Breast Cancer Now Forum

Hi Rattles,    Sorry to hear about your bi-lateral lymphodema, which I also have. I also asked for a thyroid test from my foot at the local surgery but came up against this issue too. They advised me to go to the hospital blood clinic. I was planning that, but then had to have a blood test in A and E following chest pains (turned out to be a panic attack) which was taken from my right arm in the end, fortunately, with no ill effects. I've also since had a bone scan where the nuclear injection went into that arm too and it was fine. However, my situation is unusual in that I still have all my lymph nodes in my right arm, and the lymphodema in that side was most likely caused by a badly inserted PICC line 6 years ago. My left side lymphodema (cancer side) started after a wasp sting 6 months ago.    Given that you need regular blood tests I would suggest the hospital blood clinic as if you have had lymph nodes removed from both sides, it is too much of a risk for you to have blood taken from your arm.    Sorry to waffle, but hope I have helped a little...do you mind me asking how you have lymhodema in both arms? We are so unlucky..   Liz x ... View more

Hi ladies, a quick update..my lymphodema suddenly worsened in my good arm last month and I now have to wear a sleeve permanently  I was just getting used to it then two weeks ago had a wasp sting on my other side (where I have no nodes). This weekend the dreaded swelling has started...only in upper arm for now.   My nurse thinks the hot summer is to blame for my good arm. I am dreading the thought of two sleeves. Also, as a violinist this could have huge implications on my playing. Just wanted a rant!!  ... View more

Hi there..hey don't worry about rambling on, I do all the time! I'm sorry to hear about your lymphoedema. I have it in my good arm! it is a result of a PICC line that went wrong back in 2008. A month ago it suddenly worsened for no reason I can think of. I too have been wearing my sleeve and doing massage, etc. I had a hard, knotty type lump for a while in that armpit but it wasn't of concern, and could have been hardened lymph nodes.  Mine has softened. I wonder if yours could be an infection?  Maybe it is worth contacting your bcn for a proper examination. You must be anxious wating to hear from your gp too and I hope all will be well for you. You will find plenty of support on here.    Take care, Liz ... View more

That itching sounds terrible Jan..well I felt so fatigued on letrozole that it has been decided that I switch back to tamoxifen for a further 5 years. I feel quite a bit better already although have been anxious and weepy, but it is settling down.  ... View more

Thank you Lucy and JCJ for your words of support. I'm pleased to say that I feel quite a lot calmer. The "old" meds must be good for me. I'm still quite tired, but aiming to give work a go next week after a hopefully restful weekend,  and see how I go... ... View more

Hello ladies..I've just read this thread with interest. I am a peripatatic music teacher and was diagnosed late 2007. I had a mastectomy, chemo, rads and an elective second mastectomy in 2009. I have been working 7 hours for the last 4 years which I have been fortunate enough to be able to do financially. I needed more work so accepted a further 9 hours and had been looking forward to starting that this week. Having been on tamoxifen for 5 years I switched to letrozole at the beginning of August. Last week I felt  itchy, fluey and extremely exhausted. I was sleeping all afternoon and night. By last Friday the oncologist had decided I should switch back to tamoxifen for another 5 years but I have had a huge emotional crash this week , so much so I cannot go to work. I really feel like I have taken too much teaching on...I hardly sleep at night for worrying about all the different lessons I need to think about. My gp says give it until the end of the week (as I felt well on tamoxifen) and if no better I must go back. I have a lot of thinking to do. Being self-employed it is a case of finding others to take on my work, but I need the income  ... View more

Have a look at these very lightweight prosthesis. I've had a double mastectomy and they work great in an underwired bra.  http://www.woman-zone.co.uk/t2/ABC-Prostheses/c30/p389/916-First-Form/product_info.html I haven't looked at tops, but hope this helps. Liz ... View more

Thank you! I felt fluey yesterday and have no energy today whatsoever so am going to ring my breast nurse! ... View more

That's great news Jood! I started my letrozole tablets today! Thank you for sharing your experience and hope all continues to go well for you. Liz x ... View more

Hi..I have lymphoedema in my "good arm"! It came on after having a PICC line removed back in 2008. The PICC line was not a success from the outset, as I couldn't straighten my arm after it was inserted, and after one chemo it had to be removed as it would not flush. My arm lymphoedema is mild but it did flare up after my last flight. It has gone down since. I also have it in two fingers on my good side, and that came on three years ago during the summer, not sure why... It is worth knowing that when I asked the same question as you as to why it had come in my good side at clinic, the nurse said that half of her patients had never had cancer, and often there was not an explanation for it, sadly. Liz x ... View more

Thank you so much ladies for all your feedback! I have decided that I will start the tablets, as my tamoxifen is just running out, and see how it goes...can only try! I would never forgive myself if I had a recurrence and hadn't at least tried them. Thanks again, Liz x ... View more

I put off doing anything until this Wednesday, having had a very bad Tuesday, knew something had to be done. The aches and pains have gone, but I feel iller, it gets worse as the day goes on. I feel pretty good in the mornings, but early afternoon start with a "fuzzy" head, slight nausea and dizziness. It's then on and off for the rest of the day. It's worse when I am sitting down, going out for a walk actually improves things. My gp thinks it may be hormonal, and I had a blood test today, the results will be back on Wednesday. As I write now I have a headache coming on, and I never get them! Yesterday was the same, a headache in the evening. I know I should have gone sooner, but was too scared. ... View more

Hi, I agree with Lily, my feet are terrible first thing, hobbling around for 5 minutes, then fine, but I do an hour's dog walk after that! I've started on the glucosamine with chondroitin as recommended by others but yes to see improvement, been about a month now. ... View more

Thanks to all....yes I am scared but will ring on Monday, I keep thinking, how can it return when you've had all that chemo/ rads? but two of my friends have secondaries so..yes Karen I remember you from those FEC days, glad you are doing ok. I will let you know what happens, in the meantime off to my holiday home for a night to take my mind off it x ... View more