Truncal lymphoedema issues.

Gallgou64

Hi, bit of background. WLE 1sentinal node removed Sept 19 , triple neg, clear node. Chemo radio thereafter. Axillary cording resolved with self stretching. Very sore, ongoing, breast tissue, puffy...reassured normal post treatment aches by Onc and BN. Over winter last year had strange sensations over whole affected quarter of torso. Tingling, zinging, bruised feeling. Then after painting my sitting room I developed a Very specific pain ( like stitch, nagging, constant) in one area of upper right abdomen, relentless, Just off centre at Liver gallbladder area. US , scope CT scan in Feb 21 all clear. I then noticed i had very slight 'ripples' on my side and a 'Pouch' on my back. Long journey to finally get it 'acknowledged' as 'possible' 'Lymphoedema'. I attended a Private nurse lymphoedema specialist in May..I felt listened to and understood. Course of MLD , deep oscillation therapy, and she taught me a self care routine that I do mostly daily. The breast tissue pain has almost disappeared. I try stay hydrated, walk, gentle stretch exercise and swim daily. I Use variety of longline post surgery compression bras, sports bras and gentle compression vests with varying success 🙄.

Lately I think the compression has been irritating the specific 'stitch spot' on my abdomen (it's been more grumbling and achy like back in begining) but if I leave the compression off I feel the other truncal sensations worsen. I probably have put a little weight on 🤔..so wondered if this could be causing the blip in managing the lymphoedema. I know I should probably contact nurse again but in meantime wondered if anyone could reassure me re the sensations and discomfort I'm experiencing. The ripples on my side and the pouch on lower back is more evident today and I feel various sore/bruised spots on my back and side. I hate this grumbling ache, when that rears its head it puts me into that state of hyper vigilance and fear of recurrence. Any thoughts welcome !

Gallgou.

Binney4

Gallgou, welcome to the forum, though I'm sorry for the reason that brings you here. Definitely do catch up with your lymphedema therapist. But while you wait you can at least be assured that weight gain does affect lymphedema, and there are even studies that show that result. For me just a few pounds makes a noticeable difference in managing both the swelling and the discomfort. The flip side is that when you lose weight things improve, which is motivating even while it's frustrating. (After too many months of limited activity due to Covid restrictions I'm in the throes of trying to up the exercise and get my weight back down--grrrr!)

Can you switch off to a compression garment that doesn't irritate that spot? It sounds like you've experimented with a number of varieties, so maybe you still have one in the drawer that can help until you see your therapist.

Lymphedema flares are possible for any number of reasons: hot weather or being outside more in the heat; any unusual activity, such as moving furniture, lifting heavy items, new sports, overwork, painting the walls, etc.; travel that takes you to a different altitude (air pressure affects lymphedema). Fussy thing, this lymph system!

Do let us know what you discover and tell us how we can help!

Gentle hugs,
Binney

Gallgou64

Thanks Binney4, I found this site Feb/March and by browsing posts here I started to understand what was happening to me. So a big Thank You all. I would never have had confidence to keep going. I'd prob have accepted the dismissal of (one sided) swelling as weight gain. 🤔..! I still sometime wonder if it is lymphoedema because of the lack of any depth of knowledge my GP, Onc or BN had. But Specialist Lymphoedema Nurse reassured me I wasn't imagining it. I think I had had it for some time and accepted the 'post treatment discomfort' explanation 😕. The specific pain point in my diaphragm is situated directly below where my scar is. My tumor was quite deep situated mid line (I.e. nearer sternum side ) I think now it makes sense ....that point will actually be linked by nerves, connective tissue etc and if the Lymphoedema even slightly flares it causes pressure. I had a 'Mondors cord' recently, running down from the other side of my affected breast and that made me think ...that the treatment probably has damaged associated connective tissue around the diaphragm area. 🤔 Well that's what I would prefer it to be ....if that makes sense. 🙄

I'm experimenting with a more gentle elastane vest at minute and keeping fingers crossed. Trying to cut back on chocolate too. I think I've recently been feeling more (cautiously) normal and indulged my sweet tooth. Plus attending a few family occasions, in the garden, where nice food has been plentiful. Also I couldn't resist holding my 8 month old great niece who I've rarely seen because of Covid. So there are a few possibilities.

Good luck with your exercise regimen too.

Appreciate any thoughts on TENs machine for sore points??

Thanks again for taking time to listen and advise. It's obvious you have a wealth of experience and knowledge on this very misunderstood and ignored condition.

Gallgou0 X

Binney4

Gallgou, it definitely makes sense to prefer lymphedema to other possibilities--we're all with you on that!

TENS is a possibility, though if you try it do so very lightly, as an aid to pain relief rather than lymphedema control. A better option might be myofacial release, which can help to soften fibrotic areas and relieve the discomfort by allowing better lymphedema control. That'd be something to ask your lymphedema nurse about, as she may be able to set up a schedule for that with you. At any rate, it's unfortunately true that most of us with lymphedema have to deal with flares, not to mention with our own occasional lack of motivation to keep up the self-care routines that work.

Thanks for the good wishes for my new exercise endeavors. I prefer biking around the neighborhood, but I live in the desert and we're only now getting temperatures low enough to make outdoor exercise possible. Too easy to use even weather as an excuse!

Onward!
Binney