Baseline Measurement for Lymphoedema

@Lynn65 I had a SNB and was told before that lymphedema was a rare complication. A rate of less than 5% I think my BS said. I've had no problems on that front. Poor you falling into that 5%! Hang in there and keep advocating for yourself. K xox

Oh, and the comment my bc nurse made was, lymphodema is very rare if only having sentinel node biopsy!  But this was after all the same nurse who said, when I got a seroma, “I wouldn’t have expected that!”  Lol

No baseline for me either.  I’m nearly four months post lumpectomy and SNB, (followed by radiotherapy) but still having problems with upper arm and side of chest under arm.  

I have seen a lymphodema person twice who has measured me and noted small differentials, but i wasn’t thrilled with her idea of suck it and see how it goes given that I can feel a difference, so have booked in to see another person who will measure bio impedance.  

I can’t tell if my problems are seroma related, nerve damage related, beginnings of lymphodema or all of the above. At various times I have tried doing the recommended BC surgery recovery exercises but each time have found that it seems to make that part of the arm worse.  I’ve stuck with just getting back into daily life and gradually getting back into light weights and very slow swimming, and trying not to overreach with that arm since it seems to make it worse.  These days exercise seems to be the recommended cure for everything, so I am trying to do what I can.  Hard to figure out what to do when I don’t know what I’m trying to counteract. 

my BC nurse said that they were wanting her to get certified to be competent in doing pre-surgery tape measuring of arms.  I’m thinking to myself, what in the world is the hold-up to having that service available to all bc pre-surgery patients?  Of all the things that can be less than ideal after surgery, i would have thought a “simple” bio impedance measure or at least arm circumference measurements would be a small step to provide very useful data for managing post surgery effects.   

A 2017 research paper, following almost 1000 people over 10 years, found a 41% incidence. Obesity, seroma (we still cling to the orthodoxy in Australia that lymphoedema and seromas are not related), chemo infusions in the affected arm and advanced disease all increase risk according to this study. OK, it's only one study, but what is well known and seems to me to be particularly unkind, is that lymphoedema can occur up to 15 years after treatment. Not rare and lurking!! 

I've heard that stat @afraser or approximately, 1/3.

Last stats I heard (may be a bit old) were approximately 35% of those with significant node removal get lymphoedema (short or long term). Not quite my definition of rare. 

@Brenda5 Most surgeons will admit to 20% with anx clearance and radio, Physio says closer to 25% unless radio involved, then add another 5%.

No baseline measurement and when I expressed lymphedema concerns before the full axillary clearance they said of lymphedema is so rare its not worth being concerned. Obviously surgeons are not getting feed back from physiotherapists about what is happening.

I didn’t get a baseline measurement before surgery. I realised that something was wrong with my arm when I developed an enlarged area in my arm. This was 6 years after surgery.