Breast Cancer Now Forum

@Hope213 @My situation is different from yours but I started on Letrozole and had hot flushes and the arthritis in my joints became worse. I was then switched to Examestane but the side effects didn’t change I’m afraid. For the last 10 months I have been on Tamoxifen.  I guess it’s worth a try as everyone is different and you may find it suits you better. Good luck, fingers crossed.   xx ... View more

@mazz1066 I also have lymphoedema and I went to a bra shop owned by someone (I discovered) who had been through breast cancer and she suggested a firm sports bra. The one I bought was made by Anita - a German firm - and it is very comfortable although rather expensive! Gradually my breast is getting back to normal. I live in Norfolk and I imagine it’s not very near you! I hope there is something similar near you! Caryl ... View more

@GatehouseJ I have had a similar experience I’m afraid. My surgery was in August last year and RT in October.  I went to see the consultant in March because I was worried about the hardness of my breast and he said it does sometimes happen and can take many mo the to get back to normal.  Now, over 10 months since RT my breast is back to normal except around the scar, which like yours, is almost under my arm.  I had a check up recently and was told it is quite normal and not to worry.   hang on in there! ... View more

@Alvilajo it certainly  isn’t fair. Sadly I think GPS are the worst. At my surgery there is a pharmacist and a physio now and I ask to speak to one of them as a starter (if appropriate obviously!). They are much more helpful. Pharmacists are really knowledgeable so it may be worth asking to speak to one - at your local pharmacy if the GP doesn’t have one. Good luck xx   ... View more

@Alvilajo I’m so sorry you had this experience which is unacceptable behaviour on the part of the doctor. I had similar unsympathetic treatment from a doctor last week at my first check up. I’d never met him before and he refused to answer any questions. I felt I had wasted my time but phoned the BC nurses when I got home. All my questions were answered and I was assured I could have an appointment with the consultant I know if the side effects from tamoxifen persist.  if you have nurses I would urge you to speak to them as they are so knowledgeable and understanding. I think it’s so easy for our brains to go into overdrive. And it’s so reassuring to talk to someone who has empathy and experience. ... View more

Hi @Lochlilly  Last year I was put on letrozole in May. It didn’t affect my brain but it did make my joint pain (arthritis) much worse, and I was moved onto Examestane about three months later. I’m afraid this had a similar affect and so in December they put me on Tamoxifen.  This was fine for a while but I then had hot flushes which woke me up several times a night.  The BCN suggested I stop taking it and talk to the consultant at my review next week. I guess they all react differently with different people and it’s a case of trying them out, but it isn’t a pleasant experience that’s for sure! I hope you find something you can cope with.  Don’t be afraid to speak up if you get side effects!  Good luck!   ... View more

@tappin @LMW  This will be my first mammogram. My cancer was diagnosed in April 2021 and I had surgery in May and July (didn’t get the margins first time) and RT in October. I was oestrogen + ... View more

@tappin I will be interested to hear how you get on. I have been on Letrozole Examestane and Tamoxifen in the last year and all have side effects I can’t cope with. I have arthritis anyway and the extra joint pain is dreadful. I am 71. I am seeing my consultant on 3rd August and wondering what he will suggest next!  I hope he may suggest looking at the hormone levels but I want to talk about the issue of quality of life v. Likelihood of the cancer returning for someone in their 70s.  Caryl ... View more

Thanks for your replies @kazaroo @and @LMW .  I have been off Tamoxifen for 6 weeks now and the hot flushes have finally stopped. I am seeing my consultant on 3rd August and will discuss what happens next. I have decided quality of life at my age is key and having had a knee replacement 3 weeks ago with another one needed, I don’t think I can tolerate any more joint pain! I’ll let you know what happens and really appreciate your thoughts.  Caryl ... View more

I think I will be in the same situation as you. My surgery was a year ago and I had RT in October. I was on Letrozole from May 2021, changed to Examestane in September and then Tamoxifen in January 2022. I had hot flushes with all of them and joint pain with the first two as well. I have just had a knee replacement and the wonderful BC nurses to stop taking the Tamoxifen while I recover and until I see the BC consultant on 3rd August. I am going to have a discussion about the percentages. My oncocyte scores showed only a small likelihood of the cancer returning and I guess I have to weigh up the quality of my life at my age (71) with the risk. It isn’t easy and I am constantly worried about it like so many people on here.  Caryl   ... View more

