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Lymphedema
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
DMT
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.

ashcon
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!

Mee
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.

CCK
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?

JustJan
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.

Viva
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.

DMT
195 Posts

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

DMT
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.

CCK
6 Posts

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

Goodtogo
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.
Ineke
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.

jad
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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