Early stage lymphoedema

unicorn3

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 around
ive 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 anastrozole
Thanks and have a great day 🙂

Afraser

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. 

unicorn3

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

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. 

Paris_24

@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!

GinGin

@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. 

GinGin

By the way, there are compression sleeve for night as well. I wore my night compression sleeve when I was on holidays and rarely wore my day compression sleeve during my holidays. 

GorgyS

I have been managing my lymphedema by wearing a compression sleeve daily for a minimum of 10 hours. I also participate in an exercise program with individual support. Over the next three months, I will attend a group session to learn how to massage my arm. Every six weeks, I have an appointment with a lymphedema therapist at the hospital, who mentioned that the condition could be reversed if I consistently wear my sleeve every day. Managing lymphedema is just another part of this 'breast cancer project.' I believe this is the way forward, whether it's pleasant or not. I am also thinking to go with a night compression sleeve instead of daily. Something that I am going to discuss with my lymphedema therapist at my next appointment. 

unicorn3

Thanks everyone for your insights 

Yes I think it is the sub clinical type @GinGin so I’ll press on with the exercises and keep in the back of my mind that maybe a temporary sleeve may be needed but cross everything that I don’t.  

The numbers have been fine the whole time even through radiation it’s only just between this visit and the last one 2 months ago and the only change I can think of is I got lazy with exercises and I started hormone tablets.  Just another bump in this crazy road I guess. 

Coastiejas

Hi @unicorn3
I've had a lumpectomy and axillary clearance too. I have a compression sleeve and bra. The sleeve reduced my sozo reading dramatically after I started to wear it and the compression bra too. It is hot in the summer but worth it.... it's pretty unobtrusive as mine is skin colour. I also find qigong helpful for both my lymphoedema and it's pretty much got rid of my cording. Look good feel better have some online sessions lgfb.org.au. 
Best wishes for your treatment! 

unicorn3

Thanks @Coastiejas. It looks like from what I’ve been reading a sleeve might be the way to reduce this, I’ll be prepared for that possibility at my next appointment. 

I know I should be more thankful but it’s hard sometimes when I just feel so old some days and all the mums at school have two boobs and long hair I’m only 48 and I just don’t love the person see in the mirror right now but I need to give myself a good shake and carry on and be grateful that I have got through chemo, surgery , radiation, immunotherapy and now hormone treatments all with fairly minimal side effects and a complete response to chemo even before surgery the cancer was all gone. 

Wishing you all a happy week ahead 

iserbrown

@unicorn3
Natural feelings of frustration of what you've been through!
In time acceptance comes and you can look forward to each day knowing you've beat the mongrel called BC!
Take care

unicorn3

Thankyou @iserbrown. I look forward to that day and many more years ahead 

Coastiejas

Hi @unicorn3
I know what you mean about how unfair this all is! I'm 50 and often get cranky about everything that we have gone through when I see others who are blissfully unaware.... I  think we are entitled to feel how ever we want after all of that! But as you say we have to pick ourselves up and dust ourselves off and be really thankful for the amazing treatment that's out there and think of all the other warrior women who have been through this too and will go through it after us! I see it as a gift as now, I have a new perspective and nothing phases me when I compare it to what I have been through with treatment. I have stayed positive right through the whole process.... and tried to look at the positive side... after all a frown turned upside down is a smile!
I hope you have a great week ahead too!