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Lymphedema
Survived99
99 Posts

Hi all - I'm looking to connect with people or to start a discussion thread on lymphedema. I am a long term survivor who is just now dealing with this difficult side effect of treatment.

18 Replies
supersu
577 Posts

good morning @Survived99

great question….I did a key word search and it seems like these members have been part of discussions that contained ‘lymphedema’ - perhaps they have some insight:

@DMT, @Buffythevampire, @ACH2015

I also looked outside our community and found this listing of Lymphedema groups across Canada.


it seems as tho there is a virtual conference Dec 3 & 4, and the patient portion on Saturday is open for registration.

good luck with making connections - from what I know this is an extremely uncomfortable condition - my heart goes out to you and anyone else suffering.
how are you coping so far?

cheers
su

#lymphedema

Good topic. Fortunately lymphedema hasn't been a concern so far. I have been wearing bracelets when I leave my house that says “ no bp or needles this arm”. I point it out to the nurses when I need blood work done. The best deal that I found was on “Wish”. They were less then $2 a piece. I ended up giving one to an elderly lady in my complex. She previously had cancer and I remember her telling me a story about getting an IV put into the lymph node removed arm and it was quite painful.

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ACH2015
2198 Posts

@Survived99

This link from the CCS https://cancer.ca/en/treatments/side-effects/lymphedema discusses many facets of lymphedema.

Mine effects my left leg, groin and pelvis. After surgical removal of all left inguinal (groin) lymph nodes due to cancer, the fluid has no natural means to rid itself of the lymph fluid. I use compression stockings, shorts, lymphatic massage to manage and reduce the swelling. Breast cancer patients can develop this in their hands, arms, chest and armpit. Compression gloves, sleeves are the means to deal with this issue.

Get yourself set up with an assessment by a qualified lymphedema specialist to determine what means of control you can attain.

Thanks for the tag @supersu

Hope this helps.

ACH2015

Mee
68 Posts

Hi @Survived99

Great idea! @ACH2015 is correct. Before my cancer diagnosis and retirement, I used to be a lymphedema therapist. MLD (Manual Lymph Drainage) and compression garments are great methods for lymphedema management. You can get an MLD therapist to teach you how to do self-MLD; a precaution: if the MLD therapist that you go to doesn't start the MLD at your neck, then they don't know what they're doing. Since the lymphatic system ends at the neck (just below the collar bones on either side of the neck), and since the method of MLD is to drain the area of fluid that you want the excess fluid to flow into, then one must start at the neck to create a clear pathway for the excess lymph to flow into. It's almost like creating a vacuum to encourage lymph flow from swollen areas.

Mee
68 Posts

In my previous post, I mis-spoke (blame chemo brain). The lymphatic system ends ABOVE the collar bones on either side of the neck, not below them. Sorry about that!

DMT
142 Posts

Hi there @Survived99 ,

I had my surgery January 2019 and by the summer I realized I had a problem. It started with pain in my upper arm, no swelling. The pain in my upper side/back I had immediately after surgery so I thought that was post surgical pain. The first relief I felt was when I was trying on mastectomy bras and I tried on one that was all spandex, kind of like a sports bra. The pain relief was immediate, which made me start wondering why I had the pain. Shortly after that, I was mowing the lawn and felt my upper arm really start hurting. I discovered it was visibly swollen so then knew I had a problem! I pretty much need a compression sleeve and a bra that provides some compression or a compression camisole almost all the time. At least any time I am going to do anything other than sit quietly. I hate it. Really annoying and has changed my life.

Survived99
99 Posts

Thanks for the links!

I am a long term BC survivor and knew about lymphedema as I had 20 nodes removed. I didn't have any problem until I developed a cancer in my neck and had surgery to remove the tumour. That surgery removed my clavicle and my shoulder droops down - I think that is causing some of the problem.

I have gone to lymph specialists over the years and was wearing lymph sleeves but it was getting a lot worse after the operation. I have had MLD and CDT. The CDT - 8 weeks of 23 hours/day wrapping from the tip of my fingers to my shoulders - barely changed anything. I have been wearing custom sleeves and gloves (damn gloves are the worst!!!) since October. They are super expensive - $1100 per set. I end up paying about $100 as I am still working and the government pays some of the cost.

My issue is I'd love to talk to someone about their experiences. Get some practical advice rather than the standard Dr. Google stuff. Sometimes my hands look great, other times they swell like balloons. Is that normal? My arm looks like one of those poodle dogs they make out of balloons. 🙁 Should I re-wrap again? What triggers it? Can I go without the sleeve sometimes? Will that make it worse? What should I expect over the years? How should I measure whether it is getting bigger or not? When should I get MLD? Weekly? Occasionally? Why does my arm hurt sometimes? What are these tingly feelings, what do they mean?

It feels like no-one can give me information specific to me, they just talk in generalizations. I find that frustrating.

Lymphedema generally doesn't hurt, but it's frustrating and requires so much management and it really looks ugly and weird. When I was wrapped up for 8 weeks, people would stare or stop and ask what happened to my arm. Also the sleeves are ugly. Sorry for being Debbie Downer but this really sucks.

Dolphin
21 Posts

Hi @Survived99

I had some issues related to surgery for breast cancer , where a few lymph nodes were removed also; I experienced a little lymphedema and also something called cording; long tight strands of hard cord like tendons which create restriction.

