No Tamoxifen for Oestrogen + grade 1 invasive ductal ?

[Kerryjp]

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@Shelsy wrote:
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

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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

[Kerryjp]

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. 

[Pat2]

I have been on tamoxifen for 18 months and the side effects seem to be getting worse. I too am thinking of stopping. I don't feel as if I've got a life at the moment because I also have lots of other health related problems x

[familytree]

Mags 

was tamoxofen about 17 years ago? This thread is so interesting although I have realised it was started some time ago so not sure if it's still active x

[familytree]

Hi Faith 

I feel in a similar dilemma but have to say I was never asked whether I wanted hormone treatment just prescribed it so I didn't question it. I am shocked at the percentages people are mentioning, they seem so low for all the trouble?! I was prescribed Letrozole because I have gone through menopause (at 42 it was over!) but now my bones have shown osteo the Preston onc is saying to change to tamoxofen but the wigan onc who did the op says no.. stick with letrozole they are better performing in trials! he prescribed vitD and calcium along with a bone building tablet (which I am scared to take after reading papers on them!) Preston onc says for the percentages its not worth the bone deteriation letrozole causes. Despite the differing advice they both say to take the bone builder. I am more than confused as to what to do! 

Hey, nothing is simple in the BC club is it! lol

love Lorna x

[Mags2]

Just to say to all you ladies that I have refused hormonal treatment. This is my second primary breast cancer and took tamoxifen for 5 years and it has still returned although it is 17 years ago. Consultant said it would only give a 2% chance of it not recurring again and didn't think that percentage was worth all the side effects. Hope this helps someone decide.

[Helm]

I feel for you all! I've been on hormones since 2013 and feel like crap. At one point I considered stopping taking them and discussed this with my Onc. But when it came down to it the fear of recurrence took hold I'm sad to say. My quality of life is low in that I feel rubbish every day (and I know its the meds, because if I stop taking them I feel better...), I'm on ESA because of it. It's a real struggle sometimes to decide whether to continue, but at the end of the day I really don't want to go through chemo again, it was awful. 

It's a tough decision, but each person has to do what they believe is best for them, and what they are happy with, and not just because the doctors say so. 

[lola111]

I was lucky to have care from two sets of oncologists as I went to a different health authority for my radiotherapy.  All the oncologists I met recommended that I try the Tamoxifen but did not insist upon it.  As you will see from my post a few days ago,when I expressed how I felt about being on Tamoxifen for years to come the oncologist almost insisted that I stop taking it. This advice was supported by the oncologists at my local health authority.  Sometimes I think it is worth "testing the water" a bit.  If you say you don't want to take it then they will only really make a fuss if they really think that you must.  At the end of the day we are all individuals and not statistics.  Good luck and take care.

[Rosemaryanne]

Also grade 1, 2 lesions, ER+, WLE, 15 rads. Have been on tamoxifen for 3 months and I'm going to discuss coming off it when i see the onc in June. I hate the weariness, nausea, hot and cold, aching and i seriously think I'd rather take my chances with recurrence than live like this for 5 years. And yes, the endometrial cancer risk is also a factor in my way of thinking. After all, no-one's going to come round to my home and force the tablets down my throat, are they? I feel it's time I took control back from the medical establishment.

[Cath3]

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!

[Cath3]

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!

[lola111]

You might find some of my earlier posts relevant to your dilemma, and before you ask for this medication think “be careful what you wish for” as the side effects can be difficult to live with.   You can also check the NICE guidelines to see whether they support your not having been offered hormone therapy. I had my WLE in September 2014 and my diagnosis was 10mm stage 1, low grade invasive, and oestrogen positive.  In December I had 3 weeks of radiotherapy and was offered oestrogen therapy - Tamoxifen as I have osteopenia (I am now 60 years old).  I took it for about 4 weeks and had some unpleasant side effects which perhaps I could have lived with but all my research and long term life prognosis (NHS Predict for example) made me doubt whether the side effects (mostly those you can't see and know about until it is too late, eg endometrial cancer) were worth the benefits.  The risk of the cancer returning where I had had rads was minimal, and the risk for my right breast were also minimal and only reduced by about half by the Tamoxifen.   I would still be alive in 5 or 10 years no matter what I did (apart from being run over by a bus or old age!)  When I told my Oncologist that I felt I had been robbed of my healthy drug free life she simply suggested that I throw the drugs out of the window.  "You will be monitored annually for 10 years and we will deal with it if it happens, but the risks are low."   She then quoted lots of research also referred to in earlier posts.  In conclusion I now wonder whether many of us who have had early breast cancer really need this medication - I think it's because of our natural desire to do everything we possibly can to prevent a re-occurrence - not matter what the cost.  But no matter what we all do we all still live in fear of it returning, Tamoxifen or not. At the moment there does not appear to be a 100% “get out of jail free card”.  Six months on from my rads I still feel tired at times and I am so glad I am not exacerbating it by taking any drugs.  I have improved my diet and that makes me feel like I am doing something positive and maintaining some kind of control - look at the recommendations on http://www.aicr.org/ which was recommended by the nutritionist on a Maggie Wallace anti-cancer/ post cancer nutrition course.  Despite these actions I still look forward to my first mammogram with trepidation! Good luck with your decision, there is a lot of information out there and not every oncologist you meet will have the same opinion which says something I think.....I hope this helps.

