Lymphedema 15 years out

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Tigre
Tigre Member Posts: 3
edited November 2016 in Lymphedema

Don't quite know who/how to ask, but has anyone here ever had lymphedema (truncal) become an issue--maybe even slowly but surely--over time? And/or 10-15 years out? I had 5 different malignancies in rt breast (multi-focal presentation), a sentinel node biopsy when it was still a "study", rad mastectomy with tram-flap reconstruction followed by chemo. They decided against radiation due to the high number of places and told me they would make it up with the chemo. (arrgh) My tumors were Estrogen-pos, so they wanted to shut things off as quickly as possible. (That was not fun). Anyway, just a framework...Am pretty sure I am dealing with what I have read described as and called 'truncal lymphedema' and what in the hey (where, who, anything!) do I do now?

I am wearing the sleeve pretty consistently until I feel better (this is not the first time I have gotten to the point in my denial where I am miserably uncomfortable) and a shaping camisole. I am faithful and gentle with my rebounder which I believe strongly in...But remember! When I was diagnosed/treated, they didn't hardly want you to use your arm for much of anything. But I moved away from that thinking over time tho I have always been careful. One problem is...I am not a big sweller. By that I mean that even with severe broken bones, I had all the color, all the pain, but rarely enough swelling to notice. I may have been dealing with this for some time....?

Any input, shared info/experience would be appreciated!

Thanks---

T.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2016

    Tigre - sorry for this flare. I have truncal with just 2 sentinal nodes on the left side. Then when I had a recurrence and ALND, I now have breast & truncal on the right side. Below is a link with lots of good inforrmation about LE.

    http://stepup-speakout.org/

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  • paintThesky
    paintThesky Member Posts: 56
    edited November 2016

    Yes I have Truncal, and it came on slow, and is really bad now. I had breast cancer in 2001, and took treatments in 2002.

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  • LymphActivist
    LymphActivist Member Posts: 64
    edited November 2016

    Breast and/or truncal lymphedema is a common consequence of breast irradiation. You may read about this condition and its treatment on my web site at:

    http://www.lymphactivist.org/breast_lymphedema_for...

    Discuss it with your primary care physician and get a referral to a lymphedema trained therapist for an evaluation and treatment if appropriate.

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  • Tigre
    Tigre Member Posts: 3
    edited November 2016

    "Flare" is encouraging....(*wry smile*)...but I am currently not in a position to get any kind of treatment or help. At least not until January. So you guys are it. Of course, it's possible that I am still living in the state of denial. Or that something else is making me feel so terrible...As it is, my lower back--esp on compromised side and my neck--sometimes the shoulder area are Painful!! I am rebounding--very gently--and wearing the (old!! and only!) sleeve. I recently purchased a camisole that is stretchy and snug which I am wearing at night. I see maybe a little progress. Please tell me I can feel better. You have No idea what I am up against in my Story...!

    If this IS a 'flare', can I expect any relief? I am even being careful not to eat 'inflammatory' foods...I do have pain meds for this and long time post chemo arthritic-type issues which help but recently it is a 4 hrs span and then I am in them again!!

    What really tipped me off was my Bestie (double mastectomy/reconstruct 3-2 years ago and has had a lot of this) suggesting that the pain that was moving around in upper right back to shoulder (so that you could Not touch it!!!) might be lymphedema. I groaned at my own lack of diagnostic skill about this and put on my sleeve. The next morning the terrible shoulder pain was some better. It seems to move around a lot, tho, and all of it is much worse in the morning when I first get up. In fact, some mornings, I have trouble when I get up even standing up straight. That seems to be a pointer as well. :/ After sitting up awhile with a warm hot log and a cup of something and pain meds, i can start to move. I am 61 and for this far out in pretty good health otherwise. I have lost almost #40 this last year of cancer/treatment gained weight that would NOT come off. (THM--Trim Healthy Mama came into my life and saved it...I have about 20 to go. Would like to feel well enough to 'cook'!!)

    Wow. Even reading me further convinces me that we are on the right track.

    So. An additional concern. I am flying to the West Coast (from Eastern KS) for 10 days between Thx and Christmas. Any wisdom for compression tees, sleeves, newer (please, not expensive!) sleeves. Leggings?? And how about anyone discovering that it might or might not help to wear the stuff for a period of time after arriving to destination.

    thanks for the replies, ladies...for some reason, I was surprised. And touched. Been feeling a bit alone with all this lately.

    Thanks again.

    T.

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  • tsoebbin
    tsoebbin Member Posts: 474
    edited November 2016

    Can you afford to see a lymphedema PT just once? If you could they could show you the best treatment to help with your exact situation. Even if insurance wouldn't cover it you may find relief in just one session with a home program?

    Sorry this is flaring up now. Hope it goes away quickly.

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  • ksusan
    ksusan Member Posts: 4,505
    edited November 2016

    When people ask I, too, say, "I've had surgery." It tends not to go farther than that unless someone has some knowledge of breast cancer and raises it, in which case I usually answer.

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  • Tigre
    Tigre Member Posts: 3
    edited November 2016

    One more question...I will be flying in Dec and wondering if you all even use compression tees and/or compression leggings...? Could it help, do you think? Even if I Un-flaring:) --would it be proactively helpful?

    TIA

    T.

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited November 2016

    Tigre, the tough part is, everyone is different. So we can all tell you what worked for us, but it may not work for you. Frustrating indeed.

    That said, my experience has been that the LE experts didn't tell me anything I didn't already know from reading here, and were no help at all, honestly. It was free because we had reached our out-of-pocket max, I sure wouldn't pay for it. Some have said the opposite, though.

    I have mild truncal LE which has, so far, not spread to the arm, as far as I can tell anyway. I have tried everything to reduce it - MLD, dry brushing, compression, exercises, etc. and none of those things make any difference at all. It increases and decreases somewhat, on its own schedule, which is entirely random. It's often worse when I first get up in the morning, maybe I roll over to my side when sleeping and compress it, or maybe the lymph flows better when you are upright and moving around, who knows.

    As far as flying goes...... I recently flew for the first time since surgery, and after a ridiculously difficult decision I chose not to wear the sleeve/gauntlet, (and the arm was fine), I did wear a compression tee on the first flight but forgot it on the second - there was no change either way.



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