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
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
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.
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
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
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.
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.
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.
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 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.
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!!!
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...