[Bettiboop]

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

[Ginny1]

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

[lola111]

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).

[Nenya]

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

[Ginny1]

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

[lola111]

I think it’s really interesting that your onc has a different attitude to mine - and I have found other examples on this forum. I was anticipating 15 RT and now they are talking about 18 - I didn't think to ask why (shame). Perhaps there is a difference between your cancer (other than 2mm) cancer and mine? I look forward to my second opinion at Addenbrooke's!

[Shelsy]

Hi Lola111
Thanks for replying, yes it seems we are very similar which again is why I don't understand not being offered any drug treatment I have no other medical conditions which maybe would have explained it I've just been told the risks outweigh the benefits but I am seeing my Onc again on Thurs as need more explanation/reassurance I've started my RT am on session 5 so far so good....Hoppe all goes well for you

[Shelsy]

Thanks Michelle the prob for me is that my Onc hasn't prescribed tamoxifen! And has said that according to the NPI it's side effects outweigh the benefits for me my concern is that I've never heard of anyone not having tamoxifen or other hormone therapy for hormone based BC. I've requested another meeting with her this week to discuss further but it's good to hear you haven't had any of the side effects we hear of for some.

[Michelin]

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

[lola111]

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.

[Faith50]

Hi Nolton9

Like you I had an embolisation 3 years ago but the fibroid regained a blood supply. However, all was well until I had to come off the mini pill due to the BC diagnosis and then I was back to the horrendous and prolonged bleeding. I'm now on zoladex and was supposed to be starting letrozole but now my gynae is questioning the treatment! He is worried about my bones and osteoporosis. I'm now in limbo again until he talks to the oncologist. I thought we were doing what the gynae would think best!

I hope all goes well for you with your treatment. I'd be interested to hear how you get on.

Best wishes

Faith50

[Nolton9]

Hi Faith50,

I had a very large fibroid, picked up during pregancy. Tried a couple of drugs to shrink it  (hormone blockers) which led to a huge amount of  heavy bleeding ,  complete opposite to what I was told to expect! Finally had it embolised which has helped with the "heavy feeling"  I also have endometriosis cysts which show up on scans. Periods never been a problem particularly.

Tamoxifen was quickly discounted for me as , as we all know it can cause thickening of the womb lining and mine doesn't seem to need any help on that front!....zoladex is the hormone therapy on the table for me, but I know that even that  can cause  irregular bleeding and fibroid aggravation in early days which makes me very , very nervous..

I don't think there is an easy answer, and I agree  it is very hard to weigh up all the risks and benefits of every breast cancer treatment and decide what to do..  even those who work in the area all day, every day seem to sometimes have a slightly different POV  from each other, which I find a bit of a comfort!!! I think you're right a crystal ball would help though!!!

[Faith50]

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

[Nolton9]

Hi Shelsy,

My dx was a large area of DCIS initially but my post-op path showed a 2mm area of invasive, likely lobular cancer. My surgeon was always very positive about this size of tumor and my likely outcome so when I met with the oncologist I was expecting a similar view. The reality for me has been quite different, initially he said on balance a trial of zoladex would be appropriate but that as I would be closely monitored it was "my choice" (previous gynae issues so tamoxifen not poss) 

As it was my choice I have tried hard to educate myself on the basis and I have asked repeatedly over a period of months for numbers to support what the hospital claim is a small risk from my cancer, I have only just got them and like you the benefit of  taking hormone therapy is well under 1% to my survival stats. This only leads me to think " why am I being asked to take such a drastic step as an early menopause" for so little benefit and other possible health minuses.

I have tried to have a  discussion with the hospital on this but have been made to feel like I am , frankly, a " "loopy-treatment-refuser" (despite earlier masectomy and recon) lots of comments about "we will need to keep a really good eye on your other breast then" " what is your problem with the menopause you're 40 not 20"..... comments that just uttterly feed into my fear at this early stage (and anyone I guess who has had BC that this could WILL, rather than possibly come back) I do understand that I am a greater risk than normal of a contralateral event given my age and previous experience but it still seems such a one size  fits all approach.... and delivered without any understanding or willingness to even discuss options or acknowledge what is being asked

One of the BC nurses did say that being on the borderline of benefit is a tricky one to make your peace with.

I'm planning on speaking to a few more people, perhaps another oncologist, the BCC helpline staff have been very helpful in helping me understand my risk and be comfortable with it...six months out from diagnosis with active tratment finishing, I feel very, very vunerable on this front, for now...

So, I don't think Ive been much help for you but it was good to see your post and be able to air... 

[Maryland]

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/PR\HER2+ 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

[Shelsy]

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