Lymphedema and Medicare

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Mavericksmom
Mavericksmom Member Posts: 635
edited August 2022 in Lymphedema

I just got home from what was supposed to be my second therapy for breast cancer. I actually had no therapy at the first session, just a consultation with the therapist.

Apparently Medicare will not pay anything towards garments. I can't afford them and can't bring myself to use hand outs or funds set up for people who can't afford them.

After giving me that news, I cancelled the remaining sessions that were set up for me and came home.

The therapist felt so bad, she game me information of options for support, organizations that help women in my situation.

I am going back to my gold standard of lymphedema care, large long sleeve blouses that hide my swollen arm. I have been lucky over the years, never had an infection even when I had a vaccine in that arm, accidental BP in that arm, (both happened one time and both because I wasn't focused and was chatting with the nurse), bug bites, and a complete shoulder replacement.

I know it may sound vain, but I won't take hand outs. My feeling is leave that for people who need the care more than I do.

I got lymphedema immediately after I had my lumpectomy with removal of 24 nodes in 2003. I spent about 5 years diligently having therapy, wrapping and wearing garments 24/7. Then the custom made garments stopped fitting and no matter what I did, I couldn't get them to fit, so I quit. With my recent mastectomy and DIEP reconstruction the swelling has increased in my arm pit slightly and my MO wanted me to have therapy. I can neither take the emotional toll this has had on me, nor the financial one.

On the upside, my schedule suddenly became a lot less busy! I do feel sorry for those who have lymphedema and need therapy and wrapping and are on Medicare. Ironically my representative told me they would pay all but 20% but I guess he didn't realize that Medicare's policy is not to pay for any of it. I have a really good Medicare Advantage plan through my husband's retirement from a major drug company, but I guess they won't pay for anything that Medicare won't pay for. Oh well, could be worse.

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  • LW422
    LW422 Member Posts: 1,312
    edited August 2022

    MavericksMom--I was reading older posts about LE and came across this one that you wrote in 2019. I just wanted to ask if you are still of the same mind, to not use compression garments? Have you had any problems with your arm?

    I had 32 nodes removed last year with my mastectomy (I have IBC so ALND is standard of care.) I also had a lymphovenous bypass at the same time but in recent weeks I have noticed some swelling in my fingers and axilla. I know I have the beginnings of LE but I am just unable to wear those stupid "garments." I have tried several brands, sizes, styles and absolutely cannot deal with compression. I'm one of the weirdos with extreme tactile sensitivity to fabrics, labels, etc. Having anything binding on me anywhere makes me want to claw at my skin. Ugh. So I know I am going to be non-compliant when it comes to garments so I don't even want to waste my money.

    In keeping with the thread, I am also on Medicare so I know that buying sleeves will be on my dime, and will be a waste.

    Sorry to dig up this older thread, but I'm interested in how you are faring with the LE. Thanks.

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited August 2022

    Hi Iw422! You would not believe how perfect the timing of your post is! I just found out today I have breast cancer again, my third time! I was refused a double mastectomy by the surgeon I had in 2019. He said it was hospital policy not to remove a healthy breast unless the patient was BRCA positive. I am not.

    Miy lymphedema has remained stable without garments. Sometimes I get more swelling in my hand as I notice my wedding ring gets tight, but then it will go back to being comfortable again. I usually need to remove my ring for several days. I am not sure the swelling is part of the lymphedema, or something else. My LE arm is twice the size of my other arm.

    I switched all my records back to my local hospital last month, totally unaware that I would be diagnosed with cancer a few weeks later. I made an appointment with the breast surgeon there, who ironically had been hired when I had the abnormal mammogram in November of 2018, but hadn't moved into his new office yet. The hospital had been without a breast surgeon for several months, thus the reason I went to the cancer hospital in the city. Anyway, my new surgeon, who I immediately liked, wanted me to see a plastic surgeon at the hospital who does lymph node transfers. His office even made an appointment for me. I ended up canceling that appointment because I was under the impression Medicare won't pay for that. I don't think it was the surgery you had, but I didn't think Medicare would pay for that either. I have a Medicare Advantage plan from my husband's retirement. When I called the insurance company, the representative said it depended on some "code." Needless to say, he wasn't much help. I looked at the Medicare website, but I couldn't find anything helpful.

