Hormone treatment and increased swelling anybody? - LSN

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Hormone treatment and increased swelling anybody?

sleeviejeebies profile image
8 Replies

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?

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8 Replies
Lynora profile image
Lynora

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

sleeviejeebies profile image
sleeviejeebies in reply toLynora

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

veriterc profile image
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 profile image
sleeviejeebies in reply toveriterc

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 profile image
veriterc in reply tosleeviejeebies

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 profile image
sleeviejeebies in reply toveriterc

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 profile image
Perido in reply tosleeviejeebies

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...

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

sleeviejeebies profile image
sleeviejeebies in reply toPerido

That's interesting - thanks Perido!

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