New Breast LE Thread!
Comments
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Joining the thread.
RADs brought on my Breast LE. Started LE PT one month later. Pain and swelling prior to PT was awful. After 5 months of twice weekly PT appts, daily compression, daily MLD massage, and range of motion stretches, my pain and swelling are manageable. I now see my PT once a month. Wear compression, Komprex, or my Swell Spot daily, plus do my MLD every other day. It's been a 'journey' to be sure. Le Sigh. In the beginning I didn't think I'd ever be able to wear a "normal" bra ever again due to the pain, now, every once in awhile if I'm going out, I can. That's huge for me.
MelGirl - I don't have arm issues, so I'm not familiar with that aspect, but I can say that when my Breast LE was more advanced the burning, swelling pain was intense. I was conscious of it 24/7. Every single time I moved. Uggh. I was also referred to Acupuncture to help with my LE SEs and after 8 weekly visits I can now maintain the benefit with bi-weekly or monthly appts. I had some immediate relief from the first visit, with each visit the relief lasted a little bit longer.
Is there a reason your PT doesn't start until Aug?
That seems a long ways away when you are in pain. I hope once your therapy starts you will find some relief.
This was/is the compression bra I've lived in since my LX/SLNB in Aug 2018.
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Hi Spoonie! I was diagnosed with breast truncal and arm lymphedema in March. I had symptoms of it after my very first radiation treatment. That being said, had a huge hematoma that cost a lot of irritation in my breast and I think that was the beginning of it. My favorite tools are my flexitouch and my juzo soft print sleeve and gauntlet. I love the prints of the lymphedivas, but those sleeves are very uncomfortable on me. lymphedema in my arm is pretty well control right now, but the lymphedema in my trunk and breast is not.
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spoonie, that bra looks pretty good. Thx for that. I’m not starting the therapy sooner because I am on summer vacation with my kids right now and my PT is also away. She wants me to do 5 days a week for 2 weeks then 3 days the third week. I did PT previously but it was more for scar tissue reduction. It was a different PT.
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Hi,
I, too, have been diagnosed with truncal, chest & arm lymphedema. I now have a Flexitouch pump, and am trying to find an economical version of a compression sleeve to wear. My lymphedema PT said I only need to wear it when I am gardening, exercising, fishing, engaging in repetitive motion, etc. I need something that has 20-30 mmHg compression. Have any of you tried an athletic version of the compression sleeves? What about gauntlets...as I hate the glove. I use my hands way too much to keep them clean for long. Thanks!
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I just found this thread and even though most of the posts are older, I found it to be very helpful and hoping it can be resurrected.
Melgirl, have you started your LE therapy yet? If so, have you had any noticeable improvement?
I am concerned that I may have some breast LE too, so I scheduled a consult with an LE-certified physical therapist, but my appointment isn't for a few weeks yet. In the meantime, I will be having my first post-treatment mammogram and a follow-up with my surgeon this week, so I'm worried about the mammogram making things worse, but I'm also glad for the chance to have the surgeon look at things.
Part of my issue is that I have a hematoma or seroma from surgery that never went down, even after radiation. I'm not sure if the overall swelling in the breast is from that and if having it drained will help the entire breast return to whatever its new normal size should be, or if this actually is lymphedema. I read that patients who develop a hematoma or seroma are at a greater risk of LE, hence my concern. Other than the swelling that sometimes appears worse after wearing certain bras and the indentations I sometimes get from certain bras, I have no other symptoms such as the feeling of fullness that other posters here have noted. I did have episodes of burning and stinging, but I associate those with rads and I haven't had any since early July. I have not noticed any LE symptoms anywhere else.
I would be very interested to know if anyone else had general overall swelling of the breast that improved after having a hematoma or seroma drained. Or, if this is true lymphedema, could having the hematoma drained actually make LE worse?
Interestingly, when I had my recent follow-up with my RO, he agreed there seemed to be some general swelling in my breast in addition to the obvious lump from the hematoma but theorized that because of where my lumpectomy scar and the hematoma are, that fluid is being blocked from draining out of the breast but said he did not think it is actually lymphedema. But to me that sounded just like a description of what lymphedema is. Hmmm... Is it possible that the swelling at this point, 6 months out of surgery, is still "normal" post-surgical swelling? The RO said that post-radiation swelling would be gone by now and felt it was related to the surgery. I am really hoping this is not lymphedema!
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Super52 -> How did your LE PT appt go? Any news? Hope the swelling has improved or you now have a plan of attack from PT. Fingers crossed for you. Just an fyi, the swelling I experienced from RADs lasted a good few months, even discounting my Breast LE. So I guess it does happen, just not sure how often. I'm a rare bird usually.
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I'm not sure if I have breast lymphedema or if I have a seroma? Dr drained about 200 cc of fluid two weeks ago, but it is now swollen again and is visibly larger than the other one again. He requested that I wait a month before coming back if it filled up again.
How do I figure out which it is?What is the best bra or other compression mechanism?
Thanks!
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Dorothy, so sorry that you have swelling again. I appreciate your updated post because I am still deciding if having my seroma drained is worth it or not. Your question is the same one I have: how do I know for sure if it is LE or just post-radiation swelling or just extra fluid that is trapped by the seroma. I can't say that my breast is any firmer or harder than the other one, and I think (at least I hope) that that's a good sign.
Spoonie, thanks for the info about your post-rads swelling. My swelling hasn't really gone down, but I also haven't noticed my bra making such deep indentations, and the skin dimpling I was getting at the bottom of my breast by the end of the day is pretty much gone. Overall, however, it is still the same swollen size which makes it slightly rounder and fuller than the other side. I don't dare wear an underwire bra because I'm afraid of what it will do. I hate that my wardrobe choices have to revolve around what bras I can and cannot wear.
