Insist on being refered

Hi

I have been plagued by a swelling that the surgeon, the oncologist and the BCN suspected was a seroma since June, following rads ending in May.

The surgeon refused to let it be drained more than twice because of the risk of infection and said it would gradually reabsorb on its own over a period of time.My oncologist suspected that it would not reabsorb but would gradually harden.

My instinct having read lots on this site told me that much as I agreed that there was some sort of seroma involved there was possibly a degree of Lymphoedema as well. In the end the BCN agreed to refer me to the Lymphoedema nurses, more I suspect to keep me quiet than anything else.

I had my appointment today after a wait of some time. She took one look at my breast/chest and is absolutely sure that there is truncal
lymphoedema, for which she has shown me massage that I can do myself, is referring me to a specialist for MLD, is going to try Kinesio taping and has suggested some excercises.

If only I had insisted on the referral earlier I would hopefully not be in the discomfort that I am in now. I realise that this in a lifetime situation but would already be attempting to deal with it, rather than the frustration I have felt over the last few months.

So girls, don’t take no for an answer, if you think you have a problem -push to see a specialist.

Andie

Andie, what a time you have had.

When I originally got referred I was told my lump was fatty tissue, nothing to worry about!!, I asked if I could get a mammo just to put my mind at ease, yep it was fatty tissue but my cancer was inside it!!

always go with your gut instinct, i dread to think what could have happened to me if I had walked out the hospital that day

take care

Carol xx

So glad you’ve got some help at last, Andie.

But such a shame it’s taken so long for you to get some relief for your problem.

I think we’re all aware of the rationing that goes on, but it really is shameful that you have had to fight so hard for basic care like this.

You feel sometimes that no-one cares at all what happens to you, or what kind of a state you’re left in; after they’ve done their ‘bit’, you sort of go semi-invisible.

BCNs often seem to be appointed gatekeepers to lymphoedema services and there is often a reluctance to open them, probably due to financial pressure. Moreover, I think a lot of medical people feel that quality treatment for lymphoedema is a luxury item! (How little they know…)

I would thoroughly endorse your comments, and Carol’s too. It pays to get these things dealt with sooner rather than later, even if it means the toys going out of the pram…not always easy to do, tho’.

X

S