CSN Login
Members Online: 15

Lymphadema

SUNGRANNY
Posts: 71
Joined: Dec 2012

Hello Ladies,

Wondering if others have/had lymphadema, how troubling is it, and what you do to relieve the symptoms.

I asked about lymphadema before my surgery - total hysterectomy with some lymph nodes removed.  The surgeon told me that it does occur, but not frequently.

Before discharge a lymphadema OT came by to talk with us and gave us information.  4 months after the surgery, after the 4th chemotherapy treatment my right leg was swelling and my ached.  When I called the nurse to see if I needed to see the oncologist, she said I would be referred to a PT oncologist who specializes in lymphadema, that this was a "common occurrence." 

I was evaluated, and today had a first treatment.  I was surprised to learn that I have lymphaema in my leg (not too serious), in my abdomen, and genitalia.  I had NO idea that it might occur in my abdomen or pubic area.  Apparently it relates to urinary leakage, and explains some of my abdominal discomfort.  The PT was wonderful.  She did lymph massage, and discussed possible treatments and equipment: compression pantyhose or wraps, and if insurance will cover, equipment that will massage my leg, abdomen and genital area - would need to be used an hour daily.  I was told to avoid cuts, BP checks, IV, or injections on my legs (which sometimes happens), told to watch sodium intake, and to walk daily.  I'll have twice weekly treatments for the next few weeks.  Later on we'll work on Urinary Incontinence issues.

While I appreciate the wonderful Physical Therapist, I'm reeling.  Yet another "new normal", with treatments that I'll need to do daily from now on, and a list of cautions. 

After surgery I was discharged with a prescription for daily lovenox shots for 30 days, to administer in my abdomen to prevent potential bloodclots.  Now I find out that this might have caused to abdominal lymphadema. 

I've been having acupuncture treatments, but now they recommend that I not have needles inserted below the waist.  Oh dear...

Do many of you have lymphadema?  What treatments and interventions do you use?  Are they helpful? Do you use nutritional or any other interventions?

I appreciate any feedback.

Thanks,

Sungranny.

 

 

ConnieSW's picture
ConnieSW
Posts: 536
Joined: Jun 2012

I don't have lymph edema but have been concerned about preventing it.  The arthritis in my left knee has been acting up the past fewdays and I've been wondering if it's ok to wear my knee brace so I can continue taking  walks.  Also, (don'tlaugh) I wonder if it issafe to wear spanx on the rare (like once or twice a year) occasions I want to look my very best.  I will be looking forward to feedback also.

cleo
Posts: 121
Joined: Sep 2009

I have L leg lymphedema after 3/4 cancer treatment 5.5 years ago.  You must self massage daily. I did half an hour morning and night without fail for three years and the leg was fine.  Started to slip back and get casual and am now reaping the results....jeans that are a size too large for the backside to accommodate my thigh!!!  I have always worn a compression stocking during the day.  When living handy to a pool I found 'water walking' to be very effective and a sociable activity.     I live in Australasia where massage equipment is not allowed as it is considered to cause more harm than good.   Good  luck.

susangr
Posts: 58
Joined: Oct 2010

I have lymphedema of my right leg and it does effect the trunk right up to the axilla. Got it 3 months post hyst with 22 lymph nodes removed and pelvic radiation. If you type lymphedema into the search engine on this site you should be able to pull up quite a few posts. You can get 30 plus years out so everyone should be watchful of it. It generally does not go away but is "managed" by lymph massage, wearing compression stocking on affected limb, elevation, wrapping with short stretch compression wraps during periods of time when it gets worse and using specially designed compression pumps such as the flexitouch for 1-2 hours per night especially during flare ups. There is a national Lymphedema association that is worth belonging to that is trying to get lymphedema supplies covered by insurance. Some insurance companies cover some and others not at all. Many docs don't recognize lymphedema at all even though it is very prevalent. When it occurs you should be seen right away. First to rule out a DVT (deep vein thrombosis or clot) which should NOT be treated with massage or compression hose. Second so you can get referred to a registered lymph edema massage specialist who can help support you when your leg flares up and can teach you self massage and wrapping techniques. Some other things you should do. No hot baths or hot tubs, walk with compression hose on and swim with hose off to help move the lymph, drink plenty of water to liquefy the lymph fluid which is a thick protein, avoid needle sticks on affected side, bug bites, injury to limb, sun burns, stay out of heat, elevate leg, don't wear compression stocking to bed, avoid undies with elastic legs (boy shorts better), wear full body Spanx type garments and compression stockings when flying. Get up frequently and move around. May need to buy a size larger so not too binding, etc.... Try not to gain too much weight and avoid too much salt. Try not to get affected limb too tired. Some of the major cancer centers are starting to experiment with micro vascular surgery but legs which are 3xs bigger than arms and for the most part in the dependent position are much more difficult to treat. Results not great yet and not covered by insurance for the most part. Having lymphedema of the leg is no walk in the park but unfortunately it is a frequent complication of cancer treatment and more likely to occur with combined surgery, lymph node dissection and radiation. There are some other good resources on the Web too. Sincerely Susan  I'd 

