Lymphedema (Maybe) in breast only

Rae7200 · October 2018

First, let me say that I've been very fortunate to have a great team -- MO, RO, SO. The CNP in my RO's office may be one of my favorite medical personnel in the entire world -- compassionate, extraordinarily competent -- I think the world of her. I'm so glad that I spent a lot of time choosing my team, though looking back I'm amazed I did it while I was in a state of shock. I guess all my professional training pre-retirement kicked in ;-) .Second, sorry in advance for the long and detailed email, but it takes as long as it takes to tell the story.

Okay, so about 2 months ago on 8/10, I see MO for my 6-week check, and he comments during my physical exam that I have edema in my L breast (the one that had the lumpectomy in 2014, and the axillary node residual or recurrence in 2017, radiation both times (16 days first time, 5 weeks 2nd time, but not to the same areas). He did not refer me to anyone. [I do plan to ask him when I see him in November why he didn't refer me to someone when he noticed the edema.] Then 10 days ago, on 10/9, I see my wonderful CNP in Radiology for my annual check, and she also says that I have edema in that breast, and that it's the result of the trauma of surgery and radiation. She refers me to the Lymphedema Clinic at the Breast Center at the Johns Hopkins campus where I had my surgery, which is also closest to my home (only a 45 min drive instead of an hour). I like staying w/ Hopkins team when I can, as it makes communications among my MO, RO, surgeon, so much easier, and my PCP also has easy access to some of their records as well, even though he's no longer on their faculty. When I spoke with one of the PTs by phone (after I set up the initial consult), she seemed puzzled, and said it sounds like it's lymphedema, not edema. She opined that maybe they're just used to thinking of lymphedema in the arms, and edema elsewhere. I finally got an appointment for an evaluation for 10/25. I couldn't find the PT's name listed to look her up, but I will be inquiring about her credentials when I see her ;-) . My BC surgeon is the Director of the Breast Center at that hospital, and one of her primary interests is preventing lymphedema, which was one of the reasons I chose her (in addition to her other stellar credentials, rec from my PCP, etc.). I cannot imagine that she would hire someone less than well qualified, but I intend to do my own due diligence. I spoke with her (the PT) about bringing my DH along to learn the various PT techniques, and she said to bring him to the 2nd visit, as the first one would be for evaluation only.

So I've been reading the various forums (fora? fori?) here like mad, as well as looking at other on-line sites, and just got the Lymphedema book by Burt and White (thank you Amazon for fast delivery). I'd been wearing Amoena Frances bras since this last surgery - they are just sooooo comfortable. I had kept the Amoenas I used in 2014 just in case I wanted sports bras, and wound up using them in 2017-2018. I many have gotten a few new ones as well. They do have some compression, I think about 8%; I'd have to check. They'd gotten stretched out about an inch, so I just ordered 4 more to tide me over until I find out what's going on, and whether or not I have to wear more serious compression garments 24/7, or even less, yada, yada. The PT suggested I try one of my older bras (they were underwire) to see if they gave me more support. I tried one for about 8 hours. It felt really snug (I'd gained about 10-15 pounds), but it had so much more structure than the Amoena), and when I took it off, I realized that my left breast felt like it had been in a vise! The areola was flattened and more orange peel than it had ever been. Two days later it finally looked more normal (but still not quite like the right breast). There endeth that experiment with me old bras. I put them back in a bag on the top of my closet shelf to await their fate. Maybe if my weight came back down 10 -15 pounds?

Anything else I should be doing/not doing?

Binney4 · October 2018

Hello, Rae, and welcome. Sorry for the "swell" reason that brought you here, but glad you found us. So glad you have an appointment up-coming shortly. For what it's worth, your experience with the underwire bra would tend to support the diagnosis of lymphedema, since underwires with truncal swelling tend to block lymph flow and exacerbate symptoms. Not good, as you discovered!

Here are a few things you can do that may help until you see the lymphedema therapist:

1. Make an extra effort to stay well hydrated. This helps dilute the (rather sluggish) lymph fluid and keep it flowing.

2. Several times throughout the day stop and do some deep breathing. This stimulates the largest lymph vessel in our bodies (which runs vertically through the torso).

3. Call for medical help IMMEDIATELY if you severe pain, new swelling, redness, fever or feel ill. Because: cellulitis is a special risk with lymphedema (bacteria love the warm, protein rich environment of stagnant lymph fluid--sigh!) Cellulitis is an emergency, so don't be shy about calling for help.

More about breast/chest lymphedema (called truncal lymphedema) here:

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

Do keep us posted on how you're doing, and tell us how we can help! Gentle hugs,
Binney

Rae7200 · October 2018

Hi Binney,

Thanks so much for the (s)welcome and the great suggestions. Thanks also for the reminder about increasing my fluids. I have already increased my fluid uptake. I drink mostly water, so that’s a good thing. I have a large cup of coffee in the morning, and then water throughout the day. My cardiologist put me on metamucil 3x/day when I first started seeing her about 10 years ago (yes, the body adjusts very quickly to the increase in fiber), so now that’s just 3 more glasses of liquid to my day’s intake. Add that to the water that I take with my morning and evening meds, plus the calcium that I take at time other than with those meds, and I’m already on my way. I’m working at remembering to take a glass of water in with me when we go to watch TV.

