Lymphedema

[Dess1226]

Hi ladies any one of you had or having lymphedema problem after lymph nodes were removed as I am having swelling of the right leg esp ankles and feet after surgery and chemo because of clear cell last year.

[delia2]

I know some people on here have had severe lymphedema. I have started to get it in my ankles and feet 2 months after frontline. I hate it. I may have it in my whole legs but it’s harder to tell. I’ve been wearing compress socks and seeing my onc next week. I hate the idea of wearing the socks or stockings through the summer. The lymphedema combined with neuropathy is quite painful at times. Have you talked to your doctor about it?

[Katmal-UK in reply to delia2]

Hi Delia, my ankles swell daily, Ive mentioned it to hospital but I think because its not painful just unsightly tbh Ive not followed up having it looked at, probably because I doubt theres much can be done x

[delia2 in reply to Katmal-UK]

Hi. I could live with what I've got now but am scared about its getting worse in a way that would impede mobility. I can't find too much information about it online--there's much more for breast cancer survivors who have it in the arm.

[Katmal-UK in reply to delia2]

Hi Delia. To be perfectly honest mine hasnt got worse. some days my ankles ache but they dont really impede my mobility. I keep saying im going to get them looked at .... maybe one day x

[delia2 in reply to Katmal-UK]

I know what you mean--it's not a high priority compared to everything else!

[Hidden in reply to delia2]

Hi Delia, I had lymphedema after removal of some lymph nodes during my TAH and chemo. 18 months later, I am not as swollen, and most days have no impediment to walking or doing whatever I have to do. At night the pins and needles feeling as well as the restless leg make for a challenge as I try to fall asleep (in a pool of damp sheets as intense hot flashes continue) and at times the feelings can be quite painful, though the intensity does not last long. Compression socks help and so do long hot baths with Epsom Salts. Doctors offer nothing other than lyrica or gabapentin (nerve blockers used for other purposes including diabetic neuropathy). I don't have any experience with either, but it's an option.

I figure I already walked through h&ll, so I might as well keep walking!

Wishing you the best.

[delia2 in reply to Hidden]

Thank you-it's hopeful to know that this can improve over time. I keep going with long walks despite everything but I'm always afraid it will get worse. I'm going to try acupuncture.

[xquizit01 in reply to Hidden]

Please try drinking 16 oz. of organic celery juice on an empty stomach first thing in the morning. I've been doing this daily and my hot flashes are gone. I use to get them hourly morning and night. Three days after doing this they were gone.

[Quiggs1982]

I also have lymphedema in my left leg (mostly my foot) and abdomen. It started about halfway through chemo. Compression stockings are a must for me, and I have a Flexitouch machine that I do everyday to help. It's under control for the most part, but does flare up worse in hot weather.

[Katmal-UK in reply to Quiggs1982]

Hi Ive not heard of a Flexitouch machine , might look into that, thanks xx Kathy xx

[Thinkerbell]

Hi, I have some lymphoedeme on my legs after ovarian cancer operation (which included the removal of some lymph nodes), I was told lymphoedeme was not common when lymph nodes from around the groin weren't touched but despite that was my case I have swelling of the legs, ankles and feet in both legs, though the worst one is the left one. I have a chat with my nurse specialist and she referred me to the lymphoedeme clinic where they measured my legs and gave me the stocking prescription, also explained me the care I do need to follow in order to keep it under control. I really suggest you to go ahead with talking with your nurse specialist and get some help with the lymphoedeme, it is true there is not cure for it (at the moment), but if one takes proper care and wear the stocking during the times of crisis and pain the condition can be managed. I have had the situation managed for over a year and I attend regular meetings where they measure my legs and so we have a record of how the swelling is going on. Remember, the faster we take action the quicker we will get help and a solution. Good luck!

[bamboo89]

For anyone suffering lymphoedema in the legs which responds to compression, I highly recommend Mediven compression stockings or tights. I don't actually like the tights, I find them uncomfortable round the waist, so I use the Mediven Elegance stockings with a top band, like hold ups. They are available on the NHS, but not always prescribed, so you may have to ask for them specifically - they often dish out cheaper makes such as Scholl. I've had to wear them for the last 8 years all day, and yes, I hate 'em in the summer, they're hot, but the tights are even hotter to wear. After my OC surgery, my legs were so swollen I could barely walk - I couldn't wait to get home and start using my own stockings again, those calf length socks they give you are useless; on arriving home, I actually kept the stockings on all night as well for a week, till the swelling was under control. I have oedema in the legs from post thrombotic syndrome, having had so many DVTs down the years, but I did notice the swelling is worse on the left ankle than it was prior to remove of a lymph node or three in the groin. Luckily, the stockings help with that too...