Hi everyone. So I’ve just come back from one of my lymphoedema clinic appointments and they said my sozo measures and arm measurements were a bit high. I’ve been given some extra exercises and self lymph draining massage instructions to do but I was just wondering for anyone who has had reversed it fro this stage had any extra tips that I can do to maximise my chances of turning this aroundive got another appointment in 5 weeks and if it hasn’t changed they want to look at compression which I’m keen to avoid with the weather warming up I’m a busy mum of three and work from home on our own business too so there’s no time for gyms or yoga or anything like that, just looking for extra things I can incorporate into my already packed days. Appreciate any tips and tricks that you may have just for background I’ve had left side mastectomy, full auxiliary clearance, 3 weeks radiation and 16 rounds of chemotherapy all completed. Still doing immunotherapy and taking anastrozoleThanks and have a great day 🙂

I haven’t reversed my lymphoedema so I can’t answer that part but early lymphoedema can be turned around so while it’s hard in a packed day, try and keep up with exercises and massage. Elevation helps too. I have worn a compression sleeve for a long time. I have a good one, tailor made, and don’t live in an area of high humidity, so I have never found wearing it hot or uncomfortable. But the better the sleeve, the higher the cost it seems. In Victoria however you can get a significant rebate on a sleeve. I understand the wish to avoid one but warmer weather will only increase fluid retention. It’s the loss of lymph nodes in an axillary clearance that creates the problem. Good if you can turn it around, but with care lymphoedema can also be kept manageable and not disruptive. Best wishes.

Thankyou @Afraser. I think I got a bit slack with keeping up the exercises after radiation as I felt ok but I’ll definitely get back into them now. I’m already struggling with how I look with short hair and prosthetic breast so I didn’t want another thing to draw attention to me but I know it could be way worse.

Condolences! Most of us know how it feels! I had months of being bald and mono-boobed (still am the latter! Got used to it!) but like all things, it does pass. All going well, there will come a time when you find right now hard to remember. I leave my sleeve off sometimes, my arm is very stable so I know when I can ease off. But fingers crossed your lymphoedema is the short lived variety.

@unicorn3 I agree with Afraser even though it is a pain to wear and hot and going to get hotter, get onto it. Mine has flared up significantly a little because of chemo and other procedures over the past six weeks. It can be debilitating, my hand, fingers and forearm are worst and impacts daily activities, opening and chopping things. Physio and I have worked hard over past couple of weeks with full arm bandaging that delivered a slight reduction on the sozo. I am about to start radiation and in hindsight I would advocate prevention rather than treatment. There are a couple of lymphoedema podcasts on the BCNA website worth watching too. People can be rude and stare, it is hard going but you got this and you aren’t alone!

@unicorn3 Quite similar to you, I had left side lumpectomy, full axillary clearance, 15 rounds of chemo, 3 weeks of radiation.My base SOZO reading (before surgery in Aug 2023) was 1.1. After radiation ( Mar 2024), it shot all the way up to 11. I am now 4. I am considered having sub clinical lymphoedema which is reversible. Do you know if yours is sub clinical as well?I was given self lymphatic massage + exercises to do. My reading did not go down despite me doing them every day I was measured every two weeks by my physio therapist. I saw my physio every week for a month working diligently to reduce it as well. However, It only went down after my compression sleeve arrived and WHEN I started wearing it daily, so it appears to me, the compression sleeve have the best outcome.I have been slacked lately ( not wearing the compression sleeve daily). Need to get back to it so I can completely reverse/ eliminate it. My physiotherapist says it is possible but only if I’m wearing my sleeve daily.

Early stage lymphoedema | BCNA Online Network

13 Replies

Afraser
Member
7 months ago
Condolences! Most of us know how it feels! I had months of being bald and mono-boobed (still am the latter! Got used to it!) but like all things, it does pass. All going well, there will come a time when you find right now hard to remember. I leave my sleeve off sometimes, my arm is very stable so I know when I can ease off. But fingers crossed your lymphoedema is the short lived variety.
unicorn3
Member
7 months ago
Thankyou @Afraser. I think I got a bit slack with keeping up the exercises after radiation as I felt ok but I’ll definitely get back into them now.
I’m already struggling with how I look with short hair and prosthetic breast so I didn’t want another thing to draw attention to me but I know it could be way worse.
Afraser
Member
7 months ago
I haven’t reversed my lymphoedema so I can’t answer that part but early lymphoedema can be turned around so while it’s hard in a packed day, try and keep up with exercises and massage. Elevation helps too. I have worn a compression sleeve for a long time. I have a good one, tailor made, and don’t live in an area of high humidity, so I have never found wearing it hot or uncomfortable. But the better the sleeve, the higher the cost it seems. In Victoria however you can get a significant rebate on a sleeve. I understand the wish to avoid one but warmer weather will only increase fluid retention. It’s the loss of lymph nodes in an axillary clearance that creates the problem. Good if you can turn it around, but with care lymphoedema can also be kept manageable and not disruptive. Best wishes.

Forum Discussion

Early stage lymphoedema

13 Replies

Recent Discussions

Triple positive invasive lobular carcinoma

Covid jab

Triple Positive HER2+

Today was D Day

Alone in Melbourne newly diagnosed

Disclaimer:

Foundation partner	Major partners