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
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.
X
S
I developed lymphoedema about 3 months after treatment finished and had my reconstruction 6 months later. I was told it shouldn’t affect my lymphoedema and it didn’t.
I had Mastectomy and chemo back in 05 and had recon just 4 weeks ago and was also told that having recon should make no difference as the damage was already done. I must say that up to now although early days I know, I have noticed no ill effects at all in fact I have noticed an improvement but I know this is only due to having rested a lot to recover from the recon. I am hoping not to have to rest for too much longer though as I am desperate to get back on my horse again 