us want that decision.
What i can say is I was petrified of starting these drugs. I was told it had to be an AI and farces letrizole…… I agonised for 2 months and got myself into a terrible stressed state whilst I plucked up courage to start. I’m now over a year in and can honestly say I’m fine.
I do have the odd achy joint but I did before and so I’m just getting on with it. The best decision I made was to just try it. My oncologist was great and said if it didn’t agree with me she would change it, luckily that never happened.
I know it’s scary but don’t let the side effects of others put you off. We’re all different lovely and you won’t know how you are until you try. As Kay said … some of us tolerate it very well.
All the best to you. Big hugs xx
One of the main considerations, is age and quality of life. I am now 79, and had similar, Letozole, low risk, no RX as asked for 2nd opinion and missed the ‘window of opportunity’. Awful SE on that, so came off, and have tried Aromasin since, fewer sE but VERY dry skin, and wrinkles which I never had before as took HRT for 30+ years till had to stop cold turkey on diagnosis! I have decided not to continue with the drugs, I can’t be making much oestrogen now anyway, but it is needed in so many different bodily functions! Good luck with whatever you decide to do!
Hi everyone, new here and not sure this thread is still active.
I scored 1% on predict. Have been told should take letrizole and ovarian suppressants (as have had DVT in past)
I am grade 1 6mm, nothing in lymph nodes, finished surgery and radiotherapy, I’m scared of the side effects of these drugs, I’m 50 years old.
Stuck in dilemma of- take them and have potential awful side effects plus risk of osteoporosis/ arthritis/ cardiovascular disease… or don’t take them and risk recurrence or secondaries. I feel awful enough being off HRT and the thought of being plunged into deepest menopause plus side effects is frightening.
Would love to hear experiences of those taken letrizole and ovarian suppressor and experience of recurrence / non recurrence of those not taken hormone therapy. X
Sounds like we are similar, I am a few years short of 50 and have just had lumpectomy and radiotherapy for 16mm IDC, ER/PR+ HER2-. It was grade 1 and prosigna gave me a low recurrence risk (24 where under 40 is low.) Predict v3 is giving 0.9% benefit at 15 years for 10 years of hormone therapy (0.7% for 5 years).
My oncologist’s view, in line with national guidance (I am a brit but not being treated in the UK), was that hormone therapy was not to be recommended. I was a bit surprised as I’d the impression that in the UK ER/PR+ IDC is an automatic route to hormone therapy. But with long term outcomes here better than the UK for breast cancer at all stages I’ve been happy to follow the advice.
I know I could get cancer in the future and wonder ‘what if’ but I doubt anyone facing reccurrence escapes that. I am concentrating on getting fit and strong for current and any future health challenges.
Thanks so much for reply. They retested predict and it is 0.3-0.6% so whilst I haven’t been told categorically not to take the drugs it was implied not to as the side effects of bombarding body with ovarian suppressant and aromatase inhibitors outweighed the tiny benefit of the drugs in my situation. It’s a tough one as the decision now lies with me… but I think I will concentrate on well being and get on with life. It would have been much easier if they had told me not to take them … but it was heavily implied … X