Not taking tamoxifen??dilema Anyone else chosen not to take tamoxifen…just wondered. something to do with fear of all the side effects, am premenopausal and 18months down the line for IBC + full mastectomy at 40.
Have a fear of tamox wrecking me physically in other ways as am already trying to deal with the lack of breast and CA diagnosis. time is helping, but there is a backround fear…didnot have chemo so consider myself low risk and very very lucky indeed… any thoughts?
S
Hi Sarah Have you discussed your decision fully with your medical team? Do you know what the predicted difference in survival rates is for you if you do or don’t take tamoxifen? If you have IBC (Inflammatory breast cancer) then this is usually considered one of the most aggessive kinds of breast cancer and if your oncologist has recommended tamoxifen then I would think very carefully about whether not taking it would significantly alter my risk of a recurrence (and of survival.)
I think its fine to make decisons about not taking recommended treatment but also think its important to know the implications. Everyone’s cancer is different so what’s right for one person isn’t necessarily right for another.
I’m not on tamoxifen because its not suitable for my type of cancer (triple negative) but I often wish I did have the ‘safety net’ of a drug to take to perhaps prevent recurrence.
Hope you get some other replies from women who are on tamoxifen (yes some get bad side effects but not everyone.)
best wishes
Jane
Hi Sarah I was really scared about taking Tamoxifen when I read about all the side effects, but I have now been taking it for 4 years! I have had some hot flushes, but no other side effects at all - in fact for the first few months I wondered if it was actually doing anything!
As Jane says, it can reduce the risk of recurrence, and if you have been offered this safety net, I would think long and hard before you reject it. I’ve even been discussing with my medical team what I can take next as I shall come off it next January.
Take Advice Hi SaraD
I understand your concerns regarding side effects of tamoxifen, but as JaneRA says in her post, it is always recommended that you don’t make decisions regarding not taking recommended medication without first having discussions with your medical team.
Kind regards
Online Host
Breast Cancer Care
Why not try it and see? Hi Sarah,
Our cases aren’t exactly similar as I’m post-menopausal and my tumour was small and on the benign end of the Grade 1 spectrum. I had a WLE and rads, didn’t need chemo and started to take tamoxifen, but came off it after two years because of vision disturbances (a very rare side effect) I was considered so low risk that I wasn’t offered an alternative such as Arimidex. Five years after stopping tamoxifen I had a recurrence (outside the rads area) under the original lymph node scar. Obviously there’s no way of knowing for certain whether I would have avoided this if I had taken the full five years of tamoxifen, but my guess is that I would.
As the others have said, to reject a known safety net for fear of side-effects which may well not happen (I had hot flushes but nothing else, until the vision problem started) is probably not a good idea, especially with a very aggressive cancer like IBC. Surely it would be better to take it and see what happens. If the side-effects are intolerable, you can do what I did and stop, but at least you will have tried.
Good wishes, whatever you decide.
Kathy
Agree with Kathy Hi Sarah
I have been on tamoxifen since August and before I started with it I was very anxious about the side effects - particularly as I had read about the experiences of other women writing on this site who were having a tough time with side effects. The thing is that you can get a skewed picture of things here sometimes because inevitably people talk about the things that are causing them problems - but that doesn’t mean that everyone who takes tamoxifen has difficulties with it.
For me the only significant effect has been hot flushes but I don’t really mind those (they are more interesting than unpleasant !). Why not try it and see - you may find it much easier to deal with than you fear.
Good luck with whatever you decide.
Kate
sarahD I also agree with what jane has said…i have been on tamoxifen since may 04 and yes the menopausal symptoms can be unpleasent…hot flushes, night sweats…but i have managed to control these with accupuncture recently.
I would say give it a go and see…and discuss options with medical team before deciding against…it’s another treatment that may help reduce your chances of recurrence etc.,
karen
Just like to say that i’ve been on Tamoxifen for about 14 months and have had no noticeable side effects at all, so you may have nothing to fear. In my case, i was told that taking it increased my chance of survival by about 13% so i guess i’d probably have put up with any side effects to improve my chances significantly.
Kelley
To take or not to take! My tamoxifen tablets sat on a shelf for 3 weeks waiting for me to have the courage to take them, after chemo I just couldnt cope with anymore side effects. I telephoned the BC nurse and told her I hadnt taken them yet, she advised me to start taking them as prescribed. Like a good girl I took one that night - took it with a glass of milk (read post somewhere along the line this helped) went to bed and thought I was light headed (I think I was so scared that I would experience all the side effects), I can honestly say I’ve had none apart from the hot flushes, these started at the end of the chemo. The way I look at it is most women will have hot flushes whether they have BC or not, I’m just getting mine a bit earlier!!! Its a safety net and one put in place to help, try not to be put off by the poor ladies who experience lots of side effects, there are a lot of us who luckly dont get that many.
