• Does anyone have problems with their lymphedema diagnoses and treatment plan?

    Asked by VickieK811 on Wednesday, January 4, 2017

    Does anyone have problems with their lymphedema diagnoses and treatment plan?

    I had spinal surgery in November which triggered my lymphedema and resulted in cellulitis needing antibiotics. This is my 4-5th acute lymphedema reaction, and definitely the worst. I have PT and OT 4xweek. OT has ordered home therapy with the flexi touch and it is recommended I use it 1-hour per zone (3 zones) 2 xday, plus continue in-clinic PT and OT. I need to go back to work on 1/30, currently on short term disability. I feel very down about all the therapy needed to control the lymphedema. Sometimes I wish I made different decisions about my cancer treatment. Has anyone had similar experiences? Am I unrealistic and unreasonable about my feelings?

    6 Answers from the Community

    6 answers
    • MelanieIIB's Avatar
      MelanieIIB

      I definitely understand your frustration with lymphedema. I was diagnosed with it right after my first mastectomy 4 years ago. Where is your lymphedema located (i.e. hand, arm, side, etc.) I have lymphedema in my hand, arm and side. I have had cellulitis twice. It is extremely important that you get your lymphedema under control early on which is probably why they are suggesting such a rigorous treatment plan. I assume you are seeing a certified lymphedema therapist, not just a regular physical therapist? It is very important that your therapist be a certified lymphedema therapist.

      I assume that you understand with lymphedema if the lymph fluid stays in the affected area and is not moved out, over time it can turn to fat and will not be able to be removed. I have an area on my upper arm that has become like this despite lymphedema therapy. There were some things I wish would have been done differently in my treatment early on. One thing is that instead of being fitted with a custom compression sleeve, I was given one ready made which didn't control my lymphedema as it should have which I believe has contributed to the problem area on my arm. Also I was not fitted for a compression glove right away which should have been done even though I didn't have signs of lymphedema in my hand when first diagnosed with it. I was also told to wear my sleeve when doing anything repetitious. In hind sight, I should have been told to wear it in the day time no matter what I was doing. I now have to have something on my arm 24/7. Do you have custom compression garments?

      I have a flexitouch that I use one time a day for an hour. It is very possible that your treatment will be reduced to using the flexitouch once a day for an hour once your lymphedema gets under control and remains stable.

      Unfortunately for us, lymphedema is an everyday, life-long problem. I have heard of people who have had successful lymph node transfer surgery. There are also some surgeons who are doing other types of surgeries for lymphedema and are having more and more success with them. Perhaps in the very near future this could be an option for you.

      Please let me know how you are doing and don't hesitate to ask me any questions or make comments. Blessings to you! Hang in there!!

      almost 3 years ago
    • Jesse0218's Avatar
      Jesse0218

      I'm sorry to hear you're having such a problem with Lymphedema. I hope it gets better for you in the near future!
      I was told by a nurse that anybody with any type of surgery can get Lymphedema, it's not just those of us who have had lymph nodes removed.
      I'm having a problem with it too, but nowhere near as serious as yours is.
      I was told I had Lymphedema about 1 1/2 years ago and it was explained to me how serious it can be, how it could spread to my arm, mine was more in my chest area, around the side, how I can land in the hospital with it, etc.
      Long story short, mine seemed to have cleared up, although I was told once you have it, you have it for life. Maybe it can clear up and come back, I don't know. I'm pretty confused about Lymphedema myself right now.
      I did see a Lymphedema therapist for awhile last year for that and a frozen shoulder on the same side from radiation. Then my insurance changed and I had to stop going. Nobody else who treats Lymphedema around here accepts my insurance. It's a small base plan with Medicare.
      I got Trigger Thumb in my thumb on that side. The orthopedist wanted to inject it. I told him I was told NO needles or bp on my right side because of Lymphedema. He looked at my arms and said they look the same size to him, but ask my oncologist. I forgot to ask before I went back but promised I would before my next appt. I did ask my oncologist looked over me and said I could get my thumb injected because she didn't see any Lymphedema anywhere. This makes me think maybe it comes and goes at times.
      I got my thumb injected and the next day, my forearm puffed up with Lymphedema. It's still puffy. I'm trying to get an arm sleeve for it but the company that's contracted with the insurance co wants me to do their work for them. So we're kind of going in circles.
      Meanwhile, I'm scheduled for more reconstructive surgery in 2 weeks. The plastic surgeon said he didn't see any Lymphedema when I saw him in the beginning of Dec, which was when it looked like I didn't have it anymore. I don't know if that will change things or not with how he does the surgery.
      I just wish the company that's contracted with my insurance co would get it together and do what they need to do to get me a couple sleeves since I now have it in my arm too!

      almost 3 years ago
    • MelanieIIB's Avatar
      MelanieIIB

      Jesse0218, sorry about your arm. I would take a picture of it and make sure that all the medical people and doctors who saw you and said your arm is not swollen sees how swollen it became after the injection into your thumb. They need to know about it and seeing evidence will help them understand that they have to be careful when treating you because you DO have lymphedema. You would think doctors were more educated on the subject of lymphedema, but they are not. Make sure your plastic surgeon sees a picture as well.

