• Why does surgeon sound so confident I won't need a compression sleeve?

    Asked by Grandy on Saturday, March 23, 2013

    Why does surgeon sound so confident I won't need a compression sleeve?

    I get surgery in 4wks. The surgeon sounds confident (twice now) that I won't need a compression sleeve. They will be taking out some or all of my nodes because two have been tested and were affected.

    I have Fibromyalgia and a hot elastic sleeve sounds uncomfortable... Bras are really itchy!!! I'd think a sleeve would be worse!!
    Hope it's not kind of a bait and switch!!

    7 Answers from the Community

    7 answers
    • gwendolyn's Avatar

      Most surgeons are natural optimists. This is a commonly held stereotype I find to be true. They are being sincere. They may not know much about lymphedema either. Mine didn't anyway.

      My surgeon said I wouldn't get lymphedema before the surgery. A couple weeks after my surgery he told me if I didn't have signs of it by then I was in the clear. He was wrong. I did get it. I worked closely with a lymphedema therapist for a while and have it well under control. I wear a sleeve/glove when exercising. The strategy is to exercise your arm, very gradually at first, to train the remaining lymph nodes to pick up the slack. Get yourself to a physical therapist who is knowledgeable about lymphedema as soon as your surgeon allows after surgery.

      The fact of the matter is you don't really have a choice: You need to have lymph nodes removed. If you leave the cancerous lymph nodes alone you will have far worse problems than lymphedema. I'm sorry. I, too, greatly feared lymphedema. I found it's manageable. You may have to deal with it, or you may not. Either way, it doesn't change the type of surgery you need.

      over 5 years ago
    • nancyjac's Avatar

      The average person has 600-800 lymph nodes, so your surgeon will not be removing all of them. Even if he removes 40-50 (which is quite a few more than typical), that will still leave you with more than enough to operate your lymphatic system. What exactly makes you think that the surgeon sounds confident that you won't need a compression sleeve. Did he state that or are you making that assumption from what he said? While lymphedema is a real possibility for anyone who has lymph node dissection, it is not a foregone conclusion and it is not even a probability, since less than 50% of those patients get it. Maybe that is all he is trying to convey to you so that you don't set yourself up for a self fulfilling prophesy for lymphedema. As Gwendolyn said, you need the treatment. Whether lymphedema is a result of that treatment isn't something you can control, but neither do you need to assume it will happen.

      over 5 years ago
    • Ydnar2xer's Avatar

      If you can, postpone worrying about whether or not you will get lymphedema. After all, as it's been said, not everyone gets it. I had two lymph nodes dissected; luckily, both were clear. Sometimes I notice my right armpit bulging a bit; that's when I get my sleeve on for a day and exercise that arm. But I really don't have to wear the sleeve every day; maybe that's because I exercise at a gym 4-5x a week and keep things moving.

      BTW, wearing a sleeve isn't all that bad. I kind of like the feeling of mine when wearing it. And mine is made out of LEOPARD stretchy fabric. I got it through Lymphedivas--you might try looking at them at www.lymphedivas.com/. They make a ton of "fashionable" sleeves that aren't so orthopedic looking, and mine was 80% covered by insurance. MUCH better (and more FUN!) than those Ace bandage type ones. Good luck!

      over 5 years ago
    • AlizaMLS's Avatar

      Dear Grandy,

      Hi, I'm Aliza a BC patient and Medical Librarian (retired). I do research and referrals and give factual (though not medical) advice for folks on this site and elsewhere.

      I'm also the ex-wife of a Physician (that's not normally a way I introduce myself), especially since I'm engaged to someone else but I married my husband during his 3rd year of Medical School and lived in hospital housing where he did internship/residency and was with him elsewhere through Fellowship and afterwards, so we had a lot of different types of physician friends.
      Being on the inside track - surgeons always sound confident. They're not normally anxious people who wonder "did I do this right?" They can't afford to be like that! (No doctor can), but especially not surgeons with the amount of potential litigation that they face. I'll let you in on a company secret-there is almost no physician out there who has not had a lawsuit against them. That doesn't mean the doctor's no good, just that this is a litigious society. I've had friends with BC who've had lymphedema but can't say that they wear a sleeve or not. They don't advertise.

      I hope you get good practical advice and wish you the best practical outcome for your surgery!

      Warm Wishes,

      over 5 years ago
    • Grandy's Avatar

      Thanks, that all really helps me, each of your statements. I appreciate the experiences AND facts! Both are great to hear.

      Like I said I have FM and so the worst part of this for me is my head being even itchier than it usually is, and I was SO looking forward to not having to wear an itchy bra anymore!

      And NancyJac, now, I understand why he said at first that they don't take them all, and this time he said they would.. It may be he meant all the ones IN my breast. And I didn't ask about lymphodemia but if I'd need a compression sleeve.

      They biopsied 2 that looked enlarged or odd, and both were cancerous. So, like was said, I don't have an option, just want to go in with a bit more understanding of what i might experience a month from now and then afterwards.

      My MIL is a 25+ yr. survivor and she's worn the sleeve and glove these years.
      So far this has not been a real big deal for me, but of course I have my concerns, especially since my neurological system is wonky!

      Ydnar, I'll copy that web site, thanks!

      Again, I'm so glad to get such valuable info!!!!

      over 5 years ago
    • karen1956's Avatar

      My BS said she only took out the first layer of lymph nodes (there are 3 layers) to minimize my risk of LE...I'm 7 years post bilat and so far so good....and like you, I knew going into surgery that I had positive nodes from biopsy so had axillary dissection on BC side at time of bilat.....and since my recon I dont wear a bra......

      over 5 years ago
    • Grandy's Avatar

      Thanks Karen, I just love getting all of this wisdom amd knowledge from those who have been where I am.

      I enjoy everyone's honesty too!
      Aliza, I think it was a GREAT way to introduce yourself to someone in my position!!! :)

      over 5 years ago

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