Breast Cancer Now Forum

Thanks for the replies, Carolyn & Sue.   Yep, mine's Accord too, though I'm sure I've had others. I also take Efalex Brain Formula capsules (omega-3 & -6 & evening primrose). I haven't had any problems with hair thinning: I have incredibly thick hair which thinned durting my natural menopause, then thickened again. I haven't noticed it thinning since starting the letrozole. ... View more

Just re-read your post & noticed you mentioned steroids. Back when I was first diagnosed, I took...   I was just googling to try to find the name of the one I took, and I found the Crohn's & Colitis UK website, which might help you.   Anyway, I took steroids at a decreasing dose for 6 weeks, when I was first diagnosed. I'd read about side effects & was scared of them, but I didn't get anything bad. The only thing I noticed was that I'm usually in touch with my feelings, and while on the steroids I was a bit more 'on the surface' only, IYKWIM!   I think it may have been prednisolone. ... View more

Oh, bad luck - hugs to you!   I'm not in exactly the same position, but I have Crohn's disease which is similar. And I'm on Letrozole, having had a lumpectomy & SNB in January this year, followed by radiotherapy.   I've recently had my first real flare-up of the Crohn's since it was diagnosed about 10 years ago. I take Mezavant (Mesalazine), and that normally controls it. Luckily I have access to a specialist gastro nurse so I could get advice and prescriptions straight away. She doubled the dose of the Mezavant and added in the delights of suppositories and a foam enema!!! Oh, and Milk of Magnesia...   After a week of that, I'd had enough & things were getting better, so she let me off any more and I went back to the usual dose of Mezavant. I was debilitated for a few days but gradually got my energy back.   It might be worth checking what foods are good & bad when a flare-up occurs. Cutting out spicy foods, eating white bread instead of brown, etc, might help?   I don't know how much help that will be, but I sympathise because I know how rotten it can be & how it affects everyday life. All the best. ... View more

Thank you so much for everything you wrote, and for the quick reply. It's spot on: I read it late at night before the check-up the next day, and it helped tremendously. I'm so grateful to you.   Everything was fine in the end. There's some lymphodoema in the breast but I already had Bio-Oil, and I was told to massage with that. Otherwise, no problems. And I've now fixed up an assessment for the free counselling, so things are looking brighter! ... View more

Thank you so much, Claire2s. Why do you avoid food shopping? Is it carrying heavy bags?   Good to hear you're doing so well. ... View more

Just to add...   There were no pain or mobility issues, and I haven't had a seroma or any numbness under the arm. There was a very slight, almost pins & needles feeling in the forearm & back of hand.. ... View more

I had WLE & SNB on 4 Jan 2017. I'm on the verge of going for breast radiotherapy only, plus hormone therapy, in an attempt to avoid any lymphodoema and arm problems. But I just read that breast rads can give you arm lymphodoema; and the more I researched on lymphodoema, the more I wonder if I've already started it.   I had an episode of swelling in the surgery-side arm 22-24 days after surgery. The arm just felt different, and I couldn't tell if it was really numb so at my husband's suggestion I shut my eyes and he dabbed the back of both hands with different numbers of fingers: I got the number right every time. But later on I noticed swelling in my wrist and forearm (can't remember about the back of my hand). I was worried but put it down to overuse. The next day it was gone.There wasn't any pain with the swelling, just a feeling of the arm being puffier.   26 days post op, the arm & back of the hand were swollen again, and I talked to a nurse about it by phone (getting a breast care nurse had been a complete lash-up, really, until then). She said with only one lymph node removed it would be very rare for it to be lymphodoema, and was more likely to be the result of nerves healing after the operation.   Any opinions? I was already raising lymphodoema as something I was trying to avoid, so I wasn't going to treat the axilla even though the sentinel node was positive. I was willing to trade off the uncertainty about anything else being in the nodes, against an increased risk of lymphodoema. What the heck do I do if I've already got it?   Nobody seems interested in lymphodoema, and I haven't even found out where the local centre is or how you access it. They just tell you about it when you give consent and er... that's it. When I raise it, they say most people don't get it. ... View more

Thank you, Helena. ... View more

Lily, can I ask, have you had any numbness or impairment in that arm? It sounds as though you didn't have any problems at all.   I'm worried by people saying they have long-term numbness, and by the need to take so many precautions against lymphodoema. I love gardening, and I have a fairly wild garden! I don't plant bedding, I wrestle with trees and shrubs. I don't want to give up that. Also, I write and do a lot of creative things, so I don't want anything to take away my ability to do that. ... View more

Thank you - that's exactly how I'm feeling.   I now have an appointment to talk things through with the consultant.   Am still weepy and can't quite believe I'll get to the end of this or be as strong as you describe. I've already had to deal with a lot in my life, and I was strong in dealing with that and I've made it through (sometimes by the skin of my teeth) - but this is something different. Not better, not worse, just different. At the point where I felt I knew how to llve with the other issues, and felt confident about doing that, along comes this. More lessons to learn. ... View more

Thank you Lily - cross-posted! ... View more

Thank you.   I think it's really hitting me about the whole cancer thing right now. I'm crying now and that's the first time since this began. I don't know what to do for the best - overall, I mean. If I knew there would be a good outcome (in terms of the cancer and the side effects) I would go for it. But if there's a bad outcome, I'd rather just be me, as I am now, for whatever time I've got left.   And who knows? Maybe there's no more cancer in the other nodes (in which case I begrudge going through the op!) and then maybe radiotherapy will fix everything. Or maybe it will be yet more bad news. The uncertainty of all this gets to me, the feeling of being trapped and hurtling towards something I don't want. You brave ladies go through so much, and I feel like I've fallen at the first hurdle. Today I feel like I haven't got it in me to do any more.   I've had two people in the family die of cancer at about my age, and it just feels like everything is taken away from you, a bit at a time, while you suffer. This is really colouring my view of my own situation. But then I know someone else who had it and she not only survived but many years later, you'd never know she'd ever had it. Everybody's case is different. I don't know what mine will be. I don't want any of it.   I'm just an emotional mess today, and it's been building up - I don't see how I can have this op in this frame of mind. Yes, I'll call the BCN again, and I've been writing things down. I'm so afraid my mind will go to mush when I speak to her. I spoke to one of the lovely nurses here yesterday, and she was great and we were discussing factual, practical stuff - but I kind of went to pieces after that call.   A practical question: I'm worried about the after effects of the operation in terms of using my hand/arm. Has anybody got any advice about/experience of that, long & short term? ... View more

Thanks, everyone, for all the replies. You mentioned seeing the nurse for dressings a week after the operation. My next appointment is 2 weeks 5 days after the operation, to see the consultant again. When should stitches come out, or dressings be changed? I think they said leave everything in place for 2 weeks. ... View more

Thank you so much! It's a relief to know it's normal. ... View more