      It is a misconception among even medical people that just because your limb is not huge, you don't have to worry about your lymphedema. It surprises me that your oncologist is so uneducated about lymphedema. It can come and go and there is a chance that the affected area can stay symptomatic. Lymphedema can also be progressive, meaning other areas on the affected side can swell. As an example, when I was first diagnosed with lymphedema, my upper arm and my side were affected. The lymphedema therapist had me get a sleeve (not custom) and told me any time I do anything repetitious, to wear the sleeve. We were moving and I was packing a lot of boxes. I was wearing my sleeve as instructed and my hand started swelling. I went back to the lymphedema therapist and she said it was now in my hand. She told me I needed a compression glove. I got one (again, not custom) and was now told to wear the glove and sleeve when doing any thing repetitious. Then my sister was moving and I helped her pack, wearing my glove and sleeve as I was supposed to. My hand got swollen again and I now have swelling that comes and goes every day in my thumb, fingers, and other parts of my hand in addition to the constant swelling in my upper arm and occasional swelling in my forearm and my side and sometimes these areas swell and it is not because I have done anything repetitious.

      Here are two helpful sites where you can learn more about lymphedema: www.lymphnet.org and lymphnotes.com.

      Can you see a lymphedema therapist again, especially now while your arm is swollen? The therapist should be able to help you get a sleeve with your insurance co. and also it would be helpful to have your doctors have documentation from a lymphedema therapist that you do have lymphedema. Also, it is important that you get the correct size sleeve for you. A lymphedema therapist needs to measure you and advise you what to get, even if not custom. If still having trouble getting a sleeve, is there a nurse navigator, patient advocate or anything like that where you could get some help? If you don't know, call and ask at your oncologist's office, surgeon's office, etc. If they don't know, ask them who may know. You could also call your local American Cancer Society to see if they know of any sources of help for you.

      Blessings! Keep us updated.

      almost 3 years ago
    • Jesse0218's Avatar
      Jesse0218

      Thank you, MelanieIIB! Your info is very helpful and I appreciate it. You've given me some help with your explanation of things.
      I'd been wondering whether it could come and go. Now, I know it can.
      I've never had it in my arm before now either. I had it in my chest and around my side. The NP saw it first and she explained it pretty well to me at the time. But didn't say it comes and goes - at least not that I remember. I do remember her telling me it could spread to my arm. That I can get cellulitis that can land you in the hospital, etc.
      I guess it was in one of those not active stages and spread to my forearm.
      The reason I'm having so much trouble is because of my insurance. The insurance I have has a very narrow base. That's why I had to stop seeing the Lymphedema Therapist I was seeing last year. We are friends on FB and she saw one of my posts and said we'd talk after the holidays. Maybe I should remind her now that things are settling down some.
      I have a health coach through my insurance company who is really helping me find resources too.
      I'd gotten a check from Cancer Care to help with Lymphedema related costs but when they said I didn't have it, I sent it back. My health coach said call them and see if they'll reissue the check. It's being sent back out next Friday.
      I have a very limited income, just my Soc Sec and don't have a lot of savings left either.
      I bookmarked the 2 sites you gave me so I can really read them when I'm not so tired.
      Thank you again for your help!!! I appreciate the information.

      almost 3 years ago
    • MLT's Avatar
      MLT

      VickieK811, Jesse0218, I hope you were given exercises and massage techniques to use. I was also taught how to do the chevron wrap when my arm and hand were huge. There is also a custom made nighttime sleeve that helps a lot. Mine is made ny Tribute. I have noticed that treatment is so much better at a breast center than the one local lymphedema therapist . Yes, all doctors need more education in this area. Some are starting to put sleeves on patients right after surgery. I had extensive reconstruction 4 years after lymphedema started. I didn't have any problems at that time. Mine flairs up occasionally, but is usually under control. Hoping all can get the sleeves and treatments needed. Hugs!

      almost 3 years ago
    • MelanieIIB's Avatar
      MelanieIIB

      Jesse0218, thank you for your kind words. So glad the check is going to be reissued to you and that you have some resources such as your health coach. As for cellulitis, both times I had it, it was caught early so I only needed antibiotics and did not have to go to the hospital. It is important to know the signs so that you can get to a doctor right away. Of course as with everything else, everyone is different, but my first indicator of cellulitis was that I had red bumps on my wrist and my wrist felt warm/hot to touch it. My arm was also achy. I called my oncologist's office and the NP made time to see me that day. When you have time, it may be helpful to do a websearch for signs of cellulitis in lymphedema. You don't have to have all of the symptoms to have cellulitis or the beginnings of it. I had some of the symptoms, but I did not have fever. Here is a helpful site: http://www.breastcancer.org/treatment/lymphedema/infection and another article: http://www.lymphnotes.com/article.php/id/557/

      almost 3 years ago

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