LE risk according to surgical team, my fear regardless
I'm about 6 weeks out of surgery (lumpectomy + SLNB where they took 2 nodes), have a BMI over 30 (which is higher risk of lymphedema):
I have started doing my daily brisk walks/slow jogs again (35 mins every day). I'm freaking out a bit about the possibility of getting lymphedema because I keep getting mild swelling in my armpit area/a little around the back part of the bra strap area after I work out, and I called my surgical team.
The nurse assistant to my surgeon (very good doctor at one of the top 4 cancer hospitals in the country) called and said because I only had 2 nodes out and I'm 6 weeks after, at this point there were absolutely no restrictions on what I can do, including (I asked specifically) bowling, tennis, fishing, weight lifting. No restriction on flying, blood pressure or blood draw/injections in that arm. She said to be careful and watch the swelling after exercise, but that it's post-surgery swelling and it might take some time to die down -- she said everyone is different for how long this type of swelling goes on. She said the risk of lymphedema is super low and was unconcerned when I pointed out that I have a BMI that puts me at higher risk. At my first meeting with RO (different local hospital) she also said I had a very low/almost non-existent risk of lymphedema with just 2 nodes out and was also unconcerned when I raised the question of risk -- I start radiation on monday.
Is she right? Or should I try to find a certified lymphedema therapist to ask these questions? Should I ask the lymph therapist at the local hospital I'm getting radiation at, or seek a therapist at the top-ranked NCI I got surgery/my MO is at, in case their information is more up to date?
(Note: I'm a little leery of the nurse assistant's recommendations, because I had also asked about the abdominal cording I got (I think it's probably Mondor's) and she said "oh that'll go away in about a week just take some aspirin" which is completely contrary to what I've read on Mondor's lasting several weeks to several months))
When I look through these forums especially here in the Lymphedema section, so many people are saying that even with SNLB one must wear a sleeve when flying to be safe, and not lift anything heavy like luggage or play any sports like tennis or bowling because it could trigger lymphedema at any time -- even a mosquito bite.
I already have severe anxiety prior to BC and this fear about lymphedema is spiking it to unprecedented heights, I'm scared after each time I work out and I'm having trouble sleeping (and keep checking my fingers/arms/armpit/back and asking my husband to check also every day multiple times a day).
https://www.wbur.org/onlyagame/2018/11/30/sandy-sm... <-- an article on dragon boat racing with BC survivors and how 2 doctors think the upper body repetition thing is a myth for causing lymphedema.
I don't know who to believe at this point?