Clare (S)
Hi sarah Like you , I was a bit worried about the side effects of tamoxifen. I was 41 when I had my mastectomy. I had chemo before my surgery and radiotherapy after - at my age I thought it was best to take all the treatment I was offered to give myself the best chance.
I had a few hot flushes to start with, I don’t really get them now but I don’t tolerate being hot as well as I used to. Apart from that I’ve had no other side effects apart from infrequent periods. I’ve been told that I’m possibly now peri-menopausal so it could be that or it could be the tamox, either way it’s not a huge problem.
It may be worth giving the tamoxifen a try - if you really don’t get on with it you can always change your mind later - after taking your docs advice, of course.
Best of luck
Please think carefully! Hi Sarah,
I post on a US site similar to this and have become close to a girl who refused Tamoxifen. She went on to develop extensive mets to her bones,lungs and brain (50 tumours in all.) Her life is now an constant round of weekly chemo, whole brain radiation and clinical trials. Her face is unrecognisable from all the steroids. She will probably never get her hair back. I love her and it breaks my heart.
No-one will ever know for sure whether Tamoxifen would have prevented all this but I know it is something she thinks about every day.
Please think about this very carefully. If you are concerned about not being able to get pregnant (as my friend was) your doctors can discuss ways around it. If it’s just the fear of side-effects can you not at least give it a go? Many women seem to tolerate Tamoxifen pretty well with little or no side-effects.
I’m due to start it soon for five years. I’m not exactly chuffed but when I think of Nancy I know there is no choice, at least for me.
Lola x
Gosh, well, prompted to think… Hi all, I cant believe what has been a niggling thought for some time and this a place to register/release it in a more private way has evoked so many responses. I thought at the very least if anyone replied you would think i was very stupid, especially since lots of you have had awful treatments like chemo and I only talk about a small pill... So, thankyou for all your thoughts and experience related comments. I find it hard to get to the site often so am grateful for to have got here and posted. I was always rubbish at taking pills or medecines. I have always been a get up and go person and fight it off wotever. I think this is different.. I think that because it was such a surprise event BC and that there is no history in the family and that i have always been very well, that its hard to see how taking the tablet will benefit... It does bother me I am not taking it, I feel tremendous guilt and and do worry if the cancer will return. I do not feel able to speak to my medical team. My BC nurse was a very nice lady, my surgeon, really fantastic, butI have always felt inadequate about what to ask and how and rushed out the door. I do not go to the Dr unless its a child who requires assistance as I get very nervous about being there. I dont know what else to say for the moment, apart from thanks again for responding. I will think ( at length believe me) about what you have said.
Understand your concerns. Hi,
Like you I was reluctant to take tamoxifen . I felt very strongly that after surgery and rads THAT’S ENOUGH NOW. The thought of taking a drug that may have side effects that will constantly remind me of this nightmare which started in July 06 completely horrified me.
However I couldn’t square this completely in my head, and that bothered me. This drug has the potential to prevent recurrances. I know it’s on % probabilities but I can’t live with the doubt that I could be the person to whom it makes the difference. Some of the strength of feeling I had previously was fuelled by denial that any of this had happened at all.
So I have started taking it, too early for side effects I think because it has to build up to a certain level in your body, but we shall see. I feel heartened that not everyone who takes it experiences multiple side effects (keep posting, gals!) and I know I have made the right decision for me because I feel a sense of peace whereas before I felt conflicted.
Good luck,
Barbara xxx
I’m not Hi Sarah,
you asked if any one had refused to take Tamoxifen, I have. I was originally on Arimidex for about 2 months; the joint pain and mental confusion were horrendous. I stopped taking the medication on my GP’s advice. By the time I saw the oncologist I felt wonderful. I was told that the Tamoxifen could cause similar problems. I decided not to take any medication.
I’m 58 – I need to pay a mortgage, look after my hubby how has had 4 strokes. I feel that since the oncologist tells me he considers me to be cancer free after a wld, chemo and rads, I can make this decision. I would recommend that any one thinking of doing as I have – to think very carefully about their goals.
Remember it’s easier to change your mind and stop taking it – than asking to be put on it. Time is on your side while you find out how much benefit you will get from taking Tamoxifen.
best wishes Glo
Thankyou glo… for writing.
and you sound like you are doing really quite well for it too, better quality of life, as the arimidex sounded rather poor…, although I donot underestimate perhaps how difficult it is to keep it all going. I think you are brave making your decision, but at least there was some medical opinion behind what you were doing.
