Not an acceptable side effect

I agree with you. It is a monster of a secondary disease after the war of BC. My surgery was March 23 with only two nodes removed in a Sentinal node biopsy. Stage 1 , no nodes. I asked about lymphadema, just as a question in all that I was was dealing with and was told not to worry about it. Played tenniS, golf, and was very active. Ten days into radiation , I started to feel tightness in my left arm and kept asking about it. Then the swelling and pain started. I finished rads on May 18...since then I have had to go to lymph therapy 3x a week and just developed cording, which is horrible , painful, crippling and disfiguring!!!!

Being left- handed, this will change my life forever. .. No one explained it. There are no answers for it I am wearing that compression sleeve , no salt, getting lymphadema therapy , doing the exercises, Etc. it doesn't matter!!!

The surgeries seem too experimental... No one understands this by - product of breast cancer. Everyone just thinks that "we are lucky, because we caught it". Breast cancer can be beaten , but lymphadema is forever, with no cure in sight. It stinks

I am weeping as I read all your postings. I am also have been diagnosed with lymphedema. I thought being diagnosed with BC was hard enough, I was 'worried' about looking at myself in the mirror every day, seeing the BMX scars, but now I also have to live with the SE's of lymphedema too? And this will be for the rest of my life. I am incredibly sad.

Ropes end, have you looked into surgery that might fix it. I was reading a thread that talked about lymph nodes transplant. I do not know the details but someone on BCO has had success with it. Anyone else have info on this?

I agree with those of you doubting if any of the "treatments" work. I was diagnosed while in my first month of Taxol - I haven't even finished chemo yet. And I'm supposed to do radiation with this freak hand? Seriously? For a couple of months I did everything I was supposed to do - wrapping, MLD, LE exercises, exercise, salt intake, water consumption, blah blah blah blah blah blah.I got cellulitis, stopped all treatment like I'm supposed to, and I would say within 2 weeks my hand was almost back to normal. Since then I've been basically like - screw it - because doing nothing did more than all the hours spent wrapping and massaging, etc etc etc. Of COURSE during that time the insurance was giving me grief about paying for LE therapy, so my PTs don't know what caused the massive shrinkage. I went in for a check up to try to get me back in to therapy, but I had a long weekend road trip that included some alcohol. Fat hand/arm back.

I can find no correlation between my hand size and anything else I do. I had no clue when this started that I would have to deal with it FOREVER, that wearing wedding rings are out, bracelets, blah blah....I am in Paris right now and I should be happy and excited, but no, I have a fat hand from walking around all day - isn't that supposed to be good for LE? - and I didn't wear a sleeve on the flight, I full on wrapped. It didn't help a bit.

I'm trying, trying to just start doing the little 5 minute exercise series to increase lymph flow and I'm so angry I don't want to do that.

I want a proven course of action, not a bunch of baloney.

I haven't been on the LE forum in a long time, but this thread caught my eye and I wanted to pass along a word of hope with my story. Thanks to Binney and the other wonderful women on this site, I self-diagnosed my LE a year after my surgery (I too was told nothing about LE by my surgical team, and was never checked or examined for signs of LE in all my follow up visits). Fortunately, thanks to the education I found on BCO and later on Step Up Speak Out, I figured out pretty early what was going on and was able to get treatment before it progressed too far.

I've done the whole bit - compression sleeves/gauntlets, night garments, pump, unending visits to my LET, and had plenty of fights with techs and other medical professionals who insist that I'm overreacting when I won't let them use my affected arm for BP, IVs or blood draws. As we all know, you have to be your own advocate, and LE requires a lot of self-advocacy!

But two things happened a few years ago at about the same time that have made a difference. First, I finished my 5 years of Femara. I'm not sure that the Femara had anything to do directly with LE, but indirectly the joint pain and other symptoms sometimes made it hard for me to make myself exercise, and we know that exercise is good for LE. Now that I'm off of Femara, the s/e have receded and I find it much easier to be active. The second thing is that I found a massage therapist who had taken training in full-body MLD. The first time I went to her I could tell she knew what she was doing as she did the exact same MLD as my LETs had done on the affected areas, and continued that same therapy on my entire body. During that first session, she moved a lot of fluid out and I felt a big difference.

Ever since then I self-pay for a monthly 90 minute head-to-toe MLD session with her (because of course insurance doesn't pay for maintenance therapy). I think having her do a full body MLD rather than just the arm and torso stimulates my entire lymphatic system and maybe has helped it become more efficient. Of course I'm terrified that this wonderful massage therapist will retire or move on, but if/when that happens, I'll deal with it then.

