• Anyone dealing with Lympedema?

    Asked by Madolyn on Wednesday, September 20, 2017

    Anyone dealing with Lympedema?

    After 15 yrs. of Bi-Lateral Breast Surgery, I developed Lympedema of left arm. At no time was Lympedema suggested as a possibility. Luckily I found a Lympedema Therapist and now I know how to handle this problem.

    9 Answers from the Community

    9 answers
    • ikedo's Avatar

      I think I might have it what were some symptoms and who did you go to for diagnosis? Went to family doc and she never really looked at it or any suggestions either.

      6 months ago
    • Judytjab's Avatar

      Wow! Fifteen years later? That's scary. Like ikedo said, what were your symptoms?

      6 months ago
    • Debbo's Avatar

      Tell us more!!

      6 months ago
    • tlalex's Avatar

      This is a topic you have to research on your own! It's in the fine print of all the paperwork they give you as a possibility down the road. It can develop at anytime in your lifetime after surgery. I only had 4 nodes removed but I immediately developed what's known as cording-At first from underarm to elbow then moved all the way down to my thumb-i couldn't unbend my right arm without excruciating pain. Felt as if several rubber bands were stretched to their limit and about to pop! And reaching for anything wasn't going to happen-but you forget and try anyway-ouch!!! I had to discover its name, symptoms and possible help on my own and it took some effort-very little info and obscure. My radiologist at MD Anderson recommended PT when I couldn't put my arm over my head but it took 6 wks to get in. My therapist was a lymphedema/cording expert and I had relief after the first session and it was gone within 2 weeks. She continued to treat me for 2 months for mobility and strength training during and after radiation-they also play down the lifetime effects of radiation on your muscles in your chest, shoulder and arm as well as the possibility of lymphedema. I'm so grateful I had a reason to seek out PT and am now able to deal with active and preventative issues-I think every breast cancer patient should be given at least minimal PT to combat the muscle fatigue and regain strength during/after surgery/radiation and be educated on the need for and program of daily stretches/exercises that are easy to do and only take about 5 min most days/15min 3x a wk when I add a few weight moves. I can feel a difference when I skip a day! ITS SO IMPORTANT for quality of life and minimize risk of frozen shoulder and lymphedema. Ask for PT if it's not offered (experienced in lymphedema because you want preventative care!) My insurance paid 100%-even paid for a compression sleeve/glove. ( oh! Another great tip she gave me-massage incision areas several times a week to avoid scar tissue adhering to chest and armpit wall that will eventually lead to chronic pain!)

      6 months ago
    • ChicagoSandy's Avatar

      Most doctors--even many breast surgeons--are ignorant about LE because med school curriculum usually devotes less than an hour (out of 2 yrs. of classroom instruction and 2 of clinical rotation) to the lymphatic system. My BFF had a BMX with SNB. When I asked her surgeon and NP about LE precautions (especially with both arms at risk) regarding needles & BP cuffs, they scoffed. The surgeon (one of the top oncoplastic surgeons in the region) actually told me "They use compression to treat LE--so isn't it ridiculous to avoid tourniquets and BP cuffs?"

      Fortunately, the hospital/cancer center that treated and treats me has two LE docs--one of them a founder of LANA and author of the federal Lymphedema Treatment Act (wide bipartisan sponsorship but stuck in committee). Before my lumpectomy & SNB, my surgeon's NP told me that the fewer the nodes disturbed the lower the LE risk, but that it's a lifetime risk and it is NEVER zero. She measured me for a sleeve & gauntlet and urged me to buy them and try them out before my next planned flight >4 hrs. My insurance at the time covered them--but unfortunately, the boutique didn't take my insurance. (And Medicare doesn't cover compression wear or LE treatment equipment--a major reason why the Lymphedema Treatment Act needs to be passed--even though it covers two mastectomy bras a year and a prosthesis every other year, even for lumpectomy patients).