I am in Toronto and was lucky to be recommended to a physio therapist who specializes in treatment of lymphedema for cancer patients. Toronto Physio is the name of the clinic. Lindsay, the therapist I saw, was amazing and so instrumental in helping to resolve the issues I had , and in my overall healing I believe. We laughed a lot too ! I went weekly for awhile , though it did cost, I really feel it was worth it. Lindsay not only worked on my body - arm, chest hands etc.., but also provided specific exercises and strategies to alleviate issues when they might arise, and she worked on scar tissue as well. It is amazing how well I have healed and how most issues are now gone. Knock on wood, I don't need to go much anymore, yet I miss our sessions as she really helped , and I felt so cared for. I would recommend , if possible , trying to find someone like Lindsay who is very experienced with Cancer patients and Lympadema.

The thing about Lindsay also, is she wasn't afraid to really work strongly on my body, which I welcomed: I was able to withstand some painful release work , which Cording demands , if you are to “break” them so that they are truly gone. Not for everyone I realize, but thought I would share this experience nonetheless. The hospital only gave me a pamphlet with a couple of exercises, which was not really helpful. Lindsay was the deal! I hope you can find someone who is skilled and attuned to what you need. Good luck!

DMT
142 Posts

@Survived99 There is a physiotherapist at the hospital here in Nanaimo that will put your arm in a machine to ‘milk’ the lymph where it is supposed to go. A friend of mine goes once a month to keep her swelling stable. Her swelling is really bad so wears a custom sleeve and glove. Apparently these machines can be purchased for home use if you don’t have access to one. she seldom has pain, when she does she takes her sleeve off to get some relief
I have virtually no swelling, mainly pain and tingling that is controlled with the sleeve and gauntlet. We are all so different. But anyone I know who has it is really frustrated with it! Me too!

DMT
142 Posts

@Survived99 I don’t have to go the custom route so am able to use the fun patterned sleeves from Lymphedivas.com Check their website and the measurements to see if you could use one of their sets. They do gloves and gauntlets too. Big sale on this weekend 30% off.

Mee
68 Posts

Hi again @Survived99

I can understand your frustration with your lymphedema. Unfortunately, lymphedema is a chronic condition and once it develops, it becomes a life-long condition that needs to be managed (no cure, unfortunately); the best solution is prevention. A certified MLD therapist should be able to consult with you one-on-one and answer all your questions and concerns. Each person's situation is different, so the therapist should be able to give you personalized answers and/or possible solutions. I realize that even what I am writing is “general” information and not personalized, but not having seen you or knowing anything about your lifestyle, it's difficult on a forum like this to personalize answers. Best of luck with finding a qualified therapist who can help you!

ACH2015
2198 Posts

@Survived99

My previous reply included my experience and a link with information. If you don't control the lymph fluid build up - and that means wearing compression sleeves and lymphatic massage - you will remain swollen and full. Exercise also helps to move the lymph fluid. My triggers for swelling are hear and humidity mostly.

So all I can offer is you need to control the swelling like we all do with lymphatic massage and compression garments. Some are luckier than others and pathways develop naturally. Another suggestion is to keep your clear fluid intake up and becoming dehydrated can contribute to fluid retention.

ACH2015

Survived99
99 Posts

Hi all

Thanks for all the advice. I guess it is a very personal journey. I have gone to Lindsay at Toronto Physiotherapy and have gone a few times to her other clinic on Yonge street.

I guess I'm just going to have to live with it as a consequence of my surgeries. It just is so frustrating that nothing works and my arm keeps getting bigger. 🤔

ACH2015
2198 Posts

@Survived99

What we are left with after treatments can become very wearing both mentally and physically. Lymphedema has become a daily part of my life since January 2017 when all the nodes were surgically removed.

Use the self lymph massage and use the garments regularly for a couple of weeks. You should see improvement, and if not - get reassessed to see if there are other unknown issues.

It sucks to be left with these issues after cancer, and believe me I “get it”.

Keep moving forward, and keep well.

ACH2015

Ineke
105 Posts

Hello, Survived99. I highly recommend Manual Lymphatic Drainage done by a Registered Massage Therapist (or some one that is certified to do it) as it was a game changer for me. I had BMX in 2016.

Survived99
99 Posts

Ineke:

Hello, Survived99. I highly recommend Manual Lymphatic Drainage done by a Registered Massage Therapist (or some one that is certified to do it) as it was a game changer for me. I had BMX in 2016.

Thanks. I have had MLD many times. How often do you do that? Weekly? Does it actually shrink the arm? My benefits pay for $500 of RMT time, which is not much.

@ACH2015 I had 8 weeks of compression therapy - arm wrapped 23 hours per day. It showed minimal changes and at my last compression sleeve fitting she told me that I'm getting bigger again. I wear a sleeve and glove (which goes up to my elbow) every day, all day.

At least when I was going through treatment people could give me hope. With lymphedema it seems like there is no hope, all this work is just to keep the dam from breaking so to speak. sigh Sorry to be Debi Downer.

Mee
68 Posts

Hi again @Survived99 ,

As previously mentioned, I was an MLD therapist (also RMT). In addition to physios, RMTs, OTs, RNs and other health professionals can train to be CDT/MLD therapists. As with all things, some therapists are better than others, so if you haven't been seeing good results with your present therapist, you might want to try another one. Being in the Toronto area, there are quite a few MLD therapists. Note that MLD is taught in all massage therapy schools in Ontario (just a very basic course of a few weeks) and this does NOT qualify an RMT to treat lymphedema; one must have specialized training. I was trained at the Vodder School of North America, which is the only school that requires recertification every other year (just saying). A couple of other options would be for you to purchase or rent a multi-chamber pump, which you can use in conjunction with your compression garments (even on a daily basis), and in addition to using the compression garments, put short-stretch bandages over top of your compression garment. Best of luck, and hang in there!

Ineke
105 Posts

Initially, I had 4 treatments in a 2 week time span, then weekly for another 4. It's so unfortunate that treatment for things like lymphedema are not covered by our medical. It should be when it coincides with cancer diagnosis and treatment. I hope that you can find some relief.

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