had my 8th herceptin yesterday and told Onc about my swollen achy fingers on my operated side. He has referedme to a breast care nurse as it could possibly be mild lymphodema. i feel really fed up now, keep crying over the last few days. Onc says my hormones are all over the place as had my periods return after an absence of 7 months and have been taking tamoxifen for about 3 months without any real side effects. im wondering if the tamoxifen has anything to do with my fingers, i had to take my wedding ring off as well as that was to tight. anywaythe breastcare nurse called me today and is going to refer me to the lymphodema climic which is based at a local hospice, that upset me at the thought of going to the hospice!. i just feel that im on such a long journey still another 10 herceptins to go and then this problem. i dont know whats the matter with me, 2 weeks ago i felt really positive and happy as have a great prognosis but now i feel really low, sorry to moan ladies, you are the only ones that really understand xx
Hi Sarah
Sorry to hear about the suspected lymphoedema - a bummer.
I seem to remember reading somewhere that some studies have associated tamoxifen with swelling.
It seems quite common for lymphoedema clinics to be based in hospices - I think it all gets lumped together under the heading ‘palliative care’. (My old lymphoedema clinic was based in one for a time). On the positive side, you may find the hospice a refreshing change (I did) from the hospital - quieter and less waiting around. The car parking may even be free!
Thinking of you.
S
Hi Sarah
You may find it useful to have a look at the BCC fact sheets on lymphoedema and tamoxifen as they contain a lot of information and you may find your questions are answered in them. They can found by following the links below:-
breastcancercare.org.uk//docs/reducing_risk_of_lymphoedema_0.pdf
breastcancercare.org.uk//docs/tamoxifen__november_06_0.pdf
I hope you find these helpful.
Best wishes
Sam
BCC Facilitator
Hi Sarah
Sorry to hear about you suspected lymphoedema, i also suffer from it. Please do not worry about going to the hospice for the treatment, where i live in Stafford the lymphoedema clinic is also based at the hospice, in fact i go there on a Friday for day care, please let me assure you i am very fit and well but the hospice not only treats my lymphoedema but i get reflexology, foot massage (heaven) a 3 course dinner and a councillor, all free and brilliant. The hospice also does a drop in centre where you can do Tai Chi, painting and all sorts of activities. I have never yet seen anyone who looks so ill that it would upset me, the day unit and inpatients are seperate.
Once you have seen the lymphoedema nurse then you can get lots of help and support, i wear a special silver bra and have a foam channel as my lymphoedema is around my mastectomy scar and under my arm and sometimes quite painful and uncomfortable. My husband has been taught simple lymphatic drainage and does that every night for me before going to bed. You will also be given exercises to help and advise on how to care for your arm.
Please don’t let the fact that it is at the hospice put you off, you will be amazed how different you will feel once you have been and treatment starts.
Best of luck
Suzzanne
thanks for your comments ladies, feel a bit better about it now,still not convinced it is lymphodema, i still feel it might be a side effect from the tamoxifen but i shall find out soon xx
My lymphoedema clinic is in a hospice too. It’s brilliant! It’s like walking into a private hospital. The surroundings are much nicer than the NHS, the waiting area has comfy seats, they bring me tea on a tray in a china mug, and apologise if they are running five minutes late. And all for free. Also I get appointments to suit me rather than to suit them.
hi sarah
yes im in the same boat ! i felt exactly like you at 36 i did not want to go to the hospice for more treatment but i go weekly now and agree with the other ladies, i think its the fact its the hospice that frightened me but it is lovely surroundings and every body is so nice it is so different to hospital so try not to worry
galen x