Hormone treatment and increased swelling anybody?

[sleeviejeebies]

Hello, I'm a newbie here because of recent, terrible lymphoedema flare in my arm. I've been on hormone treatment for breast cancer for a year or so and I've started noticing that my swelling is beginning to worsen after each hormone injection - and lately reached proportions I've never experienced before. I've had very mild lymphoedema since 2014 but never before had much trouble with it. Has anyone else noticed a link between hormone treatment and lymphoedema?

[Lynora]

Recommend you contact your lymphoedema clinic and let them know your situation.

[sleeviejeebies in reply to Lynora]

Thanks Lynora. I did and have a bigger sleeve, which is helping a bit. Just wondering whether anyone else has experienced anything similar.

[veriterc]

Yes, so many of us have experienced this, but we are often cowed by the NHS and daren't speak up. I used to work as an investigative journalist (plane and coach crashes etc) and once you have delved for info in those situations you learn what to look for. I went abroad for better lymphoedema advice, and have written about what worked for me (all treatment prescribed by doctors, hospitals etc). I won't say this will work for everyone, but you might like to look at aftercancers.com/lymphoedema

[sleeviejeebies in reply to veriterc]

Thank you Verite. I took a look at your website and it makes for interesting reading. My oncologist denied that it was the hormone treatment that could be making my lymphoedema worse, but I did some cursory delving and found it listed in a patient information leaflet for Zoladex (which I suspect is the main culprit). I think I will investigate getting some private MLD, if practitioners are still offering it at the moment.

[veriterc in reply to sleeviejeebies]

It might help to look up American websites on aftercancers.com . I find they have brilliant information, written for patients by eminent specialists. Also, have you seen Kathy Bates on YouTube?

[sleeviejeebies in reply to veriterc]

Thank you - I will do. Yes, I have seen a couple of Kathy Bates videos: we need an ambassador like that over here (or perhaps there already is...)

[Perido in reply to sleeviejeebies]

Gemma Levine is a famous photographer (UK) and, as a result of her own experience with lymphoedema, became a strong advocate for more awareness and support for the condition/disease - see following video: youtube.com/watch?v=0xMfTRm...(Not working as expected?)

Gemma has co-authored a book with Professor Peter Mortimer called 'Lets Talk Lymphoedema: amazon.co.uk/Lets-Talk-Lymp...

[sleeviejeebies in reply to Perido]

That's interesting - thanks Perido!