Hi there
Can anyone give me some advice?? I know the obvious choice would be my consultant, Onc or GP but feel that I wouldn’t get a neutral response!
I was diagnosed July 09, had a WLE but then needed a MX,(didn’t get clearance) so opted for a bi-lateral MX. Had lymph node involvement but was so minor they even considered it negative. Have been tested as ER+ but not sure to what level yet?
Going through chemo at the moment, only 2 more cycles left but am really really considering the option of not having Tamoxifen. I don’t need rads as there is now nothing to zap! my risk of developing BC again is minimal (1%) as there is now no longer any breast tissue left.
So what is the benefit of taking this hormone therapy? if there is minimal risk of re-developing BC??
please any advice on this would be so greatfully recieved. I have heard both the positive and negative aspects in relation to the side effects so am so confused.
thanks
Soph
I know how difficult these decisions are but I would say definitely go for it. It is a gold stadnard drug (still) and reduces the chance of a recurrence.
Most (90%+) women suffer little or no side effects and you could, like me, be one of those. I am not beliitling the experience of those women who do have side effects but remember that those who sail through it are less likely to post here.
The other thing to remember is that, it is not an irreversible decision. If you are unlucky and do have side effects you can review it with your oncologist and stop taking it.
Give yourself the best chance bearing in mind you can always stop and the side effects will go away in a few weeks I would say. Of course it is your decision though.
Hi Soph,
Sorry you are in this position and I agree with you - there is no easy decision. Like you I had WLE followed by MX (one side only), and lucky enough to have no lymph node involvement. I had to choose whether I wanted chemo or not (borderline, as only 4% benefit). I chose not to have it.
I agree with Judie63 in that there is no harm in trying tamoxifen to see how you get on with it. You can always come off it if necessary.
I have just tried it for a few weeks, but stopped taking it a couple of weeks ago after developing a very itchy rash, slight nausea and feeling weepy. (Any/all of those may or may not be related to the drug - we don’t really know).
Blood tests indicated irregular liver function, which has improved a bit since I stopped taking the tablets. I am due some more blood tests in a couple of weeks, which I hope will confirm the same.
My GP and I have agreed to discuss things again later, to decide whether or not to try another drug. I consider my % benefit of tamoxifen (also 4%) to be low enough not to bother with any hormone therapy.
Do talk thoroughly with as many people as you feel appropriate. I feel I get slightly different slants/bias from each of them, so take a kind of composite view to make my decisions.
Don’t know if I have helped at all. Good luck with everything, including your remaining chemo 
Hi there, I can only comment on how I viewed it for me. I was grade 2, no spread didn’t have chemo but had rads but I was 8/8 for oestrogen and progesteron, it was a no brainer for me. I take the view that cancer for me was random but I’m obviously pre disposed to it and as it was so hormone receptive I want to do all I can to make sure I’m not giving any future mutant cells a helping hand by not feeding them oestogen. I’m one of the lucky ones so far too in that have had no side effects from tamoxifen whatsoever, good luck .
Sandra x
Hi Soph
Had WLE then mastectomy due to position of the lumps and nature of the cancer - lobular. Grade 2, no lympth node involvement, just 3 weeks of rads. ER8 tamixifen would give me a benefit of 2.4%, decided not to take it, that was just over two years ago now.
Will send you a pm.
m x
Hi Soph! I had a complete mastectomy and ANC. Luckily no LN involvent and small cancers grade 1. I am E-P receptive and after a lot of soul searching started on Tamox. I hated it and had to stop anyway ahead of my recon op, which was three weeks ago. However, I am feeling so wretched after my latest surgery (pain, rashes, fever, discomfort) that cannot face starting again yet. In my case, side effects included constipation, sleep problems, fatigue and headaches. If you add to that the two most dangerous SE (blood clots and endometrial cancer) I believe it takes a lot of weighing the pros and cons before sticking to the treatment for five years. I am still not quite clear of the benefits in my case (which are statistical anyway) and had have asked my doctors to give me a figure without much success. Basically, it seems it would protect my remaining breast.
I do not think anybody can advise you what to do. Tamoxifen is the golden rule and doctors will always prescribe it, but you have a right to get the whole picture and make your own decisions, I believe. If the potential benefits outweigh the potential risks, then it makes sense to go for it. As for the side effects, as they have told you, vary a lot from person to person. You can always try.
A fact nobody will tell you is that about a 10% of women do not metabolize Tamoxifen, or not completely. Obviously they have fewer or no side effects, and no protection:
dslrf.org/breastcancer/content.asp?CATID=19&L2=1&L3=6&L4=0&PID=&sid=132&cid=1146
Good luck with whatever you decide! xx
Hi soph, I decided not to take Tamoxifen,you need to look at just how much more you will gain from the drug.
Some ladies don’t seem to have many side effects and others struggle with lots for 5 years.I would encourage you to find ways of boosting your own immune system through life style changes, diet, supplements etc etc. I also read up on the drug and asked a lot of different people about it. Once you have heard both sides of the argument, then you will be able to come to a decision.
Best wishes
Leadie
Dear Sopker25
I think one of the first things you should do is to find out what percentage or ER+ and PR+ you are as this is very important. I was 100% so I would not consider not taking tamoxifen. I have a friend who has just gone back on it after a break of three months because she has found out she was 50%. She had the choice and has decided to go back on albeit she has side effects. I hope that is helpful to you.
Good luck.
Jeannie
Hi
Please don’t think I am being negative but ‘90% + have no side effects’??! Is there any research to support that statement? So many people report side effects I find it hard to believe that only 10% suffer!
Having said that, Tamoxifen is a life saver - I take it and suffer moderate SEs - mainly frequent hot flushes and joint pain - but wouldn’t dream of stopping it because of the benefits.
We all make our own decisions re treatment, medication, etc, but we want to be told the truth and then decide!
HI ALL
I am really struggling, and I know it’sthe tamoxifen , because I never felt like this before, been on it since march 2009.
The side effects I get.
flushes
joint pain
nausea
terrible cramps in toes, legs stomach etc.
feel spaced out sometimes
no energy
finding it hard to go on like this, but frightened to give them up.
Libby x
Dear Judy63,
I’d like to know where you read those stats on 90% women don’t have side effects. I’ve read that 37% of women come off the drug because of intolerable SE’s!! and they are the one’s that report it to their oncologists!
I’m afraid I don’t have faith in any drug being a gold standard, all drugs have side effects and drug companies deliberately try and play down the side effects.
Leadie
hiya
i hve to agree with Leadie about all drugs having se.
i personal suffering with se from tamoxifen been on it since June 2008 hot flushes, fatigue, lack concentration, joint pain and now have bone thinning but saying that some of these Se have just progressed from my chemo.
Poppet