GRRRRRRRRR I HATE LE..........
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It is definitely possible to have truncal LE,, I got it. I've never had a particular lump,, more of a feeling of heaviness, fullness and pressure. If your lump was due to LE,, the rubbing could have moved the fluid. I can't believe no one wants to give you a referral to a LE therapist! That totally sucks. Seems like since you had an unknown lump,,, that would have caused some concern after the imaging proved to be negative. Maybe try telling them you want a referral for some preventive exercises???0 -
They are redoing the imaging on Friday, The swelling I have is barely noticeable. It's just very painful. I'm discovering in the aftermath that none of these doctors seem to get LE. I swear they have no idea what it is or how hard it is to live with. I've asked all of them for a referral and they all promised me one but none of them have followed through. One of them went as far as to write me a prescription for the sleeve, but when I went to get fitted it didn't include the glove.
Since it was my thumb that was noticeably swollen I was again unimpressed. I trust all of them with my cancer treatments but as far as I'm concerned none of them seem very educated in LE. I wish it had occurred to me earlier that that is what it might be. I've been kinda panicked about a recurrence since I couldn't find another explanation. I'll mention it again on Friday if the imaging comes up negative.0 -
I would definitely mention it again. You seem to have mastered self-care which is great,, but it never hurts to get an eval from a therapist,, and you just need the one,, and then you're a patient. If you don't need active therapy, have a visit once or twice a year to "check in" and stay active with the therapist. It's very worrisome that your thumb was swollen and they were like,, yeah,, so??And you are correct,, most of them have no idea how to deal with it,, or for some,, even how to diagnose it.
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when you do your own manual lymph drainage you need to use soft light strokes..my therapist said massaging too hard can make the LE we worse. You can start to look for a LE therapist through PT's first..they also need to be certified and you can find them on the web
Good luck and glad yours is manageable
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Here is a bit on MLD:
http://www.stepup-speakout.org/manual_lymphatic_dr...
Also the emergency and reducing risk links
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GmaFoley, the lymphadiva people included a catalog with their shipment to me. It turns out, they have them in a short size. I never saw that on the web page. Mine is slightly too long for my arm (but usable), so I ordered 2 short ones. Let me know if you want to know the length of the short ones. Maybe that would work for you too.
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Sure - My length of my arms is 16 - their regular ones are way too long.
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Gma, the measurements are in centimeters, but here is how they compare: regular is 43-56 cm and short is 37-44 cm. I hope they work for you. They make it much more pleasant.
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my usual grrrrrrr....... Comments on my Lymphedivas sleeves. I was hiking at Mt. Rainier and three hikers commented on them. When I told one lady that I had them in different patterns, she said, "fun!" I had to say "not fun," even though I know she didn't know any better. I sure wish I could rip them off sometimes. Maybe that's one reason I like working out in the pool so much. I don't have to wear them there! Plus it's good for lymph. Rant over.
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I'm sorry Jeannie. I haven't felt that way ... yet. One lady where I work suggested they all wear one. They get such a kick out of it. Of course, I was very excited to get them. Oh, I dreaded getting LE. I truly did. For 2 years I was fortunate, and I became a little less uptight about every little cut or bug bite I might get on my right arm. Still, I would not permit any blood draws or bp cuffs. Whenever I considered acupuncture it jumped to mind right away that I would not let them use my right arm. However, I have the LE now. As soon as I suspected (well, I knew) that the cancer was back and had spread, I started shopping for scarves and sleeves. My arm was already swelling into elephant arm. If I was going to have to do this, I was going to make it as unpleasant as possible. Anyway, everyone knew I was excited about the sleeve. They saw me trying to work with the wrap. It was nearly impossible. Also, people at church commented on it and how it looked like lace. I don't know if anyone but I called it fun (or any version of the word). They may have. I was so tickled with it I didn't notice. I only notice that "oh my god I'm sorry you are going to die soon" look. That's the one I don't like -- even when I'm saying that crap to myself.
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It will be interesting to see what the larger study shows. And how many acupuncturists are trained to treat cancer patients??
Dunesleeper, I wish I had the exact comforting words for you. I'm glad you like your sleeve, at least. I'm meeting up with 9 other bco gals this weekend for the first time so I am bracing myself for questions, comments. I won't mind talking about it with them, I don't think. One other lady has LE. I just got back from walking my dog and realized I forgot all about LE and forgot to put on my sleeves! I'll savor that moment.
Have a good day, everybody.
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It will be interesting to see a larger study. Under the comment section, they gave a phone number you can call to see if there is a cancer-trained acupuncturist in your area. Might be worth a call.0 -
Have a great time Jeannie!