I’m familiar with cellulitis as something to avoid, as about 15-20 years ago, I put on a pair of boots that had been sitting in my closet, and wound up with a spider bite, and a very red, swollen toe and a trip to the emergency room. Antibiotics and a discussion about avoiding cellulitis was my introduction to the subject. If my memory serves me right (and it may not - I miss my estrogen!), several days later I was back in the ER with an allergic reaction to the Keflex they gave me. Why was I in the ER? This was when I was working long and late hours, and before the days of Patient First and other Doc in the Box convenience locations for after hours docs. I live about 2 miles from a hospital — and I knew enough not to wait. Now my Medicalert bracelet shows allergic reaction to cephalosporins, because if you’re allergic to one, there’s a very good chance you’re allergic to them all.

Could you send me the link to deep breathing exercises? Or is it on the stepup-speakout page?

Thanks again. This site has been a lifesaver, especially this second time around.

Rae

Binney4 · October 2018

Rae, good that you know what you're looking for with cellulitis. Well, not good how you learned to look out for it, that's for sure!

Just a few deep breaths several times a day is all you need, but I'll bump a thread for you that describes a "TAI CHI BREATHING EXERCISE" that a lot of us like to use. Look for it near the top of this forum.

Keep us posted, please!

Hugs,
Binney

sylviaexmouthuk · October 2018

Hello Rae,

I read your post with interest and I looked up the book you mentioned, Lymphoedema by Burt and White and noticed that it was published in 2005. You might want to read a much more recent book entitled Let's Talk Lymphoedema – The essential guide to everything you need to know by Dr Peter Mortimer, published in 2016. Dr Peter Mortimer is considered the guru by the lymphoedema specialists at the hospital I attend. He works at one of the big hospitals in London, UK. I found it very easy to read and it seems to cover everything. He is the President of the Lymphoedema charity here in the UK and they publish a quarterly magazine entitled Lymphline.

I have read lots of Binney's posts and really respect her.

I am going to have a look at these Tai Chi exercises that she has just bumped up.

Wishing you all the best.

Sylvia xxxx

Rae7200 · October 2018

Hi Sylvia,

Thanks so much!

I noticed the copyright date as well, and was concerned, but figured it would be a place to start, especially since some knowledgeable ladies in the BCO Swell community recommended it. I just ordered the Mortimer book, and Amazon should deliver it on Sunday. I’ll also do some searching later for authors on this side of the pond.😉

Just yesterday’s deep breathing (one set of 4-5) and wearing a new Ameona bra with only 8% or so compression really reduced the thickening of the skin of the breast and swelling today. Wow!

Must run to get dressed for lunch with a sister retiree. I overslept this morning (sleep when you can get it on tamoxifen). More later perhaps.

Rae

Vargadoll · October 2018

Rae- I have breast LE (or super Boob as I call it) I wear a swell spot wrap from sun up to sun down. The only time I don't have it on is when I'm swimming. It keeps my breast tissue soft. No more hard spots for this girl! My PT tells me I'm the most dedicated LE patient she has...I see and feel the difference and that's what make me stay on top of the LE. Enjoy your lunch... (and sleep)

Rae7200 · October 2018

Thanks, Vargadoll!

Do you wear a compression garment? What type? Does the swell spot wrap fit inside? I’m such a newbie. I’m sure the answers are either in the books and posts I haven’t read yet or will be explained to me by the PT. I just want to know everything *now*!

Lunch was wonderful. I’m in my recliner with my iPad, which means there’s a good chance I’ll doze off before the afternoon is over... Lack of sleep + recliner = zzzzzzzz.

Rae

Vargadoll · October 2018

Rae- I'm at a school play I'll send pictures later!

Vargadoll · October 2018

I wear either the black or cream colored one everyday. The grey one is very thick and I only wear it occasionally mainly at home. It doesn't wrap all the way around it comes to just my arm pit were swelling can be a problem sometimes. The black wrap fits me the best. I'm a 34 DD . When I was measured for the cream one I had a compression bra on and it smushed my boobs so a small size was ordered. It fits I just feel like the black one gets all of my boob. My cleavage is where I get the hard spots and I can get the black one in there good. As far as bras I have a collection! Insurance paid for 5 and I bought the others.

Anita has several that I like. I also has 2 Belize and have a move hate relationship with them. I love the way they feel just hate the way they make me look. Hope this helps! I was 8 months in to extreme swelling when I went to a different PT and she showed me a swell spot wrap and suggested me wearing one...I had one with my Belize bra and had no idea what it was for!! Previous PT had no informed me. The swell spot wrap makes a huge difference for me!

Rae7200 · October 2018

Thanks, Vargadoll. The pictures are a big help. I’m looking forward to the PT evaluation on Thursday.

Vargadoll · October 2018

PT will be a big help! (Said with a sigh and if you get a good one!) I also sleep in a night garment and have a flexitouch pump. All part of the LE journey!

