Hi everyone. This is my first post. I’ve looked on the site several times over the past couple of months and found some of the discussions useful, but I never thought I would use it myself to ask for help, as I’m the stubborn, independent type. And here I am. I had a lumpectomy and axillary node sampling in September for ILC. Prognosis is very good and I am relieved and thankful for this, but at the moment I feel terrible. I am coming to the end of 3 weeks of rads. I started tamoxifen at the same time as my rads. All has gone to plan apparently and everything is “normal”; but how come “normal” feels so rubbish?
I have been having terrible gut pains, cramping, bloating, and going to the loo a lot, since I started taking the Tam. I wasn’t sure if I had picked up a tummy bug on holiday and was finding it difficult to shrug off ,or if this was an IBS flare up, which is something I’ve had for years. So I just watched what I ate, drank lots of fluid, and took my usual IBS medication to deal with this. However, I am now in week 3 of this and am feeling worse not better. I saw my gp yesterday and she thinks it is either my IBS reacting generally to all the stresses of the treatment, and has suggested I try a different medication, or it could be a reaction to the tamoxifen. I really do feel awful in a way I was not expecting and if this is the tamox, I cannot live with it. I am going to talk to my BCN today too. Has anyone else had this and dealt with it?
Am having hot flushes, sleepless nights and feel very weepy at times too. I really need to know that I am going to start feeling better rather than worse at some point. Friendly advice much needed.
Denis the menace
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Hi denisthemenace I have just finished treatment ( chemo and rads) and ive been on tamoxifen since end of sept and i have been generally ok although i have had the hot flushes and increased wind ( sorry) and some mild indigestion which i take lanzoprazole for .I have found i have some water retention ankles swollen and i have put on a bit weight but my oncologist said it did take a few months for symptoms to settle .Maybe your oncologist is right about a flare up of IBS due to increased stress but maybe you could try another brand of tamoxifen ( theres a few manufacturers and sometimes slightly different ingredient ( iam on wockhart) or even make sure you take them with food not an empty stomach or some people even change their times try taking at night instead and see if anything helps .Finishing treatment is also very emotional and often makes you feel more stressed and emotional at this time my BC nurse said it is a time when a lot of people feel more depressed ( you have had a lot to take in and contend with over last few months and we are kept going on nervous energy but we feel much more vunerable when all this stops and "are on our own as it were"hope it settles soon xx Julie
Sorry your having a rubbishy time, I started Tamoxifen about 3 weeks ago, but have had no SE (so far - touching wood), so maybe it would be an idea to ask to swap your brand of Tamox, as it does seem people react differently to the different brands.
But having a Dx of BC is a stressful time and our bodies show it in different ways, be kind to yourself and rest when you need to, I think we try too hard to be ‘ok’ so that others around us feel better.
I hope someone comes along soon with some good advice for you.
sorry to hear your feeling so terrible right now. I’ve been on tamoxifen for a year now and to be honest I’ve never known what is tamoxifen side effects and what is other treatment side effects or what is stress.
I am presuming from your post that you didn’t have any chemo? Also wondering if you are menopausal?
Gastrointestinal disturbances are listed in the side effects of tamoxifen. From what I understand it can take time for side effects to settle and I think they generally tend to be worse for the first 3 months or so.
I’ve had a lot of problems with severe acid reflux since finishing treatment and had to have a gastroscopy which didn’t show anything. I think it may have been started by the chemo but don’t know how much effect the tamoxifen is having on this. It’s good advice to try taking it at different times. I find it makes my acid reflux worse if I take it at night (and the hot flushes) so I prefer to take mine after lunch.
I would say give this more time to see if things settle. The tamoxifen is such an important part of the treatment. Also allow yourself to get over the physical and psychological trauma of all the treatment. Stubborn and independent has its good points but perhaps you’re being a bit unkind to yourself right now?
Hopefully someone with IBS may be able to comment more.
take care, Elinda x
Thank you for your kind replies and suggestions. Inevitably they made me cry! I know I need to give it more time, but I’m the most impatient of patients.
I dropped into my Cancer Support Centre after rads this morning. They were lovely and v reassuring. Had a big cry and have signed up for some alternative therapies. Don’t know why I didn’t go sooner - actually yes I do, that unhelpful stubborness and independence.
Am now drinking some soothing mint tea and about to tuck into a bar of Cadburys dairy milk.
Hi, I can really sympathise with the gut problems you are having. I’ve been on Tamoxifen since March and up until October had few problems; the occasional ‘warm’ moment and poor sleep but nothing I couldn’t live with. However, since October it has been dreadful, stomach cramps, a sicky headache, seriously bad nausea and diarrohea (sorry TMI), add to that the ‘racing brain’ and I just couldn’t bear it. I just couldn’t function. I saw a locum doctor who thought that I was possibly intolerant to Tamoxifen. It has a cumulative effect apparently which was why I hadn’t suffered earlier. I stopped taking it for a couple of weeks and then tried half a tablet but as soon as I took it I got the sicky headache (that absolutely nothing can shift) and the nausea back. I’ve tried several times now and every time I take the Tam, I get the nausea back and it lasts for days, not hours. So I’m going to have to go back to the doctor because I’m just not prepared to feel so awful.
I’d thought it was a bug at first,then IBS (although I’ve never suffered with that before) but I’m fairly confident now that it is the Tamoxifen because if I don’t take it I feel so much better.
Good luck and I hope it all settles down for you.
Val
Been on Tam for 1 year. During first few months wondered whether i could cope due to gastro intestinal disturbances… so much sudden urgency! Also worried…was it being absorbed? Then miscalculated a few pills on hols… and they gave me generics brand while away… wow so much better. Was i outgrowing initila side effect or what? Dont know but asked for generics brand ever since and been much better.Good luck to you
Chris