I still haven`t got that far. I think lots of ladies here have made wise comments to me. theres a stubborn bit saying I should be proving that breast cancer was just a blip and be strong and do it on my own, but inside thats quite erm hard to really admit, and there is a nervous feeling about what if…and I guess the pills are security…
I still seem to have all sorts of silly hangups about 1 breast etc too which cloud me, I have thought about it a lot.
I think I probably need to talk to someone, but have yet to decide whom.
thankyou
S
It it helps Hi Sarah
I just read your recent post and my earlier one. Hope I didn’t come across too harshly. I’m just really worried about my friend, Nancy, and wanted to urge you to think carefully before making a decision.
You say you find it hard to know what to ask and how to ask it. Most people are the same. If it helps, my understanding is that it is all about risk and how much the Tamoxifen will reduce your risk.
Basically your surgeon or breast care nurse should be able to give you some idea of how likely you are to get a recurrence based on the stage and grade of your cancer, your age, treatment, and how strongly hormone positive your cancer was.
I’m just picking figures out of the air here, but supposing you were told you had a 20% risk of recurrence. And suppose they said Tamoxifen would reduce your risk by 20%. That means taking Tamoxifen would reduce your risk by only 4% (20% of 20%) taking your risk down to 16%.
You would then weigh up in your mind whether the side-effects were worth it to you for such a small drop in your risk.
If I were you I would ask for an appointment with your breast care nurse who are usually more approachable than surgeons but are actually very knowledgeable about this kind of thing. They also speak in plainer English.You don’t have to go in spouting out percentages. Just ask her if she can estimate your chances of your cancer coming back and how much of a difference Tamoxifen will make.
I am a benefits adviser and I always tell my clients to stop me if they don’t understand anything. I can’t expect them to have the understanding that I have. That’s my job. Ditto your breast care team. You aren’t medically qualified so no-one expects you to kwow what all the terms mean and how the different drugs work.
If you are not sure what you should even be asking, tell her that. She will help you out.
Best of luck.
Lola x
Tamoxifen Hi Sarah
I am 39 and started taking Tamoxifen in August last year. Like you I was very very reluctant to take them because I had heard horrendous stories about the side effects and I certainly wasn’t ready to go through a menopause at my age.
Although I don’t suffer from hot sweats or flushes, I do get sore down below now and again but cream helps that. I also get a bit weepy at times but I think that’s a combination of the diagnosis and treatment over the past 15 months.
I still take Tamox reluctantly every day but try to think past the side effects and convince myself that they will help to keep the cancer at bay.
Best wishes to you.
Sandra
xx
no obvious side effects Hi Sarah, I have been taking Tamoxifen for over 4 yrs now and will be taking Arimidex in the summer. I always take mine at bedtime as it can make you feel a bit sick, I have’nt noticed any side effects I knew nothing about it except my GP calling it a wonder drug, so hopefully you will be like me and not notice the side effects. I am also back on the zolodex injections (another 3 yrs had 2 already) now thats a different story as I am suffering many side effects with that, but anything that would/will give me a better survival rate is a plus in my book.
tc cathy x
Tamoxifen Hi Sarah,
I have not visited the forums for quite some time, my pc needed attention.
I had a WLE grade 2, no lymph node involvement, 15 rads then Tamoxifen.
I did not tolerate the Tamoxifen at all, I had terrible joint pains, very heavy painful periods, so after seeing my Onc I decided to stop taking Tamoxifen. She has advised that the only other treatment for me would give me an artificial menopause, I have declined this treatment and am having regular mammograms, I recently had core biopsies to my unaffected breast which thankfully have come back clear.
The only problem I am having now is again heavy painful periods which after investigation has shown a large cyst on my ovary, I am waiting for an appointment to see a gynae and my GP has advised they will opt to remove it.
Everyone is different and tolerate different treatments differently, in my case it was my decision to stop the tamoxifen and i feel 100% better, my mobility and everything is back to normal like I say apart from now this cyst which I do not think is linked to anything.
Wishing you well for the future and your decisions regarding your treatment.
Rowlaine
i didn’t want to take tamoxifen either, i’d just had enough after the treatment and wanted to forget about it all for a while…so waited four months, then had a little panic so decided i should at least try it…i felt hellish at first, headaches, hot sweats, stuffy nose and a definite drop in mood…but i went to talk to the nurses and realised that i had a lot going on and it wasn’t all the tablets…i feel better now and most of the symptoms have gone. i was going to an exercise class at the hospital and that definitely helped my mood, so i need to keep it up!..