Is Lymphedema in breast only (not arm/hand) possible?

Maggerle · March 2016

I had a double modified radical mastectomy 25 years ago (left side prophylactic) All nodes, but one, were removed on BC side and were negative...I chose no radiation, chemo or even Tamoxifen...I have never been bothered w/Lymphedema...However, after a trauma injury to my right side (bc side) it seemed I was getting some swelling around the implant; I thought it was capsular contracture...I'd had that pair for 13 years, after prior capsular contracture...After seeing PS, we decided to do an exchange...I had extensive shelf work, etc. done on the right side, and an easy exchange on the left side (January 5th, this year)...Two weeks out I thought they looked perfect...A couple of weeks later I started noticing the same swelling above implant...I went in and they thought all was well, and sent me home...A few weeks later, it was "bigger" and I pitched a fit and they scheduled an ultrasound, although the doctor was not available for me to see...Nothing, whatsoever, was found on the ultra sound, and told me to return on March 30th to see the doctor (he was on vacation) Oddly enough, the day after the ultrasound, it seemed the breast was getting smaller, and a few days later it looked normal...I was elated! Last week (Spring Break) I was extremely busy w/my pet sitting biz and my right side is blown up again! I think it's Lymphedema, but only in my breast, not arm? I guess I'll find out next week, when I see the doctor, but I'd like to know if there is anything I can do proactively to alleviate some of this swelling ie. ice pack/heating pad...I can't take advil, etc., as I take a Beta Blocker, and they don't mix...So what can I do, or what else could this be? No fever or redness, just bigger...I do get some shooting pain, sometimes, but the nurse said that was just nerve endings reattaching, but she also said I didn't have Lymphedema, because it wasn't in my arm...I'm not so sure about that! If I had lymphedema would it show up in the ultrasound? Btw, after 11 weeks, implants are still soft and moveable...Sorry about all the questions, this thing is driving me up the wall! Thanks for any info!

glennie19 · March 2016

it is very possible to have truncal lymphedema ,, and not have any signs in the arm or hand.

Binney4 · March 2016

Definitely possible. Here's more information about truncal LE:

http://www.stepup-speakout.org/breast_chest_trunck...

Both extreme heat and extreme cold can actually make it worse, so neither ice nor heat packs would be recommended. Instead insist on an evaluation by a well-qualified lymphedema therapist. Any member of your healthcare team can make the referral. Here's how to find one near you:

http://www.stepup-speakout.org/Finding_a_Qualified…

Treatment for truncal lymphedema usually involves learning a gentle massage routine called Manual Lymph Drainage, and finding some chest compression garments that work for you (bras, camis, or bands). This is all doable--hang in there!

Please keep us posted. Gentle hugs,
Binney

Maggerle · March 2016

Thank you Binney4 for the information...However, would you believe I had tingling in my arm and hand all day yesterday, and last night I turned my hand over to see that my hand was swollen, along w/my wrist and forearm...I can't believe after all these years I, apparently, do have lymphedema...I called the reconstructive clinic at 8 this morning and I have not heard back yet...It's 2 o'clock now...I know they are very busy w/the surgeon being on vacation last week, but dang, it's so stressful, having read this is a forever deal, and not something that gets fixed and done! I do appreciate your encouraging words, although, the thought of a compression garment in the hot Texas weather doesn't sound pleasant...Pardon my ignorance, but it seems the lymph fluid wouldn't be able to flow if the breast were compressed? I'm actually going braless today, and trying to eliminate salt...I'm probably not seeing the whole picture, because I so don't understand any of this...I guess I'll understand very soon...Thanks for the hugs, Binney...I needed a hug today...Maggie xox

Binney4 · March 2016

Well, bummer, Maggie!

Here's how the lymph system works. The lymph vessels are close to the skin, between our skin and our muscles. Since the lymph system doesn't have its own "heart" to act as a pump like our circulatory system does, one of the ways the lymph fluid moves is by our muscles moving under them and pressing them against the skin, moving the fluid forward (that's sorta over-simplified, but you get the idea). In other words, skin and muscles put the squeeze on the lymph vessels and that helps propel the fluid. Gentle and even compression on the skin, then, allows the muscles to apply more pressure, and that results in better functioning of the lymph vessels in pushing the fluid along.

That said, it is possible, if the compression is not even or gentle, to form a barrier to lymph flow. That's what happens with too-tight cuffs or jewelry, a blood pressure cuff, and with tight bra bands under the breasts and across the shoulders. Which is why a good sports bra often works for women with truncal LE, but an underwire can cause real problems.

