I was dx 5 and a half years ago. Had three and a half years of tamoxifen, 18 months of which was with zoladex. Was fine when on the combination though some period probs with just tamoxifen. Had hysterectomy 18 months ago and switched to aromasin (exemestane). Then dx with osteopororsis and given bisphosphanates. Really struggled with side effects of those for 12 months and just agreed to go back to tamoxifen and ditch the bisphosphanates and aromasin. Struggling at the mo with headaches. Has anyone been there?
I’ve been offered this option. My consultant said that if I couldn’t cope with the pain and stiffness I have on aromasin I could go back to 'Tamoxifen but aromasin gave the better protection. I was found to be osteopenic last year and am awaiting results of another bone scan. If it has got worse I will be offered bisphosphanates I think.
I have been on Arimidex for 2 years, and it does get better. I too was found to be osteopenic and am now on bi-phosphates which are more of a nuisance to take than anything. The first 12 months or so I definitely found the worse, but now, (when I’m not too tired) I can walk for up to 4 hours, have a bit of a rest then be up for more. I am glad that I perservered with the Arimidex.
I was only on Arimidex for 3 months, put myself back on Tamoxifen, had a supply in the house anyway, and then at appointment at Breast Clinic, which I’d asked for, I told my consultant what I’d done, and asked him what he felt, and he said as it hadn’t been in my nodes, and it was adjuvant therapy anyway, he was fine with me going back on Tamoxifen. He said the same as what I’d said myself, that basically if it was making me feel so ill and uncomfortable then what was the point. I’d been on Tamoxifen with absolutely no problems whatsoever, 3 months on Arimidex, I was like an old woman, every pain in every joint, now I am back to my old self, and I feel great. I get the occasional ache and pain, but hell I’m 51, not 31. On Arimidex I felt I had aged overnight. I’m like everyone, want to try and take every precaution I can, so that this bloody disease doesn’t come back, but need to be able to function properly, to go to work, to enjoy my life.
I agree that quality of life is very important and I would also agree with the sentiments expressed here that we are the only ones who can make that judgement.
I am 43 years old, diax at 38 so forced menopause through zoladex and then a hysterectomy. I guess that may make a difference. I found exemestane okay but the side effects from the bisphosphanates (a necessary addition because of the osteoporosis) were wearing - like Julie I felt I had aged.The only way I can come off them is to come off exemestane.
My onc wasn’t too pleased with me switching back but I really felt it was the right thing. Though 7 days into this migraine I am starting to wonder what I have done to myself. I’ve seen my GP and he assures me it’s “just” a headache.
Good luck to everyone - we have to do what’s right for us.
I like you had a hysterectomy last summer with removal of ovaries, and I have found that has made me feel a lot different and “older” in myself. Don’t know what you’ve found after yours. Some people say they feel fab after their hysterectomies and like a new woman. I most definitely don’t. Probably the ovaries going I think, but it’s definitely aged me. I do actually feel that the hysterectomy aged me more, than my original BC. I know that probably sounds mad, but I get far more tired, my skin looks drier, I can see myself aging quicker, and I don’t like it one bit, ha ha. I even saw a hair coming out of my chin the other day Nooooooooooooooooooooooooooo. Scary !!!
You make a really good point, I think for me it’s hard to separate the hyst, the exemestane and the bisphosphanates as they all happened around the same time. I think that’s why the oncologist (reluctantly) agreed this change for me - in her mind I am sure that she thinks I will find that I feel just the same and might as well go back on what she described as her “medication of choice”. I will just have to wait and see. At least the headache is starting to subside. Yes to chin hairs and a moustache!! Awful isn’t it? Between that and the middle age spread, talk about attractive … Never mind we know we’re beautiful on the inside!!
Did you have an abdominal hysterectomy and if so, have you been left with a muffin belly over the scar line. I have, and I hate it. I’m having liposuction from one part of my body to fill in some creasing areas on my reconstruction of breasts later in the year, and at the same time my plastic surgeon is going to do a revision of my hysterectomy scar. It’s won’t be a tummy tuck, but hopefully will tighten up the loose flesh that the hysterectomy has caused. He says it’s classed as a lower tummy tuck. I thought “that will do me” !!! ha ha. I think my turning 50 last year, my BC 3 years ago and the hysterectomy last year, everything has all come together to conspire against me. Still, I suppose that’s life !!!
yes I had an abdominal hyst - muffin belly? Yes if the muffin is gigantic and very fluffy!! Think it would take more than a tummy tuck. Good luck with your surgery, it sounds great - I hope you have a beach holiday planned to show off the results?
Thanks for the good luck, but whether I have the guts to go through with it is another matter. My scar will apparently be a lot longer than it is at the moment, which is worrying me a little, although it should flatten the hangy over bit!! Beach holiday!! I wish. Got a few days in the Lake District this summer in the poring rain, so I don’t hold out any great hopes for the coming months ha. ha.