Bottom line is that it seems I've managed to "push back" my LE to very early stage - to the point where I rarely have to wear my compression sleeve/gauntlet, and it's even rarer for me to have to wear my night garment. I'm always careful to take all the precautions and to monitor myself, but at this point LE is much less a part of my life than it used to be. I know I'll always have it and that I could blow up at any time, but I just wanted to let some of the newly diagnosed people know that by being vigilant and catching it as early as you can, and pushing for treatment, it may be possible to push it back a bit.

DocSR, glad to hear this! What sort of LE research are you doing? There are so many possibilities for research that would help, and so little funding for it, we'd love to know what you will be looking at.
Binney

@docSR really glad to hear that someone is doing some research. I expected a questionnaire when I was diagnosed that would pin down why I, with only 1 node removed and not over weight, developed LE. It really bothered me that there were no questions asked. I think about different things that went on in my recovery, my treatment and other aspects of my health and wonder if there isn't a common clue that could help the next generation of woman avoid LE. I hope you find it.

Good Luck!

I am right there with you ! I asked my surgeon about the possibility of having trouble with my arm after lymph node removal . He ever so casually said , " You won't have any problems ". All I have had is problems with my arm. Never found any cancer in my nodes . So disgusted . Wish I had been informed of all the side effects BEFORE my surgery !

Ropes end - I feel exactly the same. I was told I didn't need to worry about LE, my weight was fine, and only 2 nodes removed. Even after 2 seromas immediate post surgery no one told me to look for signs. I had radiation, again, doctor told me I didn't need to worry about LE. NOW I read radiation increases chances by 35% and that's with limited data - probably much higher. No doctor thinks what they do is going to put you at risk. Well, 2 months after radiation my bras weren't fitting well and after a few more weeks I just knew I had it in the breast. I called my MO, got into PT program with certified therapist, but since it is "mild" they are not keeping me long. I have yet to find the right garment I can wear for more than a couple hours before taking off and switching to another bra/compression shirt. I haven't found a great one yet and I have bought approximately 30 (many mentioned on this site) The LE keeps flaring up every few days. It's so frustrating! I just got the list of the 100 things to be careful of/what to do/what not to do and know this is going to be a full time job. I thought worrying about recurrence was bad! I have been upbeat through everything up to this but now I am just angry and frustrated.

Thanks doxie - I have been discharged from PT, no further ahead than I was before. They say it's gone down but later that day I swelled up quite a bit again. I only had 10 sessions. So frustrating. My PT told me I could communicate with her after but I was pretty much shut down after emailing a question to her a few days after treatment ended. That is so disappointing. I am plodding along, trying to find the right garments through trial and error. I hope to have a a better handle on this in the coming months. I do MLD massage daily and all my stretching exercises as well. Here's hoping!

doxie - I think I read about that on another thread. What brand is the small trampoline? Do you bounce with feet planted on trampoline or jump up and down?

Thanks for the info!

I developed very slight LE at my middle and right fingers on my surgerical side. And I learned about rebounding and started exercise with the rebounder,it went away on its own.

I jump 6-7 times a week, and I highly recommend it. I stopped wearing the compression sleeve and glove when I fly and I didn't have any trouble.

But I can't push back my cuticles on the same side, it always give me that tightness and the swelling would travel from my arm pit down towards my fingers in about a month or two (didn't keep track of it. And then it's gone.

I had 35 nodes removed

I will look into the rebounder. Mine is chest/truncal - arm isn't affected as of now. I hope bouncing works for all areas of the body.! Thanks all

Thanks for the info juneping.

I've started to get a very warm feeling internally in my arm (mostly upper arm) and am hoping my truncal isn't moving into my arm. It's intermittent but more often now. At first I thought it was from the stretching/arm exercises the therapist gave me. I've been discharged from therapy and of course it started on a Saturday. Did anyone have this prior to arm swelling? I see it as a precursor on some sites. I will call Dr tomorrow and see what they say, however they have limited knowledge with lymph edema and my therapist doesn't respond to my questions now that I've been released.

MamaOz, my oncologist did not recommend radiation because of the amount of nodes that I had taken out (not much left to radiate), but I only had one small positive node. I was told for me, the benefit was small or possibly negative given the side effects I could have.