With early arm swelling like yours, elevation helps. Backing off on salt is good, but giving that arm a rest and keeping it supported above the level of your heart is even better. Sit down on the couch with a good book or DVD and rest it along the top of the couch. At night, support it with pillows. A few more hints: stay REALLY WELL hydrated (helps dilute the lymph fluid and keep it moving) and pause from time to time to take a few deep breaths (stimulates the largest lymph vessel in our bodies). Once you see a therapist s/he will be able to help you get that swelling reduced and give you the skills and resources to keep it that way. And the good news is, catching it early like you have makes it easier to get and keep it under control. Yes!

The point now, though, is to find a really well-trained and experienced LE therapist, get a referral to see her/him, and get started easing the fluid out of your trunk and arm. There's lots to learn, but please don't stress out about trying to learn it all at once. You can do this! Tell us how we can help!

More hugs coming your way...and some cyber brownies, double frosted,
Binney

Maggerle · March 2016

Well Binney you certainly are an angel of mercy...Thanks for the awesome little crash course on the lymph system...The good news is I actually did really really cut down on salt today, and I'm drinking lots of water...The bad news is M D Anderson did not return my call I guess they don't think I need to discuss this w/them, since I'm going in next Wednesday the 30th...I've found a Lymphedema Specialist affiliated w/UTMB (University of Texas Medical Branch) which is a much better and easier drive than downtown Houston, so I hope, when I do see the PS, he will give me a referral...I guess you could say they were competitors of sorts? Anyway, this lady Vicky Moore has LTR, CLT-LANA behind her name so it seems she has the qualifications...I asked if they use ultrasound, as I'd read a lady, on this board, said that and massage were her treatments, but they said no they didn't do ultrasound for treatment...Oh well, I'll just hang in there, munch on a cyber brownie, enjoy my hug, and try to think positive thoughts...Once again, thanks for your kindness, and I'll most certainly keep you posted....Maggie

Binney4 · March 2016

Maggie, ultrasound is not a part of standard LE treatment so, all good! Please keep us posted,
Binney

Maggerle · March 2016

Binney, I hope you see this...Saw the PS yesterday, w/my swollen breast...He would not say it's lymphedema...He said I would have it in my arm and inside my armpit...I know that not to be true...I've read there is something called truncal lymphedema that does not include the extremeties. He said it is costochondritis...But I'm not convinced, and the reason being is, when I did have that ultrasound the breast swelling went completely away and was normal for several days...Unfortunately, I didn't get a chance to tell him that, because he was in big time damage control and wouldn't stop talking and talking and talking...I've been complaining about this issue for eight weeks now, but the PA's and nurses kept telling me I didn't need to come in, because I didn't have a temperature, there was no redness, and one other thing I can't think of right now...I wish I could get a second opinion......I haven't read much about a breast swelling with costochondritis and it seems it's usually on the left side, and mine is on the right...I just wish I could see a professional lymphedema specialist, but from what I gather, you have to have a diagnosis from a doctor before they will see you...I've had this swollen breast for two months now, except, for the few days after the ultrasound...What ever can I do?

glennie19 · April 2016

You do not have to have a diagnosis of LE to be seen. Many doctors refer patients to an LE therapist for baseline arm measurements so they are on record BEFORE anything happens. You could probably make an app't to see one on your own,, BUT, insurance may only cover app't with a doctor's RX. Are any of your other doctors willing to write you a RX for seeing an LE therapist? (it's not like its drugs, after all) I got my RX from my MO, but you can get your PCP or any doctor to write you a referral.

Just a thought. Hoping the best for you.

glennie19 · April 2016

From the Mayo Clinic website. Symptoms of costochondritis:

The pain associated with costochondritis usually:

Occurs on the left side of your breastbone
Is sharp, aching or pressure-like
Affects more than one rib
Worsens when you take a deep breath or cough

Does this sound like any of your symptoms?

Maggerle · April 2016

No it doesn't glennie!

Maggerle · April 2016

glennie...I just re read the last few posts...I must have missed them, previously...I think I will just call an internist and see if I can get a referral to UTMB...They have a breast clinic just 15 minutes from me, with lymphedema specialists, and I'm fed up w/MDAnderson right now...Glad I went back and read your post...thank you!

glennie19 · April 2016

Most doctors would not recognize truncal LE if it hit them in the head. (JMO) I hope you can find one of your other doctors to write you a referral.