      My history is similar to yours--my LE manifested originally as cording in my forearm the week after finishing rads. I made an appt. with the LE doc, but the cording resolved before that and I took my flight as planned, wearing compression as the NP directed. The LE doc said my measurements hadn't changed but because I reported finger swelling in-flight he was diagnosing me as Stage 0 LE anyway, in order for Medicare to pay for PT (and instruction in home care, especially exercises and manual lymphatic drainage self-massage). I had one "flare" early on when taking a rapid elevator to a rooftop restaurant in a skyscraper, so I wear compression when we plan for such an occasion. I can predict a storm when my arm begins to feel "full" and my ring gets tight (it normally falls off). I have had no more flares, but don compression at the gym before a strength/resistance workouts or using the rowing machine, as well as before long flights and if I am gardening or going to be outdoors in hot weather for a protracted time. So far, so good, 2 yrs. in.

      6 months ago
    • ChicagoSandy's Avatar

      Oh, and I had "only" 4 nodes removed.

      6 months ago
    • Madolyn's Avatar

      For 15 yrs. I had no problems, except for lovely flaps under each arm, leftover from Surgery.
      But, one cold, rainy day I had a routine checkup with my Oncologist. I was wearing a sweatshirt under my cute red raincoat and it was very, very tight on my underarm. By the time I reached the office my arm really painful. They took one look at my arm (it was beet red, swollen, hot and so painful), rushed me into a wheel chair and literally ran me to the hospital that was just across the parking lot. I was in the hospital for 4 days while they tried to figure out what was going on. I had all kinds of antibiotics and test after test and Xrays, they did not know the cause. My arm returned to normal and I was released. After that, I had several recurrences, my family Doctor treated each one with antibiotics. He also told me to get rid of that red raincoat! I began researching on-line,and thought it could be caused by fluid build up in my underarm. I talked to my Oncologist about 6 mo. later, and she told me about a Lymphedema Therapist. That was the best thing that happened, she immediately knew that was the problem because I without lymphnodes there was no place for fluid to go. She showed me easy exercises to do at home, that has been lifechanging. She wanted me to order custom compression sleeves for each arm to wear everyday, but they were too expensive. And, I felt I didn't need them except occasionally. I did order sleeves from an on-line company, much cheaper. As long as I do my easy exercises every day or so, I have not had another episode.
      My real question is "Why every Breast Cancer Surgery Survivor isn't given information on Lympedema?" This should be a part of every recovery plan. Maybe WE should make it happen!

      6 months ago
    • Jesse0218's Avatar

      I only had 5 nodes removed almost 3 years ago. Wasn't long before I got some Lymphedema on the right side of my chest. Not a big deal.
      I got Trigger Thumb in my right thumb. The orthopedist wanted to inject my thumb. I told him I couldn't do it. He looked at my arm and said he didn't see any Lymphedema but he didn't do it. I talked to my oncologist about getting my thumb injected when I saw her. She looked at my arm and chest and said she didn't see any reason why I couldn't try it.
      I got my thumb injected. It didn't help my thumb at all but the next day I developed Lymphedema in my arm from it. I ended up having surgery on my thumb, which was like a miracle cure and fortunately, it did not make my LE any worse than it already was.
      The LE therapists in my area don't take my insurance so I'm kind of stuck. My oncologist really tried to find someway to help me but she practices in 3 states and I can only go in PA. Out of luck unless I can change my insurance and go out of state.
      I got sleeves but they're tight. The band around the top makes me break out and itch. At the end of the day, I have a complete band with the pattern on my arm that's red and itchy. So, I gave it up.

      6 months ago
    • tracyt's Avatar

      I've had it for five years. After the first surgery I thought it was bad but when the cancer came back with a vengeance, I had to have mutiple surgeries and it's triple times worse. My insurance even paid 8,000 bucks for me to get a machine but after the last surgery it's been XXX. I feel like the only way i'll get relief is if they remove the entire left side of my upper body. I have fibromyalgia so I hurt quite a bit. The doctors always ask the same question......"Are you feeling pain today?"
      Me: Yes!! Doctor: Where??
      Me: (Yelling but smiling) MY ENTIRE SKELETON HURTS!!

      6 months ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy

    Read and answer more breast cancer questions.  Also, don't forget to check out our Breast Cancer page.