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Abdominal Lymphedema

Donna M
Posts: 25
Joined: Jul 2010

I can't be normal and get lymphedema in my ankles legs or feet, I got in my abdomen. What next, or should I even ask?!!!

DrienneB
Posts: 11
Joined: Aug 2013

I have it in my abdomen, back side, thigh, calve, ankle, foot. I had 58 lymph nodes removed from my pelvis for uterine cancer. All apeared negative of cancer. Not long after I finshed chemo, I wondered why my girth was so big around and why my backside developed what appeared to be rolls of fat above my buttocks. I learned after I go to a therapist for the leg swelling. It's depreseing, I know, if you're used to staying thin and fit. I had to ask my surgeon about it and she was dismissive, as if it wasn't really a problem. i got the referral from another doctor.

nicotianna
Posts: 79
Joined: Oct 2013

Hi Donna M -  Can you provide more details?  I had an episode during my treatment of XRT & chemo for AC IIIb.

Nicotianna

 

Marynb
Posts: 1134
Joined: Aug 2012

After treatment, I had another cancer and abdominal surgery with removal of lymph nodes. I also get swelling in the abdomen. My cancer support group told me it was probably lymphodema. I am otherwise, thin. My doctors said it was not possible and totally dismissed it?????????? Is there anything that can be done about it?

sandysp's picture
sandysp
Posts: 811
Joined: May 2011

I am continually monitered for Pelvic Lymphedema at Memorial Sloan Kettering's Rehabilitation Division. 

The swelling of the leg(s) is actually from the failure of the Pelvic region nodes. There is nothing wrong with my legs except that they can't get the fluids by the groin nodes which are not working, neither are nodes in the pelvic region so the fluid backs up into the ankles and calves, causing much pain and heaviness in the legs.

I found that I suffered from Primary and now secondary lymphedema. This pelvic type lymphedema is called a "devastating diagnosis" This I was sorry to hear when I went on the National Lymphedema Association website.

Please do no ignore any signs that could be Lymphedema. One of my doctors looked casually at my legs and said out loud while he noted in his computer which he mostly looked at anyway "no sign of lymphedema". I told him I have it and that I was diagnosed by a Lymphedema Therapist at MSKCC who went where "none but the brave dare to go:-) My Pelvic PT was also a certified Lymphedema specialist trained to make the diagnosis. But I was seen by many therapists and my Physiologist there before they told me I definitely had it. 

One reason was because it was so darn depressing and we have to keep it together to do the type of self care we need to give ourselves to keep it at the stage we are in. Unlike my cancer which was stage 3, I am a stage 1 Lymphedema person.

I have been diagnosed with CVID. An autoimmune disease that causes problems like cancer and lung disfunction. It also can cause Primary Lymphedema. I never tested positive for HPV. CVID has been linked to cervical cancer, which I had. I believe there is also a connection to my anal cancer. 

I actually feel relieved to have been diagnosed. Finally I am being seen by a Pulmonologist who specializes in autoimmune illnesses instead of my acute care Pulmonologist, who, I swear am beginning to suspect he knew more than he revealed and just waited for me to get sicker.

I feel angry about this. I was born with CVID and didn't get diagnosed until I am 64 and lost my hearing on one side.

I guess I just have to be grateful the treatments I am getting now are better than the routes being taken in my past to contain an immune system going completely amuck.

Sincerely,

Sandy

 

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