Binney4 · April 2016

Aw, Maggerie, that really rots! But you're on the right track by looking for whatever doctor on your team will listen to you and refrain from denying your reality. The medical professionals trained to diagnose lymphedema are not doctoors, but specially trained lymphedema therapists, so referring you to them is a very sensible step for any doctor to take. A few years ago I attended a workshop put on by the National Lymphedema Network for doctors (I am not one, but attended as part of the NLN's Lymph Science Advocacy Program to link patients with the medical and research communities). A surgeon teaching part of the workshop started her presentation by stating, "I don't treat lymphedema, I cause it!" Few surgeons at that bold, but what she said is certainly true!

Here's a page that was written by an MD for other doctors, to help them understand more about lymphedema. You might consider making some copies for your own healthcare providers:

http://www.stepup-speakout.org/essential%20informa...

I cheering for you! Let us know how it goes, please. Gentle hugs,
Binney

Maggerle · April 2016

Thanks Binney! It makes it more "doable" w/gals like you and glennie helping me navigate through the process! I'm off to bed now, and look forward to reading the article in the morning...hugs all 'round

Maggerle · April 2016

Wow, Binney...Just been reading the information you have sent me...I'm just experiencing so many emotions right now...I guess fear and anger are at the forefront...Then, perhaps, a sense of being able to help someone else down the road, as you have helped guide me...It's amazing how I expressed some of the symptoms and, literally, got the "hand", from the PA saying "that's nothing to do w/lymphedema"...I told her that the past few weeks I had a real heaviness in my legs that I hadn't experience before...Sigh...I'm going to try to see if I can get in with ANY doctor today, and get the ball rolling w/a referral...I've already spoken w/UTMB prior to my visit to MDAnderson thinking for sure they would see I had lymphedema on my right side...But no, they said the breast was from chostochondritis, the tingling and slight swelling, in the wrist and hand, were from inflamed ligaments due to my activity level...And finally, this emotion of sadness...I have been trying to get help before my hand and wrist started swelling, before the heaviness in my legs....For about 9 weeks now! I read where once you start swelling, it's not reversible, but manageable...It could have been contained to only my right breast had they known, listened!! Ugh...what can I say...I guess the only thing is to try to look at the positive side, and perhaps they will change protocol at the reconstructive center, and help women in the future, that's IF they'll even read the information I'm going to try to get to them....I'll quit belly-aching now...Thanks, again, Binnie...I'll keep you posted...

Maggerle · April 2016

This is incredible, but I was able to get an appointment w/an internist, this morning, in my previous family practice doctor's group (he died a few months ago), and after an extensive examination he actually said "it looks like M D Anderson is giving you the run around, and it seems you do have lymphedema"...First of all, I couldn't believe he said this, because they all stick together like thieves in the night...But I was so relieved that someone believed what I had suspected for 9 weeks! Anyway, I could've gotten a referral to UTMB, but he said there was a Lymphedema and Wound Care clinic right here in Clear Lake, where I live, and thought that would be a good place to go too...I guess I can always go to UTMB if this doesn't seem to pan out...The ppl at UTMB seemed really nice, but I guess I just need ppl that are qualified to help me keep this "junk" at bay...It's heartbreaking that it had to spread to my arm/hand/legs before getting a diagnosis, but at least I shouldn't have any permanent skin damage...I'm not really sure how all that works, but I'm just ready to find out how to deal w/this...Binnie, I really feel led to get involved w/the National Lymphedema Group that you gave me the information from...I don't think I've ever been so driven to do some advocacy work in my life...It's been pure hell for the past, almost 10 weeks, trying to be heard! As soon as I deal w/this issue, we'll have to talk further...

Maggie

glennie19 · April 2016

YAY, Maggie!! So glad you went to this doctor and was heard!! Sure, try the closer place first, knowing you have the other as a backup. Just find out about the therapists, so that they are certified LE therapists. Best of luck, and do keep us posted.

glennie

Binney4 · April 2016

Maggie, you're on track now to get the care you need, learn to keep on top of it all, and start to feel one whole lot better. Do something chocolate to celebrate!

Yes!
Binney

P.S. -- looking forward to that further talk about advocacy

P.S.S. -- and yes, do check out the therapists as Glennie suggested

Maggerle · April 2016

Thank you, and much love, to my two new BFF's on the planet...I have an appointment to see the doctor at the clinic next Thursday, April 7th...I wish it was Monday, but it is what it is...Thank you, glennie19, for all the encouragement and support...Thank you, Binnie4, for the the information and support...I'm just about to indulge in 3 squares of Green and Blacks 85% organic chocolate, my fav...Can't wait to get back on tract and write "THAT LETTER" to M D Anderson about the culture of presumption about lunatics because they, themselves, are uninformed about lymphedema symptoms...It's going to be a doozy...lol...

glennie19 · April 2016

Go Maggie!!! **having some Dove dark chocolate right now, myself **

Aunt_Beaner · April 2016

I had Stage 3 invasive, lumpectomy, excision of 11 lymph nodes, chemo and radiation. About 6 months after completing radiation, I got lymphedema - yes, only in the breast. I learned a lot from the local lymphedema specialist (she's an OT), as referenced by Binney2. This included having my spouse learn soft touch massage/drainage techniques followed by compression. The massage helps to drain the lymph fluid and the compression slows the refilling process. I found that it helped quite a bit.