 

 

SUNGRANNY
Posts: 71
Joined: Dec 2012

Thanks ConnieSW, cleo, and Susangr,  Responses and support like yours is part of what

makes this forum so special.  When I felt overwhelmed by the Lymphademia diagnosis I thought about coming to the forum for support, information, and validation. 

Many, many thanks, 

Sungranny

butebird
Posts: 4
Joined: Apr 2013

Hello, I'm just over 3 years post op for womb/uterine cancer. I wasn't told anything about any side effects! Cry

I have recently developed lymphoedema, but my GP (I am in UK) doesn;t seem all that concerned about it.

I am keeping an eye on it and have been researching it myself. I massage my legs twice a day with coconut oil and do feet excercises if I am sat down for long periods.

 

butebird
Posts: 4
Joined: Apr 2013

Hello, I'm just over 3 years post op for womb/uterine cancer. I wasn't told anything about any side effects! Cry

I have recently developed lymphoedema, but my GP (I am in UK) doesn;t seem all that concerned about it.

I am keeping an eye on it and have been researching it myself. I massage my legs twice a day with coconut oil and do feet excercises if I am sat down for long periods.

 

butebird
Posts: 4
Joined: Apr 2013

Hello, I'm just over 3 years post op for womb/uterine cancer. I wasn't told anything about any side effects! Cry

I have recently developed lymphoedema, but my GP (I am in UK) doesn;t seem all that concerned about it.

I am keeping an eye on it and have been researching it myself. I massage my legs twice a day with coconut oil and do feet excercises if I am sat down for long periods.

 

cleo
Posts: 121
Joined: Sep 2009

I would ask your Dr to refer you to a lymphedema specialist as incorrect pressure can cause more harm than good and correct massage involves the whole body in order that you get the optimum results.

nancibee's picture
nancibee
Posts: 48
Joined: Sep 2012

Cleo,

 

I totally agree. The class instructor demonstrated the technique. It is the lightest touch that can barely be felt. Also has to be in the right direction. Members of the class received handouts that were specific to where we had had our nodes removed. Mine is for lymphnode dissection fromn pelvis or both legs. Kaiser also has DVDs I can check out any time. I also received a handout "Exercises for Edema of the Leg"

If anyone wants me to scan pdf files and send contact me through private email.

 

nancibee's picture
nancibee
Posts: 48
Joined: Sep 2012

No one informed me about the risk of lymphedema after my radical hysterectomy but I have spoken to breast cancer patients who are treated where I am and they were informed. So not sure why. I was sent home after a difficult time in the recovery room with instructions to take all of my medications as normal. These included injecting myself with a 1 1/4 inch needle into my thigh muscle. I happened across the word lymphedema on the Hystersisters board and immediately panicked. I contacted member services and had a phone appointment with the certified lymphedema specialist who also set me up to attend the class.

In the class, it seemed like it was necessary to live in a bubble to avoid lymphedema. No walking barefoot on the beach, no thorn pricks, don't get sunburned but be carefuo of UV protectants (use physical blockers instead). No underwire bras or tight clothing. I was very discouraged. I am an avid outdoors hiker, love walking on the beaches and expose my skin to poison oak and sun at least weekly. I also don't have time to massage myself.

While in chemo, I expressed my frustration to one of the nurses who told me that she felt that way too after breast cancer surgery, but said I would get past it. She was right. I continue to do my normal activities as much as possible. I have switched to baby sunblock and of course avoid scratches and insect bites and bee stings.  I use fragrence free body lotions (not unscented). I have also, with the approval of my neurologist stopped giving myself my injections.

If anyone is worried about lymphedema, she should see if her medical care provider offers a lymphedema class.

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network