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123048 profile image
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Any information on lessening breast lymphodema, following axillary clearance would be gratefully appreciated. Helen

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123048
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Survivornow profile image
Survivornow

I suffered with lymphedema starting 5 months after my double mastectomy. I was never told about prevention, in fact I had to Google it to find out why my arm and hand were so swollen and ached badly. I found a lymphedema therapist who taught me how to gently massage out the fluid build up and use compression wraps and bandages. All patients who have lymph nodes removed should follow up with a lymphedema therapist and do the massage twice daily to prevent lymphedema (as well as follow all the directives on prevention - not lifting heavy objects, drinking plenty of water, getting enough sleep, reducing stress, diet - being overweight makes it more likely to trigger swelling - and getting exercise). Had I known about prevention, I most likely would not have had such a dramatic issue.

I do soft dry brushing twice a day, now, sometimes more if I'm aching.

obeautifulgirl profile image
obeautifulgirl in reply to Survivornow

Lymphedema appeared in my left arm during radiation after my mastectomy (3 years ago). I saw a lymphedema physical therapist right away; we got the swelling under control; and now I check in with her periodically. She praises me for being so faithful about wearing the compression sleeve and gantlet—every day (except maybe to a special event, like a wedding). Also she instructed me never to have blood draws or blood pressure readings on that arm.

I am so grateful to her. She is one of two lymphedema therapists in the Outpatient Physical Therapy Department at Virginia Hospital Center.

Arkait profile image
Arkait in reply to obeautifulgirl

Why do blood draws on that arms affect lymphodemia? I have had them recently and

my lymphdemia in that arm has suddenly worsened, so perhaps I made a mistake.

lynnhbtb profile image
lynnhbtb

I ended up with lymphedema after removal of 17 lymph nodes on the right. I went to a Pt who specializes in lymph drainage, massage and got the sleeves and even a pump for home use. My lymphedema acts up when I garden, do too much chopping or cutting, or when I used to ride my bike. I also had it more so in my back and trunk, and also could not get anyone to diagnose it for the longest time. You may also want to google KT tape or physio tape for lymph drainage. My PT used it on me and when it acts up, I"ll apply that. I do think prevention is the best way to keep it at bay. Once it flares it's harder to knock it down. Best of luck!

Hokie profile image
Hokie

Hi, just read your post. I had 19 nodes taken out of my right arm and 10 on the left. My surgeon told me my left arm is the only arm to get blood draws and blood checks on for now. NEVER let them draw blood on your affected side. Nor get shots on that arm. This can all cause lymphedema. I wear compression stockings on both my arms everyday. You can look at the web site, lymphadivas, they carry some great designs and are more breathable in the summer heat. Good luck, try to find a p.t. In your area that specializes in helping reduce the swelling.

obeautifulgirl profile image
obeautifulgirl

Dear Arkait: I’m not sure why it’s a bad idea to have blood draws on the lymphedema arm. Sometimes I really wish I’d gone to medical school—or at least paid attention in biology class!

Coincidentally, Just yesterday when I was being given a Zumeta infusion via IV—and the oncology nurses ALL tried and failed to insert it—I suggested that they use the lymphedema arm, maybe just this once? They were horrified at the thought! Never fool with that arm!

(I’ve have three or four Zumeta IVs with no problem.Now we are switching to the Zumeta injection, as soon as my oncologist sets it up with the insurance company. I am now classified by the oncology nurses as a “hard stick.”)

Julie2233 profile image
Julie2233 in reply to obeautifulgirl

It's a bad idea to have blood drawn from the affected arm in case of infection. Everytime the skin is broken there is a possibility of infection - that is also why we are told to keep the skin well moisturised, in case it dries and splits and lets in bacteria.

Infection is bad on 2 counts, initially it may lead to cellulitis, and the infection may also create scar tissue which can can cause a blockage and put a lymph system already under pressure under more pressure.

Even if you don't already have lymphoedema if you are at risk, a build up of scar tissue is thought to be a cause.

Like everything you might have a hundred needles in your affected/at risk arm without ill effect but you just need that one to cause problems - for me, I'm not prepared to take the risk.

obeautifulgirl profile image
obeautifulgirl in reply to Julie2233

Very clear and helpful, Julie. Thanks.

florriecat profile image
florriecat

Hi,

I just joined this site so only now read your message. I had right mastectomy and axillary node clearance in Jan 18. Did exercises as soon as possible after seroma was drained. Now get mild lymphedema if I dont exercise . I clear distant lymph nodes before gently massaging away from armpit towards other drainage, if you can towards lymph nodes by your clavicle. I have to go round my back and down my torso as my neck nodes suffered from radiotherapy, so I use a long handled very soft bath brush. General exercise like walking is good, anything that gets your system moving .

Also wanted to say if you can find a therapist who does scar work, it helped me a lot as freeing the adhesions from surgery helps restore some drainage. I also had some specialist acupuncture which was helpful.

If you've had complete node clearance from your armpit, you should avoid any damage or injury to that arm, whether from needles , Insect bites -i have to be careful gardening so wear heavy gloves and long sleeves - because it's easy to get infection if you haven't any lymph nodes to protect you. That's why you shouldn't offer your affected arm for blood work or BP cuff.

Lymphedema is another joy we have to manage. It's best to be proactive as soon as you suspect a drainage problem is developing, as it's much harder to manage once its developed.

Hope this helps. Best wishes x

123048 profile image
123048 in reply to florriecat

Hi, thank you so much for your reply, my lymphodema is in the left breast only. I did have axillary clearance and then radiotherapy, the scar is long and I cannot seem to find a method of massage to drain the fluid past the scar (which is like wire). My left breast is very much bigger than the right and often painful, the tape is the best remedy I have found, but think it may restrict flow coming in as opposed to flowing out. I will look for another therapist.

Kind regards Xx

florriecat profile image
florriecat in reply to 123048

Hi, sorry to hear you are having these problems.I found a lymphedema nurse specialist who was trained to do scar work, see online Restore Therapy, Sharon Wheelers Scar Work. This is a very gentle massage which stretches and breaks the adhesions caused by surgery, and this opens up drainage again. I think their website may list therapists by region. I also found a local physio who was similarly trained. It works on any scars, not just Mx and also helps with cording..

I would certainly recommend it - it helped my discomfort and once the adhesions are released, they don't seem to come back. Hope you find some relief. Quality of life after all we've been thru is so important. I think sometimes the surgeons and oncs don't realise how important that is.

Best wishes,

123048 profile image
123048 in reply to florriecat

Thank you so much, I will find someone.