Hi Jenna In the last year I have been on three different hormone blockers, all with horrid side effects and like you I am wondering whether it is really necessary. I’m 71 and the thought of this for 10 years is awful. I will be interested in what others think! best wishes    caryl   ... View more

Hi Delly and everyone    sorry I’ve been quiet - having problems getting my knee pain under control but good news!  Having waited for surgery since February 2020 I have at long last got a date. June 5th. Hooray. Just hope it isn’t cancelled. Pain is better now although I’m not sleeping very well so permanently knackered.  hope you are all well and doing OK xxx ... View more

Sorry Everyone, I'm so busy at the moment, not that I am doing much but I'm organising a sustainable fashion show with some friends at the Cathedral.  You'd be amazed at how difficult it is to get people to respond to an email, or perhaps you wouldn't!!  It's their chance to display their clothes to the good people of Norwich and make a few sales but they are too busy to answer our emails!! Other than that life goes along at a gentle pace.   We have had fab weather recently and I have been sitting in my garden, sometimes wearing a coat.  And sheep have arrived outside my window, baby lambs, all very rural! Hope you are all keeping well, and promise I will do my best to respond to your questions!   love  Caryl   ... View more

I think I have just posted a blank reply! How daft! my mole has moved on, probably only temporarily but he’s giving the grass a chance to grow at the moment.  i am in Norfolk near Norwich, so rather a long way from all of you in the north. Lovely countryside around here and only about 20 miles from the sea.  i didn’t realise Macclesfield was a centre for silk - this area was all about worsted and dying. Norwich shawls are amazing.  Hope you are all doing well! Caryl xx  ... View more

Hi Delly really sorry your keg is still bad. Both mine are bad do I can empathise. Waiting for  new knees.  just got home to find a mole has got lost under my garden. Mole hills all over the place little b*ggers. Currently sitting in the sun with my back to the mess! I definitely want to see @CumbrianLady wall hangings. I’m into textile type craft but a bit lazy. I do like looking at what other people do!   love to you all xx   ... View more

Hi @delly The oedema was there after both lots of surgery but went down and reappeared two months after RT.  Consultant says it is partly RT and partly the fact that the incision is nearly under my armpit.  I have another appointment in a couple of months but he says it will go down, and I think it is ... slowly. At least it isn't uncomfortable or painful at all.  Good news on the bra front as I have one on order which I think will help.  My problem is the opposite of yours!!!  I thought after surgery I would be lopsided but not in the way it's turned out.  I really think if I go through this again I am going to go for the double mastectomy. I really empathise about the lack of family.  My brother-in-law lives next door but we don't have a great deal in common, although my nephew, in his 30s who has learning difficulties does huge amounts to help me.  Other than them and some cousins scattered around the country I am entirely on my own apart from an ancient aunt who I am fond of but even at 92 has all her marbles and issues orders periodically! Good thing for cats I say!  The monsters and all the stuff I am involved with at Norwich Cathedral keep me going! Love Caryl x ... View more

Hi @delly and @Guest user its exactly a year since I discovered my tumour and I had surgery in early June. unfortunately I had to have another lot of surgery as he didn’t get all the margins, and then I had RT in October.  It actually didn’t worry me to be on my own during it all - I guess I am so used to it and I am lucky to have some good friends around, I too want to see the wall hangings please! Love to you all xx ... View more

Good idea. I’m not sure how I found you now. I am alone and faced cancer alone last year. Now facing the bra fittings alone but frankly no one would want me and I don’t think I could live with anyone again!  Chit chat about boobies is my limit these days xx.   ... View more

That really made me laugh! yep topless it will be! Luckily I don’t really have neighbours so no one to be shocked! The BC surgeon said it will go down and he will assess again when I see him in a couple of months, so will keep your suggestion in mind/ thank you!   xx ... View more