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Pink dalhia
15 Posts
Hi everyone.

question about peoples experience with lymphedema.

I had bilateral/ double mastectomy with 13 lymph nodes removed on one side.
I’m 5 months post op and so far thank fully no issues.
will be doing radiation soon once chemo is done and long term want to return back to daily cardio / exercising (age 39).

should I look at getting a sleeve now and have on hand for radiation?
do people use it for exercising all the time or just when they have issues?

thoughts? Comments? Suggestions?
12 Replies
195 Posts

@Pink dalhia My lymphedema started about 6 months after surgery when I was getting back to doing physical things. The first time I really knew something was amiss was one day mowing the lawn and my arm started to hurt. When I came inside after finishing and had a look at my arm in the mirror, it was swelling slightly underneath my bicep. I wear a sleeve most days now as it keeps the pain down. Knowing what I know now, my suggestion would be to get a 20-30 compression sleeve and wear it while doing anything physical. You can get a prescription from your Dr and the cost will go on your Pharmacare, anything not paid for can be claimed on income tax as a medical deduction.

2182 Posts

Hi @Pink dalhia

My situation was very similar to yours. Chemo, double mastectomy + 25 lymph nodes removed (right side), then radiation. I noticed extreme discomfort in my arm about half way thru radiation. It wasn't till I finished radiation that I noticed minor swelling in right side of torso and underside of right upper arm above the elbow.

I'm in Ontario. Here you can't just “get a sleeve” unless prescribed one. Heck, I was told not to get a sleeve as a preventative measure, as it may actually cause lymphedema.

My oncologist wrote a prescription for me. And then I still had to go to a licenced fitter who measured and made the recommendation of compression grade. And then off to a supplier who is licensed to sell this medical equipment. And, if you want funding or reimbursement for the sleeves needed (and gauntlets, gloves) - in Ontario it's the Assisted Device Program- you have to fill out more forms and get them signed by a doctor and the ADP Authorizer.

So a bit of an ordeal. Don't know if it would be the same in BC.

I found this link for the BC Lymphedema Association which may be helpful? I believe their site may also have a list of licensed specialists, from fitters to CDT therapists.

BC Lymphedema Association - Diagnosis Assessment or Monitoring

I hope you don't develop lymphedema, but it's great your doing your research now! Good luck with radiation!

76 Posts

Hi @Pink dahlia,

The info about BC Lymphedema Association is good. It's always good to prevent lymphedema, because being a chronic condition, once you've got it, there is no cure. Being proactive and getting a sleeve is a good idea. After my surgery (mastectomy with axillary lymph node dissection), I preventatively started wearing a compression sleeve, so when I started back to exercising including strength training, I was already used to wearing one. A compression sleeve (unless specially designed for nighttime wear) should be worn all day, every day, taking it off to sleep.

6 Posts

@Pink dalhia - I was nervous after reading your post. I had my surgery on October 20, 2021 which include a lumpectomy and axillary node dissection (10 lymph nodes removed). I was so nervous about getting lymphedema and watched carefully during November and throughout my 20 radiation treatments which ended 2 ½ weeks ago. Once I finished radiation without any signs of lymphedema, I thought that I was home free. Now I see that you developed lymphedema 6 months after surgery. Yikes!

@JustJan - I am very new to this forum having just signed up last week. I haven't spent much time navigating the posts or website yet, but I noticed (based on 3 of your Posts) that you seem wise and knowledgeable, and your recommendations are consistent with what I would have posted. Just curious if you have any knowledge about how long someone is at risk of lymphedema post-surgery?

1728 Posts

@CCK I'm afraid I don't have any information on lymphadema. It was never an issue for me. I am going to tag @cancertakesflight to see if she might be able to help.

64 Posts

Have you tried lymphatic drainage? I was recommended to one from our cancer center and only had to go to her twice . I now do it daily at home for preventative. I’m sure you can find videos on utube. Good luck.

195 Posts

@CCK You can develop lymphedema 20 years later. The risk never goes away, so something to always be aware of.

195 Posts

Lots of good info on Lymphedivas.com They have a downloadable lymphedema guide at the very bottom of their home page. I have ordered many sleeves and gauntlets from them, they are a great company to deal with and even though I order direct from them I still submit my receipts as medical deductions for income tax. My accountant says they are for sure allowed as they are medical garments. They also have some terrific sales that I watch for. They send an email before every sale.

6 Posts

@DMT - Thanks for your note and this info. Not what I was hoping to hear, but good to know.

83 Posts
Hi there,
I am 5 years out from (R) lumpectomy
with removal of 11 nodes. I always get my sleeves each year as allowed by my insurance. I do wear them for heavy lifting. I have no lymphedema… like, at all. I use YouTube to find exercises specifically for prevention and I do daily stretching (every time it pops into my head during the day). I do self massage… it’s very very gentle…almost like tickling my neck-shoulder-arm-chest-abdomen- groin. So far so good. I encourage normal activity to keep your arm in motion . Good luck.
116 Posts

Hi Pink dalhia! Manual Lymphatic Drainage was a life saver for me. I had DMX in 2016 and just after surgery starting getting MLD. Find a RMT or other professional trained in it. I got my mobility back very quickly and never had lymphedema.

8 Posts

There is a lymphedema information zoom session at inspire health, I think usually once a month. Inspire health is A great resource! Sign up and you will have access to consultations from doctors, dieticians, physical exercise trainers and much more…..all free or by donation.

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