My appointment with the LE therapist was a little bit of a letdown. She did give me some good exercises that helped with range of motion in my shoulder, but she didn't seem to be that experienced with breast LE. She did, however, state that she thought my swelling would go down if I have my seroma drained. I'm still debating on that, though, because the surgeon warned me that the breast can still shrink up quite a bit even months after radiation and that because of where my tumors were, I could end up with more of a divot than if I let it absorb slowly and naturally over time. I had two areas of cancer, but they were close together so they were removed as one larger area. So, I guess I need to decide whether I want a breast that is a little swollen and slightly larger than the other one, or if I want a breast that is shrunken and caved in and smaller than the other one. Too bad I don't like either of those options lol! Since I have noticed some improvement in at least the skin, I will give it a little more time to see if the swelling starts to go down. If not, I think I'll finally make an appointment to have the seroma drained and see if that helps.
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Sad to see this thread roll on with new additions. I managed to go through my entire treatment with what I now know to have been breast LE since the date of my surgery (snb but I had 8 sentinel nodes). No one ever questioned why the breast they took a scoop of flesh out of was bigger than the other, even though I got a three-bullet-point list (verbal only: don't carry anything heavy, don't get a bug bite, moisturize constantly forever) at the end of rads as my "LE teaching" about protecting my arm. Finally it was my dermatologist, when I said what's with this skin around my areola getting red & stiff, who identified it as LE. When I went to my medonc for a therapist referral, his only comment was "oh, yeah, that happens." And that ended his involvement in the issue—it's never been mentioned or followed up on by either of my medoncs since. Not their problem. At least my gp is willing to prescribe oral antibiotics so if I get an infection while out wilderness camping, I can treat it promptly.
I do twice-daily mdt, the routine modified over time by my therapists from the very complex one that involved everything from groin to head plus exercises with weights to a simpler one that draws to the opposite side and down to the same-side groin and does a better job of draining AND doesn't hurt my rotator cuffs as badly. I do twice-weekly free weight workouts (Strong Women Strong Bones) to keep my strength up and inflammation down. I wear more clothes to garden in than most nuclear reactor plant workers do, I think. So far, the LE hasn't jumped to my arm and I hope to keep it that way.
I sleep in a tube top with full-breast quilted pad and in the daytimes wear a tight uniboob sports bra with an L-shaped quilty plus an extra little cushion that goes in my cleavage to hold the L against the inside and bottom of my breast. I hate the bra band but live very far away from good shopping and apparently am the only one in the world with such odd proportions (I looked into one bra rec by my therapist called the "full metal jacket" and when so tight I couldn't get a deep breath, still could fit a fist in the cup with each breast). I had to make my own quilted pads from foam chips and linen or silk just because I need more pad running out under my armpit to reach the breast tissue and swelling out there. I could probably get them custom made for hundreds of dollars apiece not covered by medicare, but my home-tailored versions work adequately and don't look quite so much as though they should come with a complimentary walker or something.
My current challenge is dealing with the cold weather. I just hate lying in a cold room, naked, to do my drainage. It's even worse when camping: at 40 degrees, it's just painful and yet it's hard to get the pressure/moves I need under a sleeping bag (not to mention getting moisturizing cream, which I need for traction, all over things). Of course, the medical answer is to quit going camping and to heat my house to naked-warm. Excuse me, but I'll be over here burning the medical answer in effigy.
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I've never been diagnosed with breast lymphedema. My breast had a small lump starting after lumpectomy. Then shortly later, my breast got more swollen. Surgeon looked at it and just said compression.
I think it got bigger during radiation.
Two months after the end of radiation, I went back to the surgeon and he took 200 ccs (3/4 cup) of liquid from my breast and it was then the same size as the other one.
It grew again starting several days later and by two weeks after draining, it is now again larger than the other breast.
Not sure if seroma or lymphedema.
I'm curious who sent you to lymphedema pt ? I've been sleeping in my bra, but that doesn't give that much compression.
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Dorothy - my RO was the only one who was concerned and responsive. Of course LE can be caused by surgery or radiation - and can come on even 20 years down the road.
Sounds like you have two problems going on - fluid on the breast and maybe LE.
I don't see that anyone has posted this wonderful site on this thread. Much of the input was from BCO members. Great information.
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thanks!
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Hi Dorothy and everyone. I was Dx last summer by the NP of my Oncologist . I had been told that my red, swollen, warm to touch breast would improve 4-6 weeks after rads . That didn't happen and I asked the NP about it. She immediately examined me and dx breast LE She referred me to a certified Lymphedema therapist who said a telltale sign of this is the " orange peel " like skin because the pores are so obvious from the swelling.. It has a french name that I don't recall. If you are not getting a definitive answer, keep pursuing it . Maybe you could get referred to a LANA certified therapist who knows more about LE than most providers. I was lucky to have a quick DX and treatment. I do the manual exercises 2x daily, exercise by walking daily, and some arm exercises to prevent LE in my arm,and drink plenty of water, I wear a compression or sports bra day and night. The sports bra that works pretty well for me is by Anita and it says "Anita Active" on the label. I also wear the wearease bra at night as it is comfortable and not too hot.. I also have some compression bras by Jodee which look more like a regular bra and look better under tops and lightweight siummer clothes. I did wear the Bellize for awhile but now only need it for flying or flareups ( which I haven't had lately) I am always on the lookout for ideas from others on managing LE . I also recommend the Step Up, Speak out site as it is full of information.
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