Breast Cancer Now Forum

My sympathies - this is so miserable and sore. However, as regards the early post-op exercises, I would proceed gently and be a bit cautious about overdoing it. Things are still healing at an early stage. The helpline is very useful as you can really talk things over, and decide whether you need to go back to the breast care team or your doctor. Best wishes K x ... View more

Hello Yes, spasms around and under my mx scar/ribs. I put them down to rads. Leg cramps also a problem. Feel at least 90, but was told by oncologist at last visit that there "is no choice, and have to continue". Lovely. I don't have joint pain, but generally ache all over with a flu-like feeling when over tired. I have put a lot of weight on round my middle, and I have been trying to walk every day. Cholesterol also up, so am expecting that treatment to start as well. This weather is not helping my resolution to keep walking - soo cold. Back to the spasms - one for the oncologist I think, as this is presumably down to the nature of the drug (or alternatively nothing at all to do with it!!) K x ... View more

Oh dear, what an emotional time, but wise words from chocciemuffin. A man's mind is certainly a mystery to me, as my other half forgot that I was going to the hospital for the test results, completely and utterly forgot everything about it. How could anyone forget! His attitude was that if I'd have reminded him, he would have remembered. We've been married nearly 40 years. As a rule, he will not worry about something in advance, only after it's happened. He will put worries to the back of his mind, until he has to address them. I bring worries to the front of my mind so that I've worked things out in advance - if that makes sense. We are just different people, and he doesn't cross his bridges until he comes to them. Perhaps your other half will provide just as good care of you as you did for him, if and when this situation does/doesn't turn out to need it. My husband has been mostly very helpful, despite his dodgy memory at the beginning. But to add a little balance, I had a really terrible reaction from my sister to the news so people do behave oddly and in ways you don't expect. And we are certainly not our normal selves!! I hope it all turns out ok for you, and I think you might be better to ask your partner to go with you, if his job permits. He is probably quite anxious that the new job goes OK, which is understandable with a family. Good luck K x ... View more

Hello I second the advice from rosebud above. I was in a lot of pain at this stage. If your mum could ring the helpline, and explain what she's experiencing, I think she would feel much better. Sometimes it needs several strategies - for me this included better pain relief (consultant), physiotherapy (big nag to get GP to refer me), severals trip to a Haven centre, and some time, and it did come under control. But would it have got better without all this - I don't know, but I couldn't wait 2 years to find out! I'm sure a call to the helpline would be a very good start to getting things right for your mum. Good luck. K x ... View more

Hi. I don't think I would like to wait so long to see if it settles down, and in your situation I think I would be off to the GP and get a check up pronto. At our practice, you can get fobbed off with either very junior Drs or practice nurses - so I mean a more senior person who can give you a proper check-up of this bad arm. I definitely wouldn't just stop the Arimidex, but this needs a medical check up to see what is causing it. K x ... View more

Hi I ended up with a Trulife Harmony Silk Xtend (have a look at the Nicola Jane website) as provided by the hospital. That was the only brand they stocked. It comes around under my arm where I'm fuller and it matches the other side (i.e. have rolls of fat!). I hope I'm not too deluded to think that actually you can't tell even in a tee shirt. But honestly it took weeks if not months to want to wear the darn thing. Could not tolerate any form of bra rubbing on the scar. Then of course it falls foward a bit, so one of the bcn's gave the same advice which is to wear it in the cup, not the pocket. Worth a go. I think it's a combo of the right bra and the right shape insert, so I suspect that until you find/can cope with the right bra, the situation will be the lovely lop-sided look. I appreciated being able to see a fitter from Nicola Jane in London. I don't live there, it was a special visit. But she thought the fit of prosthesis/bra done locally was fine, and just recommended the same. TBH, it comes off the minute I'm home from work. Summer is a different problem - need something cooler! K x ... View more

