Sleeve Pushing Fluid to Underarm and Rib Area; Becoming Painful

ThreeTree

Looking for any similar experiences or ideas/suggestions please: My sleeve moves fluid out of my arm, but seems to deposit it all in the underarm area and then it moves out into my rib space, causing pressure that is now getting slightly sore/painful. This seems to be a lymph fluid problem and not a progression of the cancer from all I can tell. I am breathing just fine and there are no lumps or bumps - just a sore feeling in the whole general area that is similar to the feeling of a bruise when pressure is placed on it. I had a mastectomy (left side) and wound up with skin folds close to the underarm area, so that area has always been a bit of a mess. It is the same area where the surgical drain was too and that remained a little "squishy" after the surgery. It has never been completely normal again, and it seems to be the lymph fluid flowing from my arm. The longer I've worn the sleeve, though, the more fluid filled that area under my arm and into my ribs seems to become.

I did have proton radiation to that area (finished Nov 2019), and I suppose there is some possibility that this is a late side effect from radiation (rib soreness), but again, it seems much more like an excess/non-moving fluid thing.

I am supposed to see my oncologist for a routine follow up later this week, but she does not seem particularly interested in or focused on the lymphedema. It has been my surgeon who first noticed and has handled all of my lymphedema issues - largely referring me to OT. I'm supposed to see the surgeon for a follow up later this month and I would actually rather brooch this problem with her and not the oncologist. My concern is what seems to be the overall increasing pressure and the possibility of an infection starting in that area. It seems to me that if there is enough fluid just sitting there that it can cause some pressure type pain, it could also harbor bacteria and cause an infection. While the sleeve seems to move fluid out of my arm and into this other area of my body, it doesn't seem to move out of the underarm and rib area fast enough, but seems to be pooling a bit.

Has anyone else had this experience or have any ideas or suggestions about this issue? I can ask the surgeon for a new referral to OT later this month, but in the meantime am getting a bit more concerned that this isn't just a benign sort of thing. Thanks to any and all who read and/or respond.

MinusTwo

ThreeTree - maybe you'll find this site useful. Lot of good information. Everything I've read and seen says to look for a certified trained LE physical therapist instead if OT. Still - trained is the key. I don't think I'd wait. Get to see someone as soon as you can.

https://www.stepup-speakout.org/

ThreeTree

Minus Two - Thank you so much for responding and for the helpful website link. I looked at it a little bit, and I think what I have is chest/truncal lymphedema, in addition to what is in my arm. Actually in the few hours since I posted I recalled some exercises I heard about previously (from an online video) that are supposed to get the fluid moving and began doing some of them. I actually think it's helped already and there has been some improvement since my post. I'm going to keep up with those until I see one of the doctors, preferably the surgeon.

The OT I see is a certified lymphedema specialist. I too have seen that most go to PT, but my medical facility refers to the OT's. It is a large teaching hospital with a medical school, etc. in a major city, so I like to think they all know what they are doing and that the OT is appropriate in this case. I'll investigate that issue more too. Thanks again for your help.

MinusTwo

ThreeTree - glad to hear you have some relief already.
I have seen both a PT and an OT. At MD Anderson, they focus on different areas but both were good.

Rah2464

ThreeTree glad you are seeing a certified LE therapist. It does sound like you have some truncal LE. When you see your therapist, have she/he show you at home clearing exercises to address the area as much as possible. Also discuss if there are any compression garments for the trunk that would be helpful. I would also discuss with your MO as well as your surgeon. If you are at risk for developing an infection, your MO will certainly want to be on top of that.

I hope you get some attention to that area quickly and get some relief.

ThreeTree

Rah - Thank you for the comments and suggestions. Yes, I think that maybe I need to look into more than just a compression sleeve. I'm thinking that my trunk area could use some compression too. It just wasn't all that noticeable initially, after the surgery and radiation - seems to be showing up a bit later. I started doing some exercises that seem to be helping enough to at least take the (mild) pain I've been experiencing away. Deep breathing seems to help the most.

buttonsmachine

You may want to ask your doctor or LE therapist about getting a compression pump - specifically the kind called a Flexi Touch. You can use it for a few hours a week while you're sitting watching TV or reading a book, and it moves the fluid out of you arm but also across your chest, torso, and back. It can be helpful for those of us who have lymph that gets stuck above where the sleeve ends. I am hoping to get mine soon, although it took a while for my insurance to approve it. Best wishes to you!

ThreeTree

Thanks Buttonsmachine. I have looked into a FlexiTouch (my OT highly recommended it), but my insurance wouldn't cover it, and I felt a bit "hounded" by their salesperson who kept calling me in a "lets just get this done now" sort of way. I'm always suspect when that kind of behavior is involved. I also understand that they can be quite cumbersome and difficult to get wrapped on properly - especially by oneself. I live alone and frankly it all just sounded like "too much" for me - even if the insurance had covered it.

I had to move apartments (they wanted to renovate my old one) in the middle of radiation (2019) and I never quite got the energy back to fully set up my new apartment, so I also don't really have a place to sit with the pump. I heard that FlexiTouch sends someone to your home (yikes!) to help you set up and to show you how it works. I got rid of my old couch and bed (am sleeping on a cot these days) when I moved, and have yet to replace them. I just have no energy - especially since starting letrozole. I'm also surrounded by stacks of boxes that I've yet to go through and deal with. I've got the basics out, but no more. I had thought I would sleep on the cot for a just few weeks while I found a new bed, but the new bed has yet to happen. I'm actually not too bad with just the cot - I like that it is small, space saving, and not nearly as cumbersome as a real bed; although sometimes I'd love to have one. I am finding that the AI just wreaks havoc on my motivation, my "go-get-em" or whatever you call it. It has taken away my mojo. Pursuing a lot of these possibilities like a pump, just seem way to overwhelming, stressful, and anxiety producing ever since the letrozole.

