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Breast lymphadema (what does it feel like)?

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mama1416
mama1416 Member Posts: 7
edited April 2023 in Lymphedema

I am newly diagnosed with breast and arm lymphadema. My symptoms are a tightness across my breast/chest and upper arm. Swelling and aches in both my arm and chest. My breast almost feels like when you put a wet washcloth on it. Sounds weird, but it’s the only way to describe it! Does anyone else experience this? I’m seeing a certified lymphadema PT now twice a week. She’s using cold laser therapy to break up scar tissue and fat necrosis. I haven’t read much about it on this site. I’ll keep you all posted on my experience with it

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  • serendipity09
    serendipity09 Member Posts: 769
    edited April 2023
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    mama1416 - it's the perfect way to explain it, except mine stretches into my underarm due to lymph node removal. BS and PS want me to start PT again, but,I honestly don't want to unless a different approach is used. Had a US yesterday for a very hard and painful area in the upper quadrant of my right "breast" which turned out to be fat necrosis from BMX, and radiation and most recently, DIEP. I'm curious about cold laser therapy. Will have to ask about it as I refuse to waste another two years of going in two times per week for no relief. Please keep us posted.

  • maggie15
    maggie15 Member Posts: 1,075
    edited April 2023
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    mama1416, Cold laser therapy is a type of photobiomodulation. My husband ended up using infrared / far infrared light therapy on his arm for severe lymphedema after elbow surgery four years ago. Nothing had worked so we suggested what would be used on a swollen horse leg, ESWT (sound waves) or far infrared light. The doctor nixed the ESWT since it would heat the metal in his arm but gave permission to try photobiomodulation. The surgeon's fellow had seen infrared light therapy used for brain injuries during a neuro rotation so he figured it would be safe. It worked quickly and effectively; my husband was able to begin to move the joints in his arm to complete the 18 months of physical therapy it took to get his range of motion back. The cold laser is stronger but needs to be administered by a trained professional.

    I have breast LE caused by radiation and exacerbated by a thermal burn. My breast surgeon had planned to reduce my non-cancer breast since there was a cup size difference after surgery but diagnosed me with LE when she saw the lumpectomy side was a bit bigger than the untouched breast. My burn surgeon used a regular laser on my hand and face for nerve pain but told me lasers could not be used on the damage caused by the combination of radiation and burn. I only do light lymphatic drainage massage because the breast is painful to touch. It feels full and slightly heavy so your analogy of the wet washcloth is a good one.

    I hope you have good results from the cold laser therapy. Photobiomodulation is considered to be a new treatment for people but has been successfully used by veterinarians for a while.

  • maggie15
    maggie15 Member Posts: 1,075
    edited April 2023
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    serendipity09, Some chiropractors use cold laser therapy to reduce inflammation and pain. If you can't find an LE therapist who does it consulting a chiropractor who owns a cold laser might be an option.

  • serendipity09
    serendipity09 Member Posts: 769
    edited April 2023
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    Thank you Maggie15!

  • sarahmaude
    sarahmaude Member Posts: 338
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    I noticed a lot of discussion with this topic over 5 years ago, but a lot of the links there are broken and these late stage effects don't seem to get the attention they did in the past. I

    I'm newly experiencing this lovely post treatment effect. After 17 months of being happy with my left post lumpectomy breast which was about a cup size smaller than my right untreated breast, my left breast is now at least a cup size larger than the right breast. And it's heavy and sore.

    I've got a PT appointment with a lymphedema specialist on the 6th (a week and a half away). I also notice that my left shoulder's range of motion is reduced.

    Has anyone else been pretty frustrated with even getting a diagnosis and attention for something that isn't cancer? I called my BSO and talked to the nurse who I felt like almost dismissed my concern telling me that the radiation I had was a slow cooker and still affecting my breast. Off handedly she mentioned I might be able to get massage therapy to break up the swelling/scar tissue (not sure of the phrasing…but she didn't say anything related to lymph). I had a screening mammogram and they wanted me to do that before following up. At the mammogram this week, the ultrasonographer was dismissive of my concerns telling me how awful radiation is and, "that is why we all get BMX even if we have a small DCIS."

