Truncal lymphedema - does this sound right?

Houndmommy · December 2010

I have been wondering for about 2 months as to whether or not I might have some mild truncal lymphedema but kept telling myself I was imagining things. Well, the other day I was in for a bra fitting (mastecomy) and the 2 ladies working with me asked if I was swollen and suggested I see a therapist. I live in the boonies of PA and my options are very limited. When I found someone and asked her if she would be able to tell me if I have truncal lymhedema she said that she goes by what the person tells her in regards to what they are feeling. Does this sound correct? If my swelling is mild is my description of how the area feels the only way to dx this?

Thanks, Kim

kira66715 · December 2010

Kim, I'm going to ask Binney to answer--she's an expert on truncal lymphedema. My understanding is that it is very uncomfortable--more than arm LE--and impossible to measure, so going by symptoms sounds right--but examination should help her as well.

Here's a link with info:

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Also, here's a link to finding a qualified therapist:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Kira

Binney4 · December 2010

Hi, Kim,

I'm really sorry about the lymphedema worry, and the expectation that you have to diagnose this all by yourself! Surprised But I have to say that your experience sounds a lot like mine -- that sense of "imagining things" and not being able to get it confirmed one way or another. I went around for months fearing it was "all in my head." Very unsettling!

There's no way to measure breast/chest lymphedema, because we breathe and that changes the measurements. Arms are a different matter, of course, but when it's in our chest instead there's no standard criteria to use for diagnosis. Tongue out Which leaves us with having to trust our own sense of what's going on. In your case the fact that the bra fitters mentioned it to you is actually significant. I'd trust them on that and go for treatment.

I can't tell from your post whether you were evaluated by the therapist or just talked to her. If she did a physical exam she could likely tell from the feel whether there's lymphedema there or not. But that's still a somewhat subjective judgement call. The proof of truncal lymphedema is sometimes only in the treatment: if Manual Lymph Drainage helps reduce swelling and the sensations you're experiencing, then it's lymphedema. (There's a test called lymphoscintigraphy, but it's invasive and not available everywhere, and since you've had bc surgery there's already a basis to believe that what you're dealing with is lymphedema).

All that just to say, yes, I could see why a therapist might tell you that. More helpful would be to ask her how much experience she's had treating breast lymphedema, and what treatment she would offer you if she determines that's what you're dealing with.

Does any of that help? Do keep us posted!

Gentle hugs,
Binney

kcshreve · December 2010

I can't add info, but I will say that at first I didn't even know there was such a thing as truncal LE, but I suspected my arm, for sure. I went to see a LE therapist, who did one treatment and a few hours later I had relief in my arm and, to my surprise, also to my trunk. Ahhhhh! That pretty much settled it for me.

Houndmommy · December 2010

Thanks for your help ladies! I appreciate your comments.

Kira, I'll look at the links you posted. Thanks.

Binney, I talked to the therapist on the phone. I will be meeting with her tomorrow. Your post really helped. I feel better about her comment now. There is a good lymphedema management group associated with the cancer center I went to but they don't take my insurance. When I called them and asked if they could recommend someone else they said this particular therapist was the only other LE therapist in the area. So, I am hopeful she is okay.

I am relieved the bra fitters made the comment they did because it made me seek help. I definitely have some puffiness and a bit of discomfort so hopefully she can help me. Or, at least I can stop worrying.

Thanks again! I'm very thankful for your help.

Kim

kira66715 · December 2010

bump for KansasKay

Rachel1966 · December 2010

I am 3 months post bilateral mastectomy...14 days post my 3rd chemo treatment and I've noticed these last 2 days what feels like swelling of my back, sides, chest, back of neck / head. Is this truncal lymphedema? Why is is happening now at this point? My skin hurts to touch. It feels like I have an extra layer of skin. Is there anything I can do to help until I can see the doctor on tuesday?

kira66715 · December 2010

Rachel,

I could be truncal lymphedema--just want to make sure it's not an infection--it hurts, but is it red, warm, do you have a fever or feel ill? If you do--call immediately.

Also, chemo can cause fluid shifts and nerve issues--at 14 days out, is your white count usually down? You could be at risk for an infection.

Truncal lymphedema is managed by compression garments and massage: in general, with swelling, you try and drink a lot, take a lot of deep breaths.

When in doubt--don't wait, but call your doctor.

Here are a couple of links--please let us know how you make out--

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

The more I'm writing, the more I think you should check in with your doctor.

Kira

Rachel1966 · December 2010

I did call the oncologist and they can't see me until Tuesday.. The nurse said to not drink as much as I do and wait until tuesday unless I have trouble breathing, then go to ER.

It just feels very weird. I have had a cold since day 8 post treatment, saw another oncologist yesterday who said I had something viral and gave me antibiotics just in case because of my high risk of infection. My wbc was 14 and I do get the Neulasta shot 24hrs after chemo. So the cold started day 8 post and I noticed this strange feeling maybe 2-3 days ago. Just weird.

sharalou · December 2010

The nurse at my breast surgeon's office recommended a compression bra/cami. Anyone else?

ahew · December 2010

Sharalou: I have beeen wearing a compression bra and occasionally a Wear Ease cami (slimmer) instead. Although the compression bra is uncomfortable after several hours, it does help a lot with the truncal lymphedema. Am hoping that my appeal for a Flexitouch will be approved and if so that will help even more.

kira66715 · December 2010

Rachel, for lymphedema, and for general health, you actually want to hydrate well--so please don't drink less--it won't help your cold, and if the swelling is lymphedema, it can make it worse.

The only swelling where you restrict fluids is in heart failure, and that's just not the case here--all edema is not equal, and the nurse was just likely equating swelling with fluid excess--in lymphedema, we swell more if we're dehydrated.

If it is lymphedema, it can flare with a cold.

Hope you get to the bottom of this soon--unfortunately, lack of knowledge about lymphedema is rampant.

Kira

Rachel1966 · December 2010

thank you so much Kira for your information... I also thought drinking more in keeping hydrated would be more beneficial but I'm not a nurse and she's an oncology nurse who deals with this or so I thought... But, yeah, I'm continuing to drink and pee.

Thanks again - I'll see what the onc says on tuesday. I'm due for my last TC treatment on friday.

Truncal lymphedema - does this sound right?

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