Hello Marianne Oh dear, sorry you're worried. I'm not saying this to bother you, but just to encourage you to ask the hospital staff for advice. This is just a suggestion - but have you had a check-up from the surgical team or breast care nurses recently about this, or have you not seen them for a while? I'm not quite sure why some people seem to have nice smooth scar lines, but like you, mine was lumpy, bumpy and sore even before starting radiotherapy. Also I'd had seroma due to drain problems. I was bothered about it when I went to see the oncologists before radiotherapy, but their main concern was getting the radiotherapy started, not with my worries about the wound. Then when I asked the radiology staff, I was told it was normal. But how are we supposed to know what's normal!! Long story short - it took a long time to heal, and I wish I'd asked more questions earlier. I did have to be referred back to the surgeon. So all I can suggest is - if you have questions - ask the breast care nurses and get seen! At least then, you are getting proper advice from the experts. Very good luck with it all - all the best K x ... View more

Hi I had a couple of disastrous purchases in the early days - probably too much too soon. I was fitted for a Royce Jasmine bra by the local John Lewis fitter when I was feeling just awful, and have got along fine with it. Shortly after I went to the Nicola Jane shop in London ( bit of an expedition to get a swimsuit), and the fitter there sorted me out with exactly the same, and said the JL fitter had got it just about right. It's cut low enough at the side to mostly miss the painful scar. I don't think I could even imagine underwiring!! K x ... View more

Hello I had the same problem, lots of pain/numbness etc after mx and SNB because of nerve damage. It did eventually settle down, but this did take some months (not weeks) and I had to ask several times for help and advice from the hospital - this involved pain medication, physiotherapy and some other help. I can wear a bra and prosthesis for work, but don't bother with it at home, as it is just too irritating under my arm. I do hope you find it settles down, but in my experience it was a very gradual process over quite a long period. I was very anxious to get fitted for a bra, and have a couple of very expensive mastectomy bras which were painful disasters. Eventually I was sorted out by a nice fitter at John Lewis and have stuck to the same simple style since. I think bra comfort is a very individual thing. I also think the very gentle exercises (l think the lymphoedema exercises from one of the websites ?? Haven) helped. I never thought it would improve, and it was driving me crazy, but I can say that eventually it did. K x ... View more

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Agreed, Sounds very like the joys of hormone treatment or similar. Please encourage your friend to speak to her doctor/medical team. K x ... View more

Hi There's good and bad about forums, and the nice thing for me is the practical companionship and suggestions people have been kind enough to give. But the downside is that sometimes we post our worries/problems and not our good days, and good news. There's a lot of good in your post, and another good thing is you're seeing the oncologist tomorrow, and if you jot down a list of your questions, you will get answers to all these worries - that's normal and they really don't mind you asking. Anything you miss, well you can always ask the breast care nurses or the helpline (which is excellent). They can give you more info about the Arimidex and you may find that these early symptoms wear off pretty soon. Perhaps a little extra water since you have a headache and a feeling a bit thirsty? This is just a thought (and if I've managed to insult a teetotaller please forgive me!!) - and other people may not have this problem - but I really can't cope with alcohol since being on Arimidex. I am a very light social drinker at best, but wine can make me feel yuck the following day, I've more or less given up. I suspect we all have slightly different experiences with it, and eventually work out what works and what doesn't. But as I said, you haven't got long to wait for your appt. All the best. K x ... View more

Just a thought- as its been quite a few months since they recommended it for you, perhaps a quick check up with your doctor first?? Then you'll know that the doctors advice is still right for you now, as opposed to a few months back. And you can show the doc exactly where the discomfort is for you now. All the best K x ... View more

