Has anyone with lymphoedema had a masectomy or reconstruction?
How did your lymphoedema affect you? Was there any special measures that you needed to take?
Thanks
Maccy
Maccy
There is BCC publication on Reducing the Risk and Lymphoedema itself. Loads of advice in there and have a look on some of the lyphoedema threads on the forums. I’m going to get fitter with a compresion sleeve tomorrow as a preventative measure before going on a long flight
all the best
Hi Maccy
Here’s the link to the publication Wizzbaby has suggested above:
breastcancercare.org.uk/docs/reducing_risk_of_lymphoedema_0.pdf
You are welcome to contact our specialist nurses regarding your specific query, please call our helpline on 0808 800 6000 or you can also email our specialist nurse team via the ‘Ask the Nurse’ service which you will find on the front page of the website.
Best wishes
Lucy
Hi Maccy
Good question.
Firstly, I would suggest having a look at the ‘sister’ site to this one www.breastcancer.org, where there is a lymphoedema board on the forum and there are some good suggestions and remarks about this in some of the threads.
Also, checkout ‘stepup-speakout.org’ (can’t post the full link for this one, I’m afraid) - a new website with loads of lymphoedema info’.
From personal experience…I had a TRAM flap reconstruction in 1996, three years after a mastectomy. Shortly afer that, I developed lymphoedema in my right arm. I would say that it would now be impossible to prove that the reconstructive surgery triggered the lymphoedema, but it could well have been the last straw for the lymphatics on that side. As my physio said to me ‘the more often they go in with a knife and fork, the more incidental damage could be done’. On the other hand, I did have the surgery 3 years after the mastectomy - and 3 years later is round about the peak time for developing lymphoedema.
I have read that there is an increased risk of triggering lymphoedema when reconstructive surgery is performed. I don’t think this was known, or recognised, when I had mine done. No-one talked about lymphoedema at all actually, back then - no warnings, no precautions, nothing.
Having said that, I was truly thrilled with my reconstruction and have never had a single problem with it. But…if I’d known about the risks of lymphoedema, I think I might have chosen differently and decided to stick with the prosthesis, which was, frankly, far less of a problem to me than a ‘fat arm’ is now. A prosthesis didn’t restrict my lifestyle half as much as lymphoedema does and will probably always continue to do.
However, you already have lymphoedema, so you may have a different viewpoint. If I were you, I would try to make sure that everyone involved in your op is aware of the higher risk of infection that you face. Perhaps your lymphoedema nurse can do some liaising for you? Arrange a meeting, perhaps. Lymphoedema awareness in the general medical population isn’t good and the necessary precautions can sometimes be ‘pooh-poohed’.
Also, this is just a thought - you might want to mention ‘prophylactic antibiotics’ to your surgeon as a means of reducing risk still further - whether he/she would be prepared to do this is another thing.
And of course, they need to know (and maybe even understand why) that they cannot cannulate or take BP on your '‘bad side’ - it’s amazing how often they try!
I’ve given you a load of musings, I think - hope there’s something here that is useful.
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