My oncologist has left the decision up to me as to have tamoxifen and I’m very confused I had a grade 1 (downgraded from 2 after removal) invasive ductal small 8mil tumour oestrogen + , WLE and SNB no lymph node involvement.
No chemo prescribed.
I and am having 15 sessions of RT I thought that tamoxifen was always given for Oestrogen sensitive BC I have been told it was very sensitive to oestrogen. as much as I don’t want tamoxifen I’m worried that maybe I should? I’ve been told it will only make a 0.6% difference to my prognosis has anyone else had a similar experience? Thanks ladies xx
Hi Shelsy…my diagnosis was different to yours, so can’t help on a personal level. However, a colleague of mine has a similar diagnosis to yours (below):
A colleague of mine was diagnosed in July, very similar scenario to you. Very small, low grade ER/PRHER2+ with no lymph node involvement. She is 47 and had WLE rather than mastectomy. As the benefit of chemo/trastuzumab improved her 5/10 year prognosis by less than 0.7%, she agreed in discussion with her consultant to have radiotherapy to kill off any local stray cells and is considering Tamoxifen for 2+ years, possibly changing to an Aromatase Inhibitor, e.g. Anastrozole afterwards. There seems to be a real commitment at our local hospital not to ‘over treat’ and to genuinely take patients’ wishes into consideration…refreshing!!! She, too, is still sceptical about hormone therapy with such a very low 0.4% survival benefit, and will make a decision when RT finishes at the end of next week.
I posted this several weeks ago in response to another similar question…she has now finished RT and in full agreement with her team has decided against hormone therapy weighing the potential benefit against the potential side effects.
Obviously your decision entirely, and I would suggest research on reputable sites what you can, before discussing/agreeing with your team.
All the best whatever you decide…take care x
Hi nolton9
I don’t know about you but this hormone treatment question is by far the worst part for me. I’m just wondering what you’re gynae issues are? My bc is strongly oestrogen + so hormone treatment is strongly advisable for me. However with stage 3/4 endometreosis and a problematic large fibroid tamoxifen didn’t see like a good idea for me. I’m 50 and wasn’t yet in menopause. So the oncologist put me on zoladex and I was then supposed to start letrozole. I saw the gynaecologist on Friday who questioned the treatment because I’m slim tall and fair and he was therefore about my bones! He’s going to chat with the oncologist who fortunately he seems to know well. I’m so worried whichever way we go because tamoxifen is likely to worsen my gynae problems and my periods are uncontrollably heavy and prolonged now that I’m no longer allowed to be on the mini pill. The zoladex has stopped my periods for now but if the gynae reverses the decision to go on it I’m back with periods that confine me to the house and I have no quality of life. Equally I don’t want to end up with debilitating osteoporosis. Neither do I want the cancer to come back. I’m at my wits end and feel caught between a rock and a hard place with this.
I hope you manage to come to a decision you feel comfortable with. I guess we all could do with a crystal ball!
Faith50
Hi Shelsy, it sounds like you and me are in very similar boats. My cancer was invasive ductal small 10mm, WLE and SNB no lumph node involvement, no chemo prescribed. The cancer was ER+ 7/8. I will have 18 sessions of RT, 15 therapeutic and 3 to zap wherer the tumour was - at least that is what they would do at Mount Vernon. As I am keen to get IMRT I have asked to be referred to Addenbrooke’s - subject of another thread - and I don’t know whether they will offer it there either - but at least Addenbrooke’s is more local and it will offer a second opinion.
Originally I was put onto Letrozole, but as I have osteopenia and as it made me very nauseous they have discontinued it and proposed Tamoxifen.
Apparently radiotherapy will reduce the risk of cancer coming back in my left breast by 2/3 – so I have a 3% risk of the cancer returning in my left breast which will be reduced by radiotherapy to 1%. The hormone therapy will further reduce the risk of cancer returning in the left breast from 1% to 0.5%. For the right breast I am not sure but the consultant mentioned that I had a 25% chance of cancer developing (versue c. 10% for your average woman in the street), so presumably the hormone therapy will reduce that risk by half to 12.5%, although I am a bit unsure about this (or an extra 2.5% compared to the average woman in the street?) I will need to find out though as like you I really am hoping to be able to justify to myself that I can ignore these drugs. Wouldn’t it be nice to get the RT over with and move on, so to speak, and no massive “sword of Damocles” hanging over me? I will keep you posted.
Hi Shelsy, I have a very similar situation to you - invasive ductal cancer in the left breast, diagnosed after routine mammogram. Had WLE, 15mm tumour, no node involvement. Had 15 + 3 treatments of radiotherapy.
Started on Tamoxifen in June - and been on all three brands! For me, I don’t really think I thought about having to make a decision about whether to take them or not, I just wanted to do all that I could to stop it coming back so just took what my oncologist said. Before this, I hadn’t been to the doctors in years, didn’t take any tablets so I don’t want to take anything unneccessary. I’m 54 but wasn’t yet in the menopause and the only side effects I have had is that my periods have stopped. I may just be very lucky that I have not experienced any side effects.
You have to feel comfortable about what you do and nobody can make that decision for you. You have to do whatever feels right for you.
