Arm Lymphoedema

[lizamorton]

I have it in my right arm after breast cancer and now I have trunc lymphoedema

[Lynora]

It can happen. Have you been seen by your lymphoedema clinic? MLD might help too.

[veriterc]

Why on earth haven't your MDT referred you to a L. clinic? Thank heavens Prof. Johnson, the new cancer czar, acknowledges we have to work towards European standards, because someone should have picked this up. When you get an appointment ask about MLD - I had it, and was only thing that worked for me - but there are different sorts. Good luck.

[lizamorton in reply to veriterc]

I have been to the clinic but they do not have any solutions. They gave me some excercises to do but my right shoulder is very painful since the radiotherapy. They seem to think it is just fat but I have lost over a stone with the chemo and I never had this before. It is pressing on my stomack and affecting my breathing. I did have some private MLD when the swelling was just in my arm But it was not doing much good. I have bought on of these machines which sort of does it.

Liz

[veriterc in reply to lizamorton]

Liz

This is shameful that you aren't getting better care. Have you tried phoning the Helpline run by Lymphoedema Support Network? And go back to your doctor and say you want a 2nd opinion - and why aren't you getting better care. And good luck. It's appalling that we have to fight for better care.

[Lynora in reply to lizamorton]

If your breathing is affected, please stop using the machine - you must see your GP, and, if necessary go back to the breast cancer clinic.

Radiotherapy does all sorts of damage, but you really need a thorough assessment. I had treatment in 2001, and no real problems until last summer - I am now back at the clinic for ongoing assessments. No active cancer, thankfully, but nerve pain due to radiation fibrosis.

[buddygreco]

I do not have Primary Lymphedema. I have Systemic Lymphedema, caused by a biopsy 'Butchery', my nurse friend said it was. I later learned l had Dercums Disease, one year later. The biopsy on my left arm was deep, long & very invasive. When l woke from surgery l was in agony, the surgeon said, 'your respiration is low, l cannot give you anything for the pain' l was screaming and only my guy heard him. They gave me too much Anesthesia causing the low respiration. Same night after surgery, my legs where swelled up, like edema. In a few days so where my arms. For a year, Both the surgeon & my PC doctor told me its Nothing, just side effects of surgery. Neither one of them knew what l had or what Systemic Lymphedema is. In one year after this biopsy l learned from the dercums specialist what l had, she looked at me & said your have head to toe Lymphedema. She also confirmed Dercums Disease. A long timer afterwords, she told me the pain l was experiencing, almost fainting when l got an injection, that l had also got from this butchery, Hyperalgesia. So this butcher gave me two catastrophic disease just by doing a biopsy on top of the catastrophic dercums disease. My sister in UK thinks l'm a hypochondriac, in fact both my sisters abandoned me when l got sick.