Rae7200 · October 2018

Well, it's official. I have LE. I saw my PT on Thursday, 10/25, and it's in the breast and a slight area surrounding (I need to get clarification on that), because after she gave me the news that it was in my upper L arm, my brain went numb for a bit. It's not in the hands. On the horizon: sleeve, garment/bra - don't know if off the shelf or custom for those. Probably a pump. Scheduled 4 weeks, 2x/week, starting this coming Tues. My husband will come to the next session so he can learn how to do MLD as well. I really like my PT; she is certified Klose, gave me # hours (Impressive), and # years she has been practicing. I reviewed her clinical notes yesterday, and they were quite thorough. She made a note in file about 8 weeks, which I will ask her about. I'm relieved to have started the process. I also connected with a long ago friend who lives about an hour away. She has been cancer free for 16 years. She used to wear a sleeve and glove just when she flew, but recently started wearing more often. We’ll connect by phone soon and chat more. She gave me the name of the company she used and the excellent fitter, in case I have any choice.

Binney4 · October 2018

Rae, good on you for landing with a well-trained therapist that you like--huge step in the right direction! Kind of a steep learning curve, but you've got this! Kudos to your husband for learning along with you. It'll be good! Do let us know what you discover.

Gentle hugs,
Binney

Lomlin · October 2018

Who do I see if I have lymphedema? What are the symptoms? Last I saw my radiologist she just feels around in the area where the lump was taken and the lymph nodes, but no mention of lymphedema or what to do if I get it. And excuse my ignorance on the medical abbreviations but what is MO? Thanks.

Rae7200 · October 2018

Hi Lin lin,

I'm really a newbie, and the other ladies will be able to give you more complete answers. Here's what I can tell you: Go to the Stepup-Speakout.org site, which was put together by two of the ladies here, I think. It's a fabulous resource on everything related to lymphedema. I have it open in a tab on my computer.

If you have lymphedema, you'll want to see a physical therapist who is trained in lymphadema (not all are) by an accredited organization. An MO is a Medical Oncologist. Anytime you're on the main breast cancer.org page (not in the subtopics), on the left side there's a tab for “abbreviations". It's a lifesaver.

Symptoms: For me, my breast skin felt thicker, like the peel of an navel orange instead of a plum. A lot of the breast felt thicker, not soft, like my other breast. The shape also changed and looked more like a round orange on my chest, rather than the slightly droopy older woman shape of my non-BC breast. When I looked at my upper arms after the diagnosis, I could see a difference, especially the part of the arm closest to the armpit.

I hope you don't have to join us, but it's good that you're asking questins to be informed.

Rae

Binney4 · October 2018

Lin-lin, hello,

Any member of your healthcare team can write you a referral to see a well-trained lymphedema therapist. Here's how to find one near you:

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

Lymphedema therapists are the medical professionals trained to diagnose and treat lymphedema, so good idea to get an appointment whether you have lymphedema or not, since your breast cancer treatment creates a risk for it. The therapist will take measurements for future reference, give you personalized risk-reduction suggestions, and if she diagnoses lymphedema, s/he will treat it as well.

Rae has given you a good example of the symptoms of breast (or truncal) lymphedema, which might also include marks in your skin where your bra straps and bottom band are that last a longish time after you remove the bra. Arm lymphedema symptoms include swelling of all or part of the arm and/or hand, but early-stage lymphedema may not show up as visible swelling. So you'll want to pay attention to heaviness or achiness in your arm, or your arm just "feeling funny." Again, a qualified lymphedema therapist will be the one to help you determine when these symptoms indicate lymphedema.

I hope you never have to join our "swell" sisterhood, but please know it's manageable, and we're here for you too!

Gentle hugs,
Binney

tlfrank · October 2018

The pad I'm wearing is a little different than those pictured above. The physical therapist I'm seeing assures me that things will "Settle down" eventually. I've been going every other week for 2 months....it's getting a little old. My pectoral muscle is very hard and tight....is anyone else suffering with this in addition?

Vargadoll · October 2018

My right side does get tight on my LE side. I do something like snow angels on a half foam roller on the floor. It's a feel good hurt!

thrdage · December 2018

Hi, well I, too, am new to this group...do I understand that there is a difference between an edema diagnosis and a lymphedema diagnosis? My prob appears to be limited to my breast, at this point. I'm scheduled to meet LE Therapist in a week, so will know more then. Anyway, this group seems to be a excellent resource so thank you all! I'm also positioned to begin participating in the Verzenio Phase III pilot (for those of us who do NOT have metatastic bc) and wonder if AIs or other adjuvant therapy have any connection to LE? Anyone know? Finally, I'm a (very) low-income senior, living alone, and am frozen by the thought of more expense. Anyone know of any support ($) for supplies (bras, inserts, whatever?), therapies, etc.? Again, thank you.

tlfrank · December 2018

Yes there is a difference between edema and lymphademia. I don't have the education to explain the differences here, this is just want my physical therapist told me when I asked her if my "cankles" were connected to the lymphademia.

Lymphedema (Maybe) in breast only

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