Another breast lymphedema question

Hello, Pat, and welcome. Sorry for the concerns that brought you here, but hopeful you'll find good answers here to give you some direction!

It's very difficult to detect breast or other truncal lymphedema by sight, or even by measurements (which change as we breathe!) A well-trained and experienced lymphedema therapist can diagnose it, though, by clinical exam. If you haven't yet seen a lymphedema therapist, it's a good idea to see one for baseline arm measurements, personalized risk reduction tips--and in your case, for this question of breast pain. Any doctor on your team can write you a referral--find the one most likely to respond to your concerns.

As for pain being the only symptom, that was the case for my chest lymphedema (I've had mastectomies with no recon). Sometimes indentations left by a bra strap or band, on the affected side more than on the unaffected side, is a way of spotting edema, but sometimes even that is not present. Do you find that anything helps, like either good support or no support, or rest? Does anything make it worse, such as exercise, long drives, or changing barometric pressure?

Please keep us posted on what you discover. Gentle hugs,
Binney

I had to look up truncle lymphedema and I think I do have that. Strangely, the pitting happens only in my wrist but I do have swelling of the arm...discomfort in back/should of same arm, some pain in and around left breast too. I was just looking at the swelling. It came on gradually but much worse when I took a fall and used that arm to brace the fall....not nice....no one in the store even came up to ask how I was doing or help me up. I am 65, so thinking I am young is no excuse. Anyway, I think the injury didn't help and I have rotate cuff injuries there as well (and arthritis in my clavicle). Thank you for the information...glad I came here!

I've always had bra strap-and-band, even seam, indentations on & under both breasts for decades, so long as any bra I wore supported me. I was a 38I before lx & rads, now 40I just to accommodate the swollen and fibrosed breast seroma.

I have slight tender soreness in the breast (now that my LE therapist has me wearing a pad to break up the fibrosis), but extremely sharp, ripping pains beneath my forearm skin when I stretch & flex. And it's now too painful to try to do self-MLD.

I had a mammogram last week and learned something interesting. Doc showed me the difference between last years mammo and the newest one. Last year there was a lighter gray tone that she said was Lymph fluid, after a year of doing all the things I was told to do by the LEPT and all the things I learned here, it's gone. I didn't know that Lymph fluid showed in the Mammogram.

I also learned something else, my Anthem insurance doesn't cover Mammo's for woman that have had breast cancer, they only cover screening Mammo's but they don't cover diagnostic mammo's. After being diagnosed with breast cancer the Mammo is considered diagnostic for 5 years. Unbelievable!

"I also learned something else, my Anthem insurance doesn't cover Mammo's for woman that have had breast cancer, they only cover screening Mammo's but they don't cover diagnostic mammo's. After being diagnosed with breast cancer the Mammo is considered diagnostic for 5 years. Unbelievable!"

Susan, talk with the radiologist's office. You may have to talk to several people to find the person who can help. Federal law requires that certain preventative care procedures (including screening mammograms) be covered (free), but diagnostic mammograms are treated as any other health care, that is, subject to co-pays and deductibles, etc.

Generally, your oncologist (or whoever is ordering your mammograms in the first five years, wants more views, etc., than are included in the screening views. So they don't order the covered/free screening mammograms, they instead order the more exhaustive "diagnostic mammograms."

IF you'll max out on your insurance, it doesn't matter. But if you won't...then you should try for the benefit of the preventative care covered by your insurance.

What you want to find out from the radiologist is whether the diagnostic mammograms include the views that what would have been included in the screening mammogram. Often (usually?) the answer is "yes." And whether the "additional needed views" which were wanted by your doc (leading them to order the diagnostic mammogram instead of the screening mammogram) can be ordered separately--almost certainly "yes."

And then whether the combo of free/screening + additional views--that is, where you only have to pay for the "additional views" will be cheaper than the diagnostic mammogram ordered alone.

Most docs will be willing to write it as two different orders (one for screening and the second for additional views). And you may have to do it as a two-step process. That is, get the "screening mammogram," then "come back" for additional views.

HTH,

LisaAlissa

I developed lymphodema cellulitis in the breast where I had a partial mycetomy. Surgery was March 10th, 2016 and the other presented in the breast on April 4th 2016. Have been on several rounds of antibiotics including IV in hospital and an infusion. Still have reddish skin on breast and orange peel texture. Tends to get better overnight and when u begin moving around in the morning gets worse. So frustrating!

The SNB left a dent in my chest like another belly button. Only 4 nodes but its so tight and deep. It makes sense why the LE would be seen more in the chest.

PatRN10 ~ run, don't walk to find another LE therapist. Stepup-speakout.org has a certified LT finder. Of course she should be doing hands on treatment of your breast LE. How will she evaluate and diagnose it if not by touch, among other things. Also you need to feel the light touch needed to be able to truly learn self MLD. She should do it, then teach you, then watch you do it.

Just my humble opinion.

Thabk you, hugz!

Juniper, we have had others here whose initial symptoms were just as you described. Sometimes, though, doctors will say that's not how LE starts. If that happens to you smile kindly and insist on getting answers--a referral to a well-trained lymphedema therapist, for instance. Since you're certainly at risk for lymphedema, an appointment will at least provide you with baseline arm measurements and personalized risk-reduction strategies.

Hugs,
Binney