I was diagnosed with BC about 7 weeks ago and had a WLE and SNB on 2nd August, thankfully there was no node involvement and I started on Tamoxifen just over 2 weeks ago and have been having some side effects but not really sure what I can put down to the Tamoxifen. I was on the pill, the one I was on had quite a nice SE of stopping my periods and I didnt experience any of the usual hormonal changes during the month. As my BC was both ER+ and PR+ it was suggested that I come off the pill. The problem is I am now struggling with what I would be experiencing coming off the pill and what is down to tamoxifen, just to make matters worse my partner has been having tests and was diagnosed with aggressive Prostate cancer on Thursday. Now everything feels worse - I seem to have lost a sense of what is a natural reaction to what is going on and what is down to tamoxifen - I’m now beginning to over think about the radiotherapy, last week I was really grateful when I was told I wouldn’t need chemo and now radiotherapy seems to be turning into a big thing. We also have started to have problems with appointments, my partner has to have an MRI which came through today and clashed with my planning appointment for radiotherapy - luckily they were there today and when he rang they changed it quite easily. I seem to be crying at almost nothing…
I have been a spectator for the past 7 weeks and have learnt alot about my diagnosis and what to expect at every stage from those of you who have been willing to share your experience - I would like to thank you all for that!
Oh Anne, no wonder ur crying at everything, both your lives have been turned upside down in the past few weeks. To have one of u with a cancer diagnosis is bad enough but both! Ur probably still in shock at it all. Course everything is going to feel worse, Ur head must be totally overloaded with it all.
I came off the pill as well, i was on the one which stops your periods & i must say i haven’t noticed any effects since i came off it which was 22nd June. Your SE’s may be due to the Tamoxifen which im not on yet but im sure someone will come along soon to advise u.
You’ve had a cancer diagnosis, an operation & your partners diagnosis as well as a new medication all in an incredibly short space of time. It might be an idea for u to ring the helpline & have a chat with them about things.
Keep chatting on here as well, im sure you’ll find it a help, take care x
Anne, if you WEREN’T bursting into tears all over the place I’d be wondering what was wrong, given all the horrible crappy cancer rubbish you and your partner have been handed. That really really sucks.
I suggest you give the Helpline a ring on Tuesday (probably not there on bank holiday) if you want to offload onto a human voice rather than a keyboard. But we’re all here for you in the meantime.
I’m sure your medical teams will take your personal circumstances into consideration when dealing with appointments, so please do let them know if you haven’t already.
The hormonal upheavals you’re going through can’t be easy, and frankly I wouldn’t be worrying about what was from the pill and what was from Tamoxifen, just try to find a way to deal with your symptoms. Some people find that if the SEs are particularly horrible, changing brand can help. Also if you get really bad hot flushes, your GP may be able to prescribe something to help deal with them. Low-dose anti-depressants can be really helpful.
I hope you have a good support network between the two of you, with family and friends, and that your radiotherapy doesn’t exhaust you. Not everyone gets tired with it (I don’t think it’s made me any more tired than usual and I’ve been working through rads, more or less) so hopefully that’ll be the case for you. Lots of moisturising with aloe vera helped protect my skin pretty well.
I hope the two of you are able to get away from cancer stuff some of the time. I suspect you’ll find your own moments of black humour that you can share that others who haven’t been poked with the cancer stick would be horrified about.
i cannot really comment on what the side effects are, cos i have not started hormone therapy get. But if its emotional rather than sweats etc i tell you i have definitely got the t-shirt. You think you might have cancer–shock, horror. you wait for appointments and tests with your brain and adrenaline working overtime 24 hours a day. Then there is the appointment when they don’t tell you its all mistake, but that you have cancer, and before your mind and emotions have time to recover the operation is booked and the treatment starts. And for in your case you have the whole thing repeated with your partner. No wonder you are a mess.
You expressed a worry about radiotherapy so I thought i would chip in about that. I think there must be a big difference between those that have had chemo and those that have not before they have the rads. I don’t know how long your course is. I have had 15 and am about to have 5 boosters and I tell you it has been fine. its a big bore having to go to the hospital every day for a month, but my unit is a really quick in and out turnaround so there is not hanging around. I think the secret is not to try and squeeze it in to normal life but to realistically say that it will take half a day and so what can you stop doing. that way you will not be stressed trying to juggle it all, and they stress is what contributes to tiredness.
I cannot believe the double whammy that you and your partner are facing. Don’t know weather its best to get it both together or one after the other. whichever way its …(ooops about to swear but have had too many warnings off the moderators)
It is really interesting to know that people are watching this site. And its nice to know that they might be getting support without deciding to join in.