    After the mammogram and US (which of course and happily showed nothing), I walked next door to the BSO and asked them to move the appointment I had scheduled almost 3 months away earlier, and I guess the appointment slots where so booked they asked the doctor who happily said she would see me right then. She set me up for PT and assured me they would get this breast back to a tolerable size.

    The reading I've done doesn't really suggest this is radiation induced, and BSO didn't say that either. Lymph and lymphatic drainage is a very weird thing! I have watched some videos and read tutorials on self massage.

    Anyone who is further down the road with this (especially with primarily breast effects), can you help me know what to expect at the PT appointment? What should I ask or be aware of? Any recommendations for supportive bras, especially for fairly average size people with large breasts? (36DD)

  • maggie15
    maggie15 Member Posts: 1,075
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    Sarahmaude, My breast LE is radiation induced. They could tell because in addition to arm measurements whole body bioimpedance spectroscopy was done as part of a clinical trial. The RO was more focused on how he might prevent LE and could do no more than refer me to a LE therapist. She taught me drainage techniques but this didn’t make much difference in my case, probably because of the nerve pain the LE was aggravating.

    While I’m not back to normal I got some relief from an acupuncturist who used a technique developed in Japan for radiation side effects post WW2 bombing. The needles were placed in my back. The swelling is a bit better but I still need gabapentin to sleep. I wear the equivalent of an undershirt rather than a bra since in my case compression makes the nerve pain worse. In addition to compression bras there are compression tank tops and tee shirts. I hope you can find something that helps.

  • sarahmaude
    sarahmaude Member Posts: 338
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    @maggie15 thank for your answer. I hate to hear you still have pain. I hope the PT helps me but will keep acupuncture in mind if needed. I’ll check into some snug undershirts. I have a hard time finding bras that are more supportive without having straps dig into my shoulders.

    Too late for us, but it makes me wonder how much these late stage effects are considered in designing treatments for us. I do read a lot about de escalation of radiation, but know that with my luminal B tumor I wasn’t a candidate for that.

  • ratherbesailing
    ratherbesailing Member Posts: 129
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    Sarahmaude, I was diagnosed with truncal lymphedema before radiation - my arm was swollen after lumpectomy. And I've known women who develop it years after treatment, triggered by a sudden incident that put stress on the arm.

    PT should be of help to you. They will likely perform drainage massage on the affected area. As important, as Maggie said, they will teach you drainage techniques you can use at home. And you really should try to do them every day - it helps keep the swelling at a manageable level. I find doing it in the shower every day keeps me on track, and only takes a couple minutes. The other thing you might want to discuss with PT is exercises to keep the affected side strong. I don't know if your affected side is weaker than the other, but it is very common. Several years ago it was recommended that women "baby" the affected side, but newer research shows that slow and careful strengthening helps prevent further exacerbation by avoiding strain. You just don't want to over do it, or go too quickly.

    PT can also recommend lymphedema bras. The Jobst Bellise has wide straps, so might work for you. Medicare and most private insurers will cover the cost with a prescription, which your surgeon can write. I also use something called a Jovi pad under my bra when the swelling is bad.

    These are all just thoughts - your therapist will guide you for your specific situation.

    I know it's frustrating to have this crop up. You were so smart being proactive. And I'm hoping that, as in my case, it ends up somewhat annoying, but still quite manageable.

  • vlnrph
    vlnrph Member Posts: 493
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    There used to be a big LE thread on this website with tons of contributors. Looks like it’s been eliminated. This new one is certainly more compact at present however the personal experience of many has been lost. Perhaps I can stimulate my addled chemobrain & recall a few gems to post here. It’s important to get baseline measurements prior to any intervention. Always be well hydrated!

    I’ve been dealing with arm/hand/breast/truncal for over 13 years now. The comments by others above are all pertinent. Interesting that the cold laser therapy was adopted from animal medicine. I did not have radiation. The surgeon insisted on taking all my axillary nodes because the sentinel showed micromets. There was a study going on at the time which concluded that the 2nd procedure is not necessary in most cases.

