Hi
I was really happy to get my results a few days ago - which was that my lymph nodes were clear and that my mastectomy had apparently got rid of my (high-grade) DCIS.
However, I know two people (one in their late 40’s another in her early 60’s) who are now on Tamoxifen for 5 years to prevent recurrence. However, my surgeon said I needed nothing else (I’m 42). I am really surprised by this. I’m not keen to go on Tamoxifen, but then I’m not keen on getting this back either. Can anyone shed any light on this? Has anyone else not been offered Tamoxifen after mastectomy for DCIS?
I was dx with high grade dcis, and was originally told that I would only need mast. But when I went back for my results was told it was very close to chest wall so they wanted to give me 15 sessions of rads, have finished these and now have to go back to oncologist on 30th Jan have not been told whether I shall need any further treatment. I am 53
Hi L
Definately speak with the people in the know, but working in the medical/pharmacy profession, I seem to remember reading something about and if you have DCIS and have breast preserving surgery + rads and the tumor is hormone receptive then tamoxifen is recommended as adjuvant Tx. If you have a mastectomy then you should not need tamoxifen.Make sure that you get a proper, understandable explaination as to why you don’t need tamoxifen to put your mind at rest… as if we haven’t got enough to get our heads round!!
I have an 80 yr old friend, in great physical health, dx 2 yrs ago, and had WLE, no lymph node involvement and ER+. She was not offered any post surgery/rads hormonal treatment. . After talking to me (having been dx in 2003) she discussed her situation with her Oncologist and she got Arimidex - obviously post-menopausal. She has no side effects and is doing fine. Does make you wonder if the rusty wheel gets the oil!
I would need a very cogent explanation as to why when you are quite young at 42 yrs, and ER+ you are not being prescribed hormonal therapy. I would think It should be tamoxifen if you are pre-menopausal and Arimidex if post-menopausal. However, I am not a cancer doctor, so can only give you the experience of my own dx and treatment and extensive research.
Be proactive - it is your life, not the doctors - and you are entitled to whatever drugs are available to prevent a recurrence.
Have to echo Gurgle etc and say it depends if you’re hormone receptive or not. Though met up with friend of a friend yesterday who is triple negative and is still on tamox for 2 years?! So, not definitive. For the record, I’m ER+ and HER2- so there you go…
Thanks so much everyone. I was so delighted and relieved that my nodes came back clear but then slowly the dread feeling came back and I felt…I don’t know…dread!
I am going to see someone definitely - the sooner the better. Just to set my mind at rest. I wonder if I will ever truly relax though. I’m sure I read somewhere that it is more likely to come back if you are younger. Oh who knows…?
I have been started on Tamoxifen as I was ER+ but my doctor didn’t express himself in terms of 90% he said I was 7/8.
I would check what he means by 90%.
I have looked at the NICE guidelines (National institute for health and clinical excellence) and they do not have all of their recommendations for breast cancer published yet, but there is a guideline about hormonal therapy post menopause which looks at drugs " after the standardTamoxifen has been given."
Might help when you talk to your doctor.
Hi Sandra,
Do you mind me asking - did you have DCIS - and what grade? And how old areyou? These are factors maybe for if they start one on tamoxifen or not. I am pre-menopausal - age 42 and had no previous history of b. cancer. Just DCIS high grade and had a mastectomy because the affected area was about 6.5cm - too large to get out any other way.
Hi Yes I did have high grade DCIS in several areas so had to have a mastectomy. The histology on my poorly left breast showed that I also had Pagets disease of the breast (another rarer form of cancer apparently)
I am 50 (thats how I got diagnosed on my first mammogram) but am also pre-menopausal still regular as clockwork…
Mine was high grade DCIS, I’m 54 now, 53 when it all began. I am still having my periods,…groan… so I was told I would need to take Tamoxifen for the next five years as I am oestrogen receptive.
I had my mastectomy last June and I also had clear lymph nodes.
I, too, did not have tamoxifen, although a few years following my previous MX, for high grade DCIS, had pagets, so had the nipple removed. Now have DCIS, intermediate, and due a maastectomy on other side, some 14 years later.