Just diagnosed with lumphodaema

[isabella2015]

Hello! Ive just been diagnosed with lymphodaema on Monday after having an appointment at the Breast cancer clinic, where they suspected the return of cancer oar/and a clot in my right arm, thats all I know I have something called lymphodaema that I dont think Ive ever heard of. A three month waiting list for the clinic (south ~Devon) and acouple of leaflets sent to me from the lady I called who said I'd need a sleeve, I became a member here and to my horror discovering about this ailment, illness, decease \ - which is it? Because I was worried about a clot or cancer back, this was a relief. Is massage good for it? how do I know what kind and who to go to, again I asked and they said they couldnt recommend anyone. Any ideas on what I should do for now? thankyou!! I have polymyalgia I think due to radiotherapy when I had a lump taken from my right breast, so thought the pain was from that and didnt take much notice.

[Lynora]

Hi Isabella2015. Welcome to the site. You could also contact the Lymphoedema Support Network - 0207 351 4480 - their Helpline is manned (or womaned!!!) weekdays 10-4. They are very helpful, and usually lymphoedema patients, so very understanding of the ‘condition’ (rather than a disease) that you have developed as a result of your cancer treatment.

There are a few independent lymphoedema therapists in your neck of the woods, who would be able to teach you how to massage, manage and control your condition - a register is available here: mlduk.org.uk/therapists

[isabella2015 in reply to Lynora]

Oh dear now I don’t know if I replied to you. Or where to find out if I did! LYNORA thank you so much I phoned the helpline, very helpful. And have had a very nice therapist I went to locally ( recommended by someone on here) on Monday and intend to go as often as I can IHOP’s you are improving. Xx

[veriterc]

You poor thing. I do sympathise. The NHS is bad at handling this problem, but if you are going to Europe any time in the future, do try and see if you can consult a consultant there. I had NO help from NHS, but a Hungarian nurse suggested MLD (manual lymphatic Drainage) massage. This has dramatically reduced swelling. But we have to pay for this - I pay £40 a month for a hour's massage. Do become a member of LSN (L. support network). They are very helpful and supportive. I write about my experiences on aftercancers.com/lymphoedema. Good luck.

[isabella2015 in reply to veriterc]

Yes I am now a member of LSN and thanks to here I have a therapist, and went for my first massage last Monday. I am waiting to hopefully have a sleeve fitted. I am going to Spain ( Fuengirola malaga) in a couple of weeks for afew weeks so hope I can find someone there! and coincidentally a cousins daughter in Madrid does the special massage so I will be seeing her in April. Thanku VERITERC very much

[lovesradio]

It is a bit of a shock when you are first diagnosed , I felt a bit mystified as the physio was marking my arms with ink dots and measuring them both. Then to learn that It's life long and wouldn't go away was another shock.

That was more than 10 years ago. In the intervening years I joined LSN, this forum, and learned about self management. Cornerstones of treatment, compression arm sleeve, skin care, sld, and suitable arm movements. I swim twice a week and practise yoga, and wear my arm sleeve every day, and can now leave it off if on a 'posh' night out (not that I go to many!)

[isabella2015 in reply to lovesradio]

Gosh LOVESRADIO!! well done caring for yourself so well, I hope to follow suit ( started machine Pilates afew months ago - helping with my polymyalgia) and have found a mld therapist nearby - thanks to a lady on this forumn. THankyou for you empathetic and helpful suggestions. Best wishes to you x

[oliver6627]

Hi Isabella. I go to a lymphoedema massage specialist in Totnes. I’ve had lymphoedema for six years following breast cancer. Is not great at the moment. She’s excellent. Amanda Morris. Look her up.

[isabella2015 in reply to oliver6627]

Oliver 6627!!!i went to Amanda last Monday thanks to you! She suggested we should meet and I would love to - I think there is a way of messaging privately isn’t there? I’m going next Monday and live around the corner to her! THankyou, THankyou. Xx

[memetime0029]

I am so sorry you have this and I pray you can find the answers you are looking for. When I was told I had it and not knowing how I got it that terrified me but since 2015 the year I was diagnosed and did not have cancer so its a mystery to me. Praying for you .

[isabella2015 in reply to memetime0029]

THankyou very much for your message, very caring x

[memetime0029]

We are fighters, we are not going to allow this to get us down, we are going to beat it . I pray they find a cure but meantime we have to keep our heads up, support each other, and beat this . You on with me ???

[veriterc]

If you are going to Spain, what about asking round if you can see a specialist ther about your Lymphoedema? I have found local tourist boards usually know who is the best. It's sad to say, that our National Audit Office, the World Health organisation and others all agree UK had worst cancer care in Euope, and you might be surprised at the expert medical help that is available. I certainly got far better attention in Europe, and thanks to suggestions I have now managed to reduce swelling all over body, especially in legs - which are no longer like rugby player's thighs, but almost completely normal.