Maggerle · April 2016

Thank you Aunt_Beaner...Unfortunately, I was diagnosed this past Friday, and have an appointment at a Lymphedema clinic this coming Thursday...Also, to my misfortune, I'm divorced, so I'm not sure how that's going to work out with the drainage technique...I know I've got itching to the right side of my breast/implant and slightly around to my back now...Also, my hand and wrist are slightly swollen, but I don't really see anything in my arm...From what I've learned I'll get measured this Thursday...Btw, you actually did educate me on the massage/drainage followed by compression information...I didn't really have a picture of how all that worked, but now I do w/this sentence you wrote "The massage helps to drain the lymph fluid and the compression slows the refilling process" So thank you for that...Maggie

Binney4 · April 2016

Aunt Beaner, welcome! Thank you for your post, and I'm so glad to hear you've gotten great help!

Maggie, I've sure been thinking of you. The waiting is so hard! Any massage you need to do you'll be able to do alone (though doing the back takes some trial-and-error tricks. The gals here have several different techniques for that--just ask when you're ready to tackle that step). For now, keep up with the fluids, pausing for deep breathing, and a bit of gentle fist-pumping with your arm elevated. It'll be good!

Hugs,
Binney

Maggerle · April 2016

Thanks Binney, you are the Queen of Kind, and I'm sure you have comforted 100's, if not 1000's of women...Yes, the waiting is hard, and especially, because I swell a tad bit more each morning...Because it's become painful, underneath, I've stopped wearing a bra, and that might be why...Right now, I'm hoping upon hope that they give me a manual lymph drainage treatment on Thursday, because my nerves can't take much more of this being left untreated...Also, I'm wondering if I get a compression garment on Thursday...I guess I'll find out then!

Hugs to you too! Maggie

Binney4 · April 2016

Maggie, compression garments aren't likely on your first visit. She may do the Manual Lymph Drainage (massage), and she might wrap your hand/arm in special bandages (that look like ACE bandages but have a different level of elasticity).

If you have a simple sports bra it may give you some support and control without adding to the pain. We're looking forward to Thursday with you!

Yes!
Binney

glennie19 · April 2016

It's almost Thursday!!

Maggerle · April 2016

glennie...go read my post Medicare won't pay for MLD seriously!

CynthiaB · April 2016

Hello....sorry to hear we're both here with this problem! I have breast lymphedema and also swelling of my hand and arm. I have seen my surgeon (twice), my oncologist, physical therapist and am seeing a certified massage therapist. Only the massage therapist will acknowledge the pain, worry and swelling I am experiencing. It's been difficult (more than the bi lateral mastectomy). My issue came from an error in surgery that caused a large hematoma on my left side. My right side is perfectly fine (my SNB was negative, only one node on each side). I find the massage therapy is the most helpful. The physical therapy has helped some too. I feel very disappointed that the doctors won't acknowledge and help me with this. I have done a lot of self education and will continue to do so. I have been (as one doctor said) very 'aggressive' about this because it's early for me and I'm trying to get it to resolve before it becomes worse and a lifelong problem (although I imagine it will be problem and risk for life). Keep after your doctors and if anyone else reads this post and has any tips, please share......I can't get my doctors to listen to me. They say the swollen area is fat...yup, fat that comes and gos?

glennie19 · April 2016

Maggie that just sucks!!

Binney4 · April 2016

Cynthia, I hear you on the frustration of not being able to get good help with lymphedema from our medical providers. Here's a page you can copy off and share with them, Essential Information for Healthcare Providers, written by an MD with breast cancer-related lymphedema:

http://www.stepup-speakout.org/essential%20informa...

Hopefully educating your doctors and nurses will help women coming after you to get better treatment, and faster.

I'm looking forward with you to therapy that will help you gain good control over the lymphedema you're dealing with. It's a steep learning curve and a tough road emotionally too, but you can do it! Let us know how we can help.

Gentle hugs,
Binney

Is Lymphedema in breast only (not arm/hand) possible?

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