Had a lumpectomy early December; now looking at radiotherapy and Tamoxifen. Will be seeing oncologist next week. What questions should I be asking? Am horrified by the side effects listed for Tamoxifen, so much so am tempted to say I won’t take it. Had to stop HRT on diagnosis so hot flushes already a severe problem. What are other options? Have heard about aromalase inhibitors - anyone tried those? Any views? My very best friend who supported me though this now dying of pancreatic cancer, diagnosed 4 weeks ago, so feeling very low and depressed about that too. It never rains but it pours, it would seem. To be honest, it feels like a tsunami.
Please don’t panic unnecessarily yet. The side effects listed are what you MIGHT experience and there are postings on this forum written by ladies who are struggling. However, there are many more who won’t post because they’re fine. I’m on Tamoxifen as is my aunt. I’m also in touch with some ladies I met on my chemo ward and none of us have had any adverse side effects. I had bad hot flushes after chemo, but they’ve stopped now. Of course I can’t promise that you’ll be side-effect free but it is a wonder drug and is hugely effective and saves thousands of lives so it’s definitely worth a bash and hopefully you’ll be pleasantly surprised.
So sorry about your friend. I bet they would advise you to at least try the drug.
So sorry that you’ve had to join us here, but you’ll find a lot of support and information.
First off DON’T PANIC! Don’t prejudge any treatment until you try it. Not everyone gets every side effect (SE) and if you read all the potential SEs on the side of a pack of paracetamol, you’d never take one again.
Often it’s the people who are having problems who, quite understandably, use the forums most frequently and mention them. It’s the boring folk like me who you don’t hear from so often.
I’ve been on Tamoxifen since the middle of August and haven’t had a single hot flush. I was pre-meno, but haven’t had a period since part way through chemo - so that may have pushed me through the menopause. I’m a bit more achey than before, but that could easily be the lingering effects of the chemo I had.
If you try it and you really can’t tolerate Tamoxifen, there are alternatives. Personally, the SEs of those sound more problematic to me (joint pain and bone thinning potentially). Remember that they prescribe the treatment that they think is best for you and that will decrease your chances of getting a recurrance - however, sometimes the margin of benefit is small.
Discuss it all with your onc and I’m sure they’ll put your mind at rest. Once you have a treatment plan it all becomes less scary.
Hello, I have been on tamoxifen since oct, I’m pre-meno, I haven’t had any side effects. This is a worrying time for you, please do try them and if you struggle with them then speak to your onc. Good luck x
I spent the day in hospital today with 3 other ladies. All 4 of us had experienced different side effects but were receiving similar treatment. What I’ve learnt so far through my journey is that every individual reacts differently to chemo. There are common side effects but then “you may also experience list” can be endless and not worth spending time worrying over. All of us were discharged this afternoon with smiles on our faces! Good luck x
Just remember that chemo is different things to different people, but most of us who have undergone it will agree that it is ‘doable’. Just let your oncologist know if you really can not put up with any of your treatment as they can always find a way round any problem, but you must let them know and don’t suffer in silence. As Sandytoes says the side effects are what you MIGHT experience, but then again you MIGHT NOT.
Take a look at what is already in your bathroom cabinet and the chances are even a headache tablet has side effects listed that didn’t stop you from taking them and that you never experienced either.
I think that the fear of chemo is worse than the experience so try and take it in your stride and mark each chemo session off as you have them. I had to have 6 sessions so after 2 I was 1/3 through, after 3 I was halfway, after 4 I was 2/3 through and then after 5 it was just the last one. This bite-sized approach worked for me.
I’ve been on tam since august and the only side effect is the odd hot flush. I’ve not had any mood changes or problems with dryness in the downstairs dept. I’ve managed to hang onto my libido throughout treatment and am happy to report that it’s still alive and well.
I had 6 weeks of rads and had a major suntan in that area - that’s all, and that was after having an immediate recon which was more likely to cause trouble.
Take heart, you probably won’t have problems but if you do tackle them when they arise. X
Good morning,
This is such a frightening time but remember your team will be offering you the treatment they see as being of most benefit to you. Tamoxifen has been used for over thirty years to the great advantage of many ladies and men that have been prescribed it. All drugs have side effects and as has been said by DJ007 if you believed you would get them you would never take a single tablet. The large majority of people who take Tamoxifen have no problems with it or the problems do not outweigh the benificial effects. You can always stop it if you cannot tolerate it.
I so hope all goes well for you
Thank you all for your very positive and encouraging replies - much appreciated, believe me! Less panicky today - yesterday was a really really bad day because my lovely friend is now going into a hospice as the cancer has spread. I see the oncology team next week so will report back on what they say.