Hi, I wrote a long answer but it disappeared into the ether, so I thought I'd just do a short one for now. I was wondering why you hadn't given the gel a try? If it doesn't help, you can always ask for some more advice, rather than put up with it. The rest of this post may not apply to you at all and is not meant to be depressing, just my ramblings on the subject of a painful experience. I had some very helpful advice on this forum at the time - just when I was starting to get really down about it. It is hard to grumble on here particularly when so many others have far worse problems, but you have to be able to grumble somewhere! I had much the same issues after a mastectomy, and a LOT of wound swelling after radiotherapy. Also had Gabapentin, Ibiprofen Gel and physio prescribed and used them for a while, before stopping. This was only after making a fuss about the terrible pain I was in after radiotherapy. I really believe I was started on the radiotherapy way too soon after the mastectomy, when the wound was not healed enough, and because I was fobbed off with seeing the inexperienced oncology registrar, not the consultant. Also because the problem was deep by my chest wall, I think the radiation has inflamed my ribs and pectoral muscle. At least that's what it feels like to me. I also had a lot of nerve pain down my arm which has improved a lot over the months. AS I said, I did have to make a fuss in the end, and ended up seeing more senior medics and got the treatment outlined above. Also had some help from Haven to settle my worries. The pain and swelling did eventually settle down, but haven't gone away by any means 2 plus years later. Still irritating stiffness and pain under the scar line, discomfort wearing a bra, and a rather swollen arm. I really do think I'm stuck with it now, and have concentrated on trying to "put it to the back of my mind", and get back to work. I shouldn't be so lazy about my stretching exercises, and wish I was a more confident swimmer - which someone else suggested. Sorry to ramble - but would encourage you to approach the breast care team again if you are in discomfort. At least they should tell you why!! All the best K x ... View more

Hi, Yes - its just 2 months at a time. As the active ingredient (anastrozole) should be the same - why might I feel different - or is it just random? I'm interested whether other people think it makes a difference. If there some thing else different about the formulation?? I've only had 2 changes in 2.5 years, so I wouldn't like to be switching all the time. K x ... View more

Hi Just logging in after quite a while to make a post about Arimidex, and thought I'd post an update on the retirement situation. I did eventually decide to retire and have now been at home for a couple of months. Lovely retirement party and summer holiday, and have not missed work at all, even after 40 years. Not everything has worked out. Thought I'd have lots more energy but am just as tired and achy (Arimidex) as before retiring - in fact some days worse, and my dodgy mx arm is more swollen than before due to more gardening. This has been a big disappointment. General chores are taking for ever, and tbh the house is very untidy. To think I used to have a full time job, kids etc etc. and a tidy house. Now there's no job, no kids fulltime at home, and we're in a pickle most days. Motivation has slipped! (Sorry if this sounds a bit sad - but I really hate domestic muddle!). But I'm also really very very tired at times. I've enjoyed the work pressure coming off, but I'll have to give myself a smart kick in the rear about what to do next, as the days are just drifting by. K x ... View more

Hi Well up again at 6am. Pouring down with rain, so what to do!! Had a long chat with husband yesterday, who thinks it's all nuts to keep working and would agree with all of you about finding something else to do. Unfortunately we are a bit at cross purposes because he does tend to interpret things in terms of what HE would like to do after I retire. I'm struggling to convey the concept that if I am totally tired out by a mainly sedentary job which I've done for years, then the long road trips HE fancies might just be too much. He can't see it, and keeps rabbiting on about stress in my job, which I find very annoying. This stress he keeps on about, as far as I can see, is just normal mental stimulation of the ups and downs of a quite specialist job. I do worry that we are going to get on each others nerves a bit. But I suppose that's gonna happen sometime, can't work for ever. But it's replacing a busy job with loads of people contact with a much lonelier and quieter place called home, that's the puzzle to be sorted out about the next stage in life. Anyway, its decision time this week at work - this job is not hanging around waiting for me to pick and choose!! K x ... View more

Claire I hope you've had a lovely party and not too many tears. Thank you for taking the time to pen the thoughts on a big day. Good luck for your retirement and let's hope there some sunny days soon, as it's not exactly warm here today. K x ... View more

Thank you for your thoughts. It's proving a hard decision, much more than I'd expected, as just at the moment it mostly feels like a loss, not a gain. And yes, that does include my pay, and I do have dependents, as OH is retired. I think all the very depressing news about people losing their jobs just makes me feel worse. As far as i know, nobody will get my job once I go, and so I don't even have the release of getting ready to hand it over to someone younger, it will pretty much be a case of dumping it all in a bin, and shutting the door. I'm not as quick as I used to be, so perhaps I should stop kidding myself. We all like to think we're indispensible don't we!! Well one thing I could do when retired is get a bit more exercise, lose all the weight,and stop feeling so bl..dy tired. And having been up most of the night worrying about this, perhaps its bedtime! K x ... View more