I sure wish it wasn't "it's always something" with this stupid breast cancer!

I hope the pump works out well for you - I have read of many who can't say enough positive about it.

flashlight

ThreeTree, I wonder if some of the lymphedema is caused by you sleeping on a cot. I had to shovel the driveway and I am still swollen from it. I found that if I sleep on my left side it hurts so much when I wake up. If you can't get a bed right now look into the Aerobed or something similar. Lots of them are raised and comfortable. Best wishes.

ThreeTree

Flashlight, thank you. Wow, I hope your arm improves quickly - and it happened just from you doing something relatively normal or routine!

I sleep on my back, because either side causes trouble. The left side bothers the lymphedema - the right side used to hurt because of the port (out now), but now either side also aggravates my shortened (from radiation I understand) chest muscles and they hurt and spasm a good part of the next day if I sleep on my side at all. Some have told me I have costochondritis now from all the treatment. I used to be a real side sleeper and I miss it terribly, but ...

I do wonder if a real bed wouldn't help, but my letrozole brain just can't get focused and organized enough these days to really do anything more than what's just immediately at hand (work, walk, laundry, meals, etc.). I'll look up the Aerobed; I'd never heard of it before.

MinusTwo

Actually if you're sleeping on your back, a recliner might help even more short term.

Ask your LEPTs about the Bellisse bra. It's the gold standard for breast & truncal LE. I wear that when I'm traveling. Daily I use a Sydney bra from WearEase and I wear it 24/7. Luckily it's quite comfortable but still allows me to wear my normal clothes.

https://www.wearease.com/products/sydney-bra?varia...

ThreeTree

Minus Two - Really appreciate the bra ideas. I'll check them out. I have yet to find any bra that is comfortable, but I also haven't tried real hard.

I know some sleep in recliners and really like it, but for me right now, it would be as much work and as overwhelming as getting a new bed and/or couch. I do think about getting a recliner from time to time; I've never had one before.

Rah2464

ThreeTree ugh I hear you about the lack of motivation due to the meds. Wish I was near you and could help you unpack some of those boxes. Hugs and hope you can get some relief on the fluid buildup. I agree with Minus that a recliner might be just the ticket for a while. That slight bit of elevation might be just the ticket for your torso.

ThreeTree

Hi Rah - What a nice thought that if you were close, you would help me unpack boxes! I'm sure we'd have a nice time together. I actually hired a couple of ladies who helped me pack up the old place and we worked well together - it also motivated me to do much more; just having the others working around me. That's motivating in itself. The movers who I also had to hire, just stacked everything in the living room area here where a couch and/or recliner would go, so not only am I not motivated thanks to the drugs, but there is also simply no space. I'd hire the two ladies back to help me get situated here, but Covid hit and with that plus cancer comes financial uncertainty too, so I think I'm just stuck for now. Someday, someway, I'll make an improvement. I am even in my same old apartment building - just moved one floor down to a smaller place. I had the option to move back to my old one once they finished renovating it, but they raised the rent quite a bit. That combined with having to go through the whole moving process again, just turned me off on the idea of moving back.

I do have a wedge pillow that I use on the cot, and I put a pillow under my knees, so that has all seemed to help too. I think I just need Covid to go away and to get my mojo back, which could take years since I'm pretty sure it's the AI. It would help re moving boxes around if I had working chest muscles too (they removed a lot of my pectoral muscle on one side, because the tumor was stuck to it). Radiation made the whole area real tight too, and even with exercises it all just doesn't "work" when I want to do things like lift boxes, bend over inside them, carry things, etc. I can do it for about 5 minutes and then poop out and get muscle spasms. What a huge change from before and after treatment!

I'm whining, thanks for listening!

Rah2464

Three Tree glad the wedge pillow and knee pillow are helping. I hope you can access some lymphatic massage therapy services in your area. We have a Cancer Support Community that provides I think four sessions to cancer patients. Perhaps something like that is available near you. Hugs

ThreeTree

Thank you so much, Rah - hugs back!

Hockyparnt

I have the exact same problem. I had to stop wearing my sleeve and I now wear shapewear as compression for the breast and back and I get regular lymphatic massage and it has worked for me. Hope this helps.

ThreeTree

Hockyparnt - Thanks so much for the information. It is helpful. I did recently get a referral to the OT from my surgeon, and am just having a little trouble scheduling, but it will happen. I think she will do some massage, and then I can talk to her about alternatives to this sleeve too. I don't know if it's just not sized right, or if I just need something more; like the bras and shapewear that you have suggested.

cowgal

MinusTwo - Does the Sydney bra provide good support in the breast area

MinusTwo

Cowgal - I answered your PM. Sorry I didn't see this sooner.

Rah2464

My many thanks to whomever posted about that Sydney bra from WearEase - its a lifesaver! I think I am also going to investigate the short sleeved top that has the axilla pad. Sometimes all that flares up in my armpit and I need something to put a little pressure on there.

MCFran

Threetree. hey, how it goes? I hope that you found a massage therapy service. As said above, try to use a wedge pillow, it was helpful for my wife. Hugs and all the best!

7of9

thanks for discussion. Having similar issues plus a salivary stone that won't flush out. This damn disease hasn't been active in 5 yrs but seems only content when scaring or reminding me its aftermath will always be here. Grrrr