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Jeannie, do your sleeves have the "diamond" top? My first one does, but these next 2 don't. I'm wondering if they stay up well without that elasticy kind of top.
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My acupuncturist worked around the bad quadrant, but at one point I gave her permission to go over to it. So far, if anything, it has helped the pain and no reaction. We do extra sterilization on the quadrant and make sure the pricks don't get infected. She verbally asks me - "you SURE you want to do this. You are willing to take that risk?" When the pain is severe and I have trouble breathing... yes I am willing... I know I'm taking undue chances, but to be without pain for a few days, seems worth it at times.
BTW - speaking of my breast pain - i have figured it out - Acupuncturist gets rid of the pain, but soon as I get active it comes back. The movement of my large breasts are what is triggering the pain. [I had my breast size measured out of curiosity (the pain is so bad where the bra rides, I can't wear one). Found out I measure to a 44F/G - Holy cow no wonder my neck and shoulders are in so much pain.] I am looking into a reduction - I guess for insurance to pay for it, they need to take 500ccs of tissue. The conversion says I have 2060cc's of volume - don't think the 500cc is going to be a problem.. I see the plastic surgeon next month for a consult..
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Wow Gma! I had not noticed you were so endowed. LOL The reduction sounds like it will be a huge relief.
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Let's just see how off my calculations are when I see the PS
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Yes, let's just see.
I am wearing my new blue lymphediva sleeve without the diva diamond band and so far it is staying up fine. I even went to the playground with my great-nephew. No problem and very comfortable.
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oh Gma,, I hope that the insurance will pay for it. I would think you would have a big reduction in your pain with a reduction in size. **hoping**0 -
GMA I will have to follow your story closely. I have started having issues hurting too. I really think it's from the heavy boob. I was thinking this week...I am ready to have a reduction or do I just want to have it removed so I could go boobless if I wanted to. I am a 42 DDD. Bra never stays in place and foob likes to hang out on the other side...just so glad nobody else can see what I can under my shirt. lol Wish you the best with your PS.
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LOL Kitty! I know the feeling.
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GMA, I'm rooting for you! You have been through so much.
Dune, I apparently am allergic to the "diamond band." I am using Juzo glue which works quite well.
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Thanks Jeannie. If these fall down that will come in handy. So far, so good!
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grrrrrr.I dont want to practice wrapping but just got to buckle down and do it. This week I had a gentle reminder as I came home and my dog found my wraps and spread them all over the place. Would have loved to had a video of this! She particulary liked the finger gauze. Probably had some nice smell on it like peanut butter!
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My big question! Could LE cause parasternal and pectoral node enlargement? I really believe that it is somehow all connected. I can't seem to find a single article that would support this theory. The original nodule I found was joined by 3 more and then some appeared in my pectoral area also. Since realizing I had a very mild build up of fluid in the former breast I've been diligent about my lymph massage and they are starting to get smaller. 1 of them is no longer palatable. I'm having a biopsy done to rule out cancer to these nodes but the pain I was having has completely disappeared also. I guess it's a question of whether the enlarged node caused the swelling or the swelling caused the enlarged the nodes? Why is there so little information on LE!!!!
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For me, it was the return of the cancer that enlarged and inflamed my clavicular nodes. Some smaller nodes became easily palpable on my pectoral muscle. I think, as a result of that, the lymph from my arm could not move properly and so my arm swelled big time. Best of luck on that biopsy. I hope your nodes were just dealing with a little infection.
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Dizzy - I have swell in my sternal and clavicle areas..
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My grrrr for today. I had an oncology appointment Wed. and asked for a referral back to our Lymphedema Clinic. They called today to tell me I am on the waiting list. They are currently with Therapist but have two who are working part time. GRRRRRR It's a week of GRRRR's
I had to also see my surgeon about a nodule in my scar tissue. I am having office surgery to remove it Tuesday. Any advice on keeping the swelling under control? He will have to cut around the scar tissue to get it and said healing would take longer than normal since I had radiation. He doesn't think it's cancer but wants it out due to history. So we wait and worry till it's out and we get the results.
I also haven't been feeling well for a while. Turns out I had a UTI so they called in meds for that today. Gee can I say bad week....grrrrrrrrr I found some ice cream in the freezer..passing black cherry ice cream around for all.
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Loving that black cherry ice cream!!!!
Here's to a better week.
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Kitty - Same thing happened to me 2 years ago. It ended up being dead tissue from radiation. As far as the LE goes, I find if I am real diligent with sleeves and doing my MLD the week before the surgery, and drink lots of water - the swell subsided after 2 weeks. I went back to the LE therapist after I healed from the surgery for a month and it was back in control...
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