Abdominal Lymphedema

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

Nicotianna

Marynb said:

Donna
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?

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

Sandra72 said:

I had a radical hysterectomy for cervical cancer lympodemia??

Please help....  I am scared...  How do I know if the swelling is from lympodemia?   it is in my lower abdomen and the past couple of days it got so bad as far as discomfort pressure pain....   It felt like I had a baby putting pressure down there almost the tightness of a contraction with an epideral....   My Dr had said that I could get this  but doesnt seem to feel its a big deal...  Does Lympodema kill you or make your life shorter?  Yes I have been on google.  What can I do to help with the lymphodema ?  My Dr suggested massage from the outside straight in and then up..  I need more instruction that that.   I am just scared can anyone relate?     My RH was  Oct 15  2019   

Hi,

 I'm curious, did you also have any radiation? Gosh, I'm so sorry you are dealing with this now too!! I think lymphedema sadly is not an uncommon side effect of both surgery and radiation and also often somewhat dismissed by some doctors unless extreme. I had surgery, pelvic radiation, and chemo for anal cancer involving lymph nodes in my groin as well, over 9 years ago. Early on after treatment I asked my doctor about what I assumed to be minor lymphedema in my pelvis (area below my belly button sort of pubic zone)...he seemed just a little unsure but referred me to a physical therapist who agreed. My case was (isn't, as I still have it) bad and it did improve some in time but the therapist recommended compression garments. I found that compression shorts (like biker-ish style) or even control top pantyhose really help. A pelvic physical therapist can teach you the right way to massage the area yourself to increase lymph fluid movement that due to surgery has likely become restricted. I've also read that Acupuncture can do wonders for lymphedema though I've never gone that route myself. Lymphedema can come soon after or months after surgery so it makes sense that that might be what it is, however, the pain you describe could be something else. Don't let your mind play tricks on you...I always feel best even if the news is not what I like, but to have answers from my doctor. If you don't feel completely satisfied with the answer you have, please seek another opinion. You deserve it!!

Good luck to you, I will have you in my thoughts for answers, health, and healing.

katheryn