Fear and whining

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2/19/2011 9:56am
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Replies: 2

I am almost 1 year NED.  Feb. 25 will be the one year anniversary of when they removed the lymph nodes in my left groin.  Prior to that I had 2 surgeries to remove melanoma from the bottom of my left foot. I staged at IIIb.

I have been wearing a thigh-high compression garment since May, but I have a lot of fluid hanging around my abdomen.  It took me from November to February to get an appointment with a lymphatic therapist. She has been teaching me the self massage routine, actually my husband helps me too.  So, we have only been at this a short time. Last night I/we noticed a very tender area on my side a few inches below my armpit. With my arm in the right position, there is also a lump or hard area to be felt.

I am hoping that this is somehow related to the lymphedema and is not more melanoma. On the other hand, I'm not feeling quite as jubilant as I was about reaching the one year mark. I actually had planned to celebrate like it was a birthday or something because I feel like all the time that I have lived since the cancer was removed is a gift from God.  Even with all of the physical restrictions, I am glad to be alive. Now I am afraid that the cancer may be back. The only good thing is that in the next 2 weeks I already have appointments scheduled with all of the appropriate doctors, so it will get looked at several times.

Has anyone else had something similar happen?

Vermont_Donna - (2/19/2011 - 2:17pm)

Hi,

While nobody here can of course "diagnos this problem" and you have certainly have a good plan with going to the doctors, I am going to share a few things about lymphadema that I have learned. Its good that you are seeing a lymphadema specialist as they really know their stuff! Its amazing how much better the lymphadema can be after one session and after you do your own self massage. Always wear your stocking, first thing in the morning after you shower til when you go to bed. I have a nighttime lymphadema garment that is called a "solaris garment"...its thick and padded kind of like an oven mitt, that you slip your foot and leg into..it goes toes to groin, and there is foam rubber like material inside and lines stitched all along it and it is designed to press against your skin lightly and keep the lymph fluid draining and moving all night long. Kinda of like how the compression garment keeps the lymph fluid from draining back down your leg and pooling around your ankle and in your lower leg. Mine was custom made, my lymphadema specialist referred me to a specialist at a medical supply store who measured me for this and the compression stocking (garment) I have....I describe it further down below.

Ok heres the part that maybe you dont know about...when you have a lot of fluid and you are moving that, you must start from the TOP DOWN.....your self massage (and the lymphadema specialist hopefully) should start at your neck, and lightly rub those lymph nodes on the affected side, then move down to your collarbone, and lightly massage the lymph nodes there, then go to under your arm and massage those, then move to your hip and lightly stroke up to your arm pit, stroke up to your collarbone and up towards your neck THEN massage the groin lymph area and open that up, then go to your knee and with both hands lightly stroke up towards the groin and as the scar for the LND has interrupted lymph flow, when you stroke up towards the groin try to stroke around the scar, as if you are moving the fluid around the scar to the abdomen/side, after you have completed all sides of the thigh from the knee, go back to the hip/groin and stroke up your side, to your armpit, then up to the collarbone, neck etc (YOU ARE CLEARING YOUR LYMPH SYSTEM