    While I don't think my post is very helpful to you, your post was very helpful to me and I can't tell you how thankful I am that you wrote your post! To know you had some lymph node surgery and have Medicare gives me hope. I am guessing that means Medicare might pay for what I need? At least your post caused me to write that question down to ask my surgeon when I see him next week. It at least sounds like it might be worth revisiting that subject with the plastic surgeon.

    I am not sure if this is good advice to follow, but I also don't "baby" my arm. I won't do anything stupid, like trying to lift 50+ pounds, or push heavy furniture, but I carry groceries with my lymphedema arm and even use small weights when I do strength training. I have total reverse shoulder replacements in both of my shoulders. When I had the shoulder replaced on my lymhedema side, I was worried it would make it worse. They wrapped it for surgery and I kept it wrapped for a while afterwards, I don't remember how many days, but surgery did not make the lymphedema worse! Not sure if I was just lucky.

    I wish you luck and I hope this was at least a little helpful! I am praying I don't get LE in my other arm!



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  • LW422
    LW422 Member Posts: 1,312
    edited August 2022

    MavericksMom--thanks for the reply; it was very helpful and I appreciate it. I have a feeling there are a very high number of people with LE who don't even realize they have it, or are non-compliant for other reasons. I had never even heard of LE before I was diagnosed with BC and started posting here... certainly none of my doctors mentioned the possibility until I brought it up. Sad but true.

    I am so sorry to hear of your most recent diagnosis, bless you. I hope that you will have an 'easy' treatment (if there is such a thing) and complete recovery. I'll be keeping up with your posts to check on you.

    As far as LE surgery, I'd hesitate to have a node transfer because I have heard it can cause LE in the area where the nodes are removed for transplanting elsewhere. (I don't think I'd want to trade arm/truncal LE for leg LE!) I see my plastic surgeon next week (who performed the bypass) and I'm going to ask about having another bypass now that things have settled down with surgical healing. Medicare and my Aetna Advantage plan absolutely paid for the procedure last year but I have no idea how it was coded for billing.

    I haven't babied my arm either. I do elevate it when I'm sitting, and I try to do stretches and "fist pumps" during the day as I think about it. Like most cancer survivors, I just want to feel NORMAL and this LE crap is for the birds. I'm hopeful that there will someday be changes to Medicare coverage so that women who need LE garments will have access to them the same as mastectomy prosthetics and bras.

    Take care and keep in touch.

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited August 2022

    Iw422 Thank You for your input. One of the reasons I canceled my appointment with plastics was because I feared getting lymphedema somewhere else. I agree, if I don't have to mess with them, leave them alone.

    I am fearful now, that if I need nodes removed during my mastectomy, I will get LE in that arm too!

    I still can't believe I got cancer in both breasts and I am negative for defective genes for BRCA and ~39 other genes associated with breast cancer!

    I will keep you updated! Feel free to private message me anytime!

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  • LW422
    LW422 Member Posts: 1,312
    edited August 2022

    MM--I totally understand your fear of getting LE in the other side. I was all set to have a prophylactic mastectomy of my remaining breast until I started reading the LE posts here and learned that many posters have gotten LE with just a single node removed... or even worse, NONE removed. I guess there's a chance anytime they cut into breast tissue of messing up the lymph channels, which is really scary. So I have resigned myself to having one "D" cup breast and being lop-sided because I am so afraid of LE.

    I just hate that you have to go through all the anxiety and cancer-related crap again. Bless your heart, I can only imagine how devastated you must feel right now. I'm just so very sorry.

    As far as billing Medicare for the bypass surgery, I am a patient at MD Anderson in Houston so I guess they just knew how to code things for coverage. Can you call the billing department at the facility where you receive treatment? Surely they know how to code these things.

    Feel free to PM me anytime as well. I don't come here as often as I used to but I check in every few days. Please let me know how it goes!

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