I hope that now you have joined the club you continue to let us know how you are both getting on
Thank you everyone who replied. I felt much better just doing something and getting some of that out of my head.
I think I have been on a roller coaster of emotions since finding the lump and we had both put Tonys Prostate problems to the back of our minds just to be able to cope with with what was going on with me. Im glad I have had time to get over my op and although still a bit sore it isnt really affecting me doing anything now. Although Im still not meant to be driving for another week - Ive been good so far and followed the advice.
I have been having hot sweats which I am sort of getting used to during the day, but they do wake me up at night - although not to many at the moment. Ive been really tired although I dont know how much I can still put down to the op and just being emotionally exhausted. Also been feeling premenstrual for about a week and nothing has happened - although ive read on another thread that periods can become erratic. Also I got an infection and was on anti biotics and get a bad dose of thrush which doesnt usually affect me and this seems to have gone on for ages. Actually all in all writing them down they dont seem too bad.
I did get a bit irritated when my oncologist said that after Tamoxifen I could still go through the change - I should be 50 when I finish and didnt really fancy the idea of hot sweats etc all over again. (But I could be lucky and go through it naturally before then). He said that it is usually 15 radiotherapy sessions, I took it that he meant I would be having 15, although I have done my usual and didnt get him to clarify so have been thinking is that what he meant. I am now coming to the conclusion that maybe I should ring the nurse on Tuesday and try to get some of my questions answered, rather than worry or wonder. I think the being sensible with what I do during the radiotherapy is sounding like good advice and Im going to have to plan and be realistic - that way Im sure I will feel much better about what is going on.
Thanks for making me smile and I’m not feeling so alone
hi my experience, If you think its a side effect, it probably is lol,
no seriously ask, ask and ask again, if in doubt or you are wondering about something, ask them that is what they are there for.
your idea about ringing the nurse is a good one. I bet if you got pen and paper out now and made a list of questions it would make you feel better. You sound like the sort of person that feels better when they have taken action to sort things out. And you can add things as you think of them.
I find posting on here helps sort my mind out. sometimes i write a question or a point and feel so much better as i read it through that I find i no longer need to post it and hit delete.
Hello Anne
so sorry to read about what a tough time you’re having.
I’m similar to you in that I had a WLE and SNB and am now on Letrozole and mid-way through radiotherapy sessions. I had already had the menopause, but the letrozole has kicked on hot flashes again. Bit of a pain, but I try to say to myself each time it happens, that its better than having breast cancer.
The radiotherapy has been relatively easy so far… I’m a long way from my hospital so have to get up early to travel to a first thing in the morning appointment. I work in theatre/music, so early mornings are not really my thing, but I asked for it in case its was hot and I thought it would be a good cool time to travel (so where’s the sun!). I was tired by the end of last week, but gave myself a long lie-in yesterday and had a very lazy day and feel back on form today. I’ve also been having early nights whenever I can. Concentrating on the paid work, (I’m freelance, so if I don’t work I don’t earn) and the housework can go hang for a while.
I do find I’m more emotional - but I think that’s because of all the emotions involved, the waiting, the not knowing, the relief, and sometimes the guilt that mine has been an easier journey than many. My oncolgist said I shouldn’t expect to be back on top form until 12 months after diagnosis, and that was because of the whammy the body AND the mind has taken. And you;ve got a double whammy with your husband’s illness.
There is a gang men having radiotherapy for prostate cancer who coincide with my rads - and they’re a very merry bunch. It will probably help your husband when he’s more into treatment and meeting lots of others.
be kind to yourself and try to take each day one at a time.
TAMOXIFEN wow its drained me of everything infact i have give up feeling normal tiredness is horrible its got that bad i am of to doc and going to ask to come of them i cant do nothing i am a differant persoi i have to pre plan anything i do i dont sleep as we all know hot flushes omg i drink a litres of water sex whats that i have only been married 6 years and hes had nothing for 2 and half years lol but the worse thing i can honestly say is the tiredness oncologist puts it down to treatment so after 2 yrs i have come to the end of the road and have decided to see doc and stop tamoxifen yes i no its goin to help stop cancer coming back but do i want to live like this no rather take my chances have to see the doc today as i have got a bite on effected side on collar bone and its nasty need anti biotics and yes i have the dreaded lyphodema lol
the tiredness has even put me off reconstruction if i feel this bad now god help me after the 10hr op oh i just dont no