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    Madolyn asked a questionBreast Cancer

    Anyone dealing with Lympedema?

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    • Madolyn's Avatar
      Madolyn

      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!

      5 months ago
    • Jesse0218's Avatar
      Jesse0218

      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.

      5 months ago
    • tracyt's Avatar
      tracyt

      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!!

      5 months ago
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