Michelle
Hi Shelsey
I came across your comment on the forum & I too was diagnosed with grade 1 incasive ductal bc & had WLE with clear sentinel node. I was advised by oncologist I did not need medication taking into account my age (61) and low grade tumour despite being oestrogen positive. I was pleased not to need medication & I’m on my third dose of radiotherapy. I was a bit confused when I was told i didn’t need medication but relieved. Hope you are getting on ok. Ginny1
I’m in a similar position, aged 58. WLE and SNB , just had 2nd of 15 rads. My oncologist gave me the choice of 5 years tamoxifen, 2 years tamoxifen and 3 years letrozole or 5 years letrozole. I have opted for the letrozole. Mainly because of sweats, weight gain and cholesterol issues with tam. I am pleased to take anything which will increase my chances by a tiny amount. I have a lot to live for xxx
I am sorry if this sounds garbled but it is a complicated subject and I find it difficult to articulate. I had my WLE last September and rads in December. I opted for a hospital that offered IMRT and by doing so benefited from a more relaxed policy of only 15 sessions and no boosters. I was lucky to be cared for by a very forward thinking and reputable oncologist who supported me when I asked to not take adjuvant medication - in my case Tamoxifen. To get things in perspective - I had a 10mm tumour, grade 1 and it had not spread into my lymph nodes. After talking to my oncologist (after rads) I wondered why I had been so desperate to have rads (they really mucked me about) - but I didn’t know then what I know now…and of course I was lucky to have very low risk early breast cancer. It’s all a matter of how you want to live with risk of it returning - all of us are having to learn to live with that risk whether we take adjuvant therapy or not. By having rads I reduced the risk of it returning from c.5% to c.2% - or in other words 95 out of a 100 women with early breast cancer will not have a recurrence with or without rads, one women will have a reoccurrence no matter what they do - and there is a proposal to stop offering women rads when they have low risk early breast cancer and to simply save the rads for reoccurrences – that way the ammunition is saved for later rather than used up front. I think I would have lived with that risk. My trouble was that I wanted to minimise the risk as much as possible as that is how we all tend to think – but how much do you want to lose in terms of quality of life when you are reducing your risks by such a small percentage.? When I asked my oncologist about what would happen if I did not take Tamoxifen and the cancer came back she said" we’ll deal with it as we are monitoring you, but the risks are very low". I have my 6 month follow up next week and I have to live with the possible consequences of my decision to stop taking Tamoxifen. (although I have taken other steps like radically overhauling my diet and starting to strict regime with exercise and fitness, all good as that makes me feel like “me” again).
Hi Lola
I was interested to read your post. I am undergoing radiotherapy following lumpectomy for a grade 1 invasive ductal bc with clear nodes. My tumour was oestrogen positive but after a discussion with my oncologist I do not need to take medication which I was relieved about. I am 61 by the way & post menopausal. My tumour was 16mm & was removed with clear margins. His rationale for me not needing to take medication was based on my pathology and taking into account my age. I hope you get on well when you see your consultant & I wish you all the very best with your treatment.
ginny1
Hello Ladies. I wonder If anyone can help me understand this. I had a WLE with clear margins, the smallest margin being above 1mm, for DCIS. It was high grade and 11mm. It was also oestrogen positive. I am getting 25 sessions of radiotherapy but no hormone therapy. Is this unusual? I thought if it was high grade and oestrogen + I would automatically get hormone therapy. I just want to have every thing done to stop this returning in the future. This is such a helpful forum. All you ladies have so much information and experiences. Thank you all. X
Wow, I am so glad I’ve found all of you. I have had grade 1 9mm DCIS removed which was ER 8/8 positive and 7/8 PR positive. I’m a competitive cyclist and pre menopause in a new relationship with no dependants aged 49. I have been recommended 20xRT and tamoxifen for 10 years which seems so extreme. Having read you comments, I will explore further options - it’s the pills not RT that worries me most. The leaflets, though helpful just highlight all the negatives over and over!
Wow, I am so glad I’ve found all of you. I have had grade 1 9mm DCIS removed which was ER 8/8 positive and 7/8 PR positive. I’m a competitive cyclist and pre menopause in a new relationship with no dependants aged 49. I have been recommended 20xRT and tamoxifen for 10 years which seems so extreme. Having read you comments, I will explore further options - it’s the pills not RT that worries me most. The leaflets, though helpful just highlight all the negatives over and over!
I should have updated this earlier.
I saw my oncologist recently, and having given it a lot of thought, and discussed it with him, I’ve decided not to take the hormone therapy.
The NHS predict showed only a very small %age difference in outcome if I take it, so we decided that I’d steer clear.
But it’s an individual decision - a good friend of mine who is 3 weeks behind me in her cancer journey has jumped at the chance of increasing her odds of survival, and is happily taking her tablets, side effects and all.
Your journey sounds almost identical to mine.
The reason I’ve decided against hormone treatment is that I am very sensitive to hormone changes. I have struggled with depression all my adult life and the menopause …well, it was he’ll for both myself and my husband. I’d the hormone treatment caused further mood swings, well, the chances are I wouldn’t survive long anyway. I know myself…
Only you can make your decision for you, but let me know what you decide. Xxx