I have lipoedema - very briefly its a fat disorder which depends on oestrogen and causes me to put on weight around my legs and hips.
My oncologist wants me to start hormone treatment, but as she hadn’t heard of it she couldn’t tell me the effect it would have on the treatment, or the treatment might have on it.
Same for my GP - never heard of it, so no idea.
Thay are both telling me the decision is up to me, but how can I make it when I have no information or advice? I tried emailing the organisation which deals with lipoedema in the uk but they haven’t responded.
I’m at a loss to know what to do 
Emxx
Hi Em
I’m sorry I don’t have any answers or real advice for you. Who diagnosed you with lipoedema? I am assuming it was through the hospital - could you go back to who gave you the diagnosis and ask them?
I really don’t think it’s on for both your onc and GP to just shrug and say they don’t know. As your primary health professionals it is up to them to find out! I think you need a bit of foot stamping…
Good luck
Lu xx
Thanks Lu,
It was the nurse at the lymphedema clinic that diagnosed me, and I am currently waiting for another appointment but they seem to take months.
I think this is going to be the straw that breaks this camels back. I can’t face anymore fighting and footstamping and argusing just to get treated. I’m out.
Emxx
Hi emilysss
I’m sorry you’re struggling to get information at the moment. You might find it helpful to contact our “Ask the nurse” service. I’ve attached a link for you:
breastcancercare.org.uk/breast-cancer-services/ask-nurse
I’m afraid it’ will be after the Easter break though before they respond. In the meantime I hope you get some more support from fellow members on the forum.
Take care
Very best wishes
Janet
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