    My condition developed once TC x 4 ended. Feeling less like roadkill, I did a bit of garden work, being careful by supervising our son in the heavy stuff. Nevertheless, things blew up. My therapist performs massage with lotion on the affected extremities. I religiously wore my compression sleeve & glove for months until cellulitis grew in the warm, moist environment so I quit regular use. A FlexiTouch machine has been helpful.

  • maggie15
    maggie15 Member Posts: 1,075
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    I think the name of the thread vlnrph is referring to is GRRRRRRRRRI HATE LE ………. My iPad won’t let me paste a link but you can search for it to see all the earlier posts.

  • vlnrph
    vlnrph Member Posts: 493
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    Thanks Maggie. I remember that topic but think it was just one part of a much larger group. Also, it looks like the most recent post there is from June 2023. The bigger thread frequently suggested www.stepup-speakout.org, a website that is now somewhat dated. However, since we haven’t made outstanding progress in all aspects of LE, many of those pages can be helpful in a general sense.

    I put on compression gear when we used to fly, after getting through airport security. I never wear underwires so would have soft padded cups underneath an Under Armor shirt. Styles for women back then had little cap sleeves which cut into the axilla=not good. I bought men’s medium in various colors.The silly logo was right in the middle of your chest. Looping a scarf around the neck hides the advertising.

    When considering a machine such as FlexiTouch to treat chronically swollen limbs, look for certain features. Mine, which I’ve had for a decade, does a sequence to first “empty” the affected quadrant. Then it’s programmed individually (the rep came to our house) to go one direction from fingers to armpit with light squeezing. Mine needs a full hour to run. I lie down on the sofa and watch TV while it does its thing.

  • lw422
    lw422 Member Posts: 1,410
    edited February 27
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    For anyone needing lymphedema information, here is a link to the LE section of the forum where there is a ton of information. https://community.breastcancer.org/en/categories/lymphedema- Sadly, it took me 5 minutes of searching because this ridiculous forum format doesn't have any intuitive formatting and no "forum" topic list. Many people agree and have left here, so the active LE section is a shadow of its former self. Such a shame because that was such a supportive group.

  • lw422
    lw422 Member Posts: 1,410
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    One more tip… LE is spelled lymphedema. It is the combination of "lymph" and "edema" (swelling.) Spelling it correctly will help with results for searches.

  • sarahmaude
    sarahmaude Member Posts: 338
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    I appreciate all the input! I've had two OT sessions (for some reason this treatment is done by occupational therapists here). Was surprised that I did have swelling in my arm. As mentioned above, my strength is significantly affected. I expect that the weakness on the left side is one reason I developed tennis elbow from yoga on that side.

    They've ordered a sleeve and a bra that I'm going to try. Insurance will pay for up to 6 garments, but I want to make sure that I can tolerate what they select. I'm going to ask this week if there is another bra that doesn't have a zipper in the front as work clothes aren't very well suited to the zipper tab. I also hate the monoboob look!

    The lymphatic massage is effective, and almost magical. Of course the downside it I have to do it twice a day, and the swelling always comes back. Agree that doing it in the shower is awesome. I have fibrosis in the swollen breast, so that is one reason I'm having issues there.

    They are planning on ordering a pump for me if it works.

    I wish my SO had been more attentive and instructive on the fact that even a single sentinel node and radiation creates significant risk of LE. I feel as if my risk was downplayed. I'm glad I noticed when I did as I have the potential to get back to stage 0 from stage 1.

    I think that more education to survivors on LE risk, signs, and symptoms should be offered. Also, actual screening would be helpful as I had no idea I had 8.5% swelling in my arm.

    I'll go search back on older threads for other ideas to help, but it is really very assuring to me to have experience people responding here in real time. Given the very limited number of active users now, a single thread seems to be working now. I still feel sad seeing what BCO used to be and wish the size and engagement of this community was more. But, those that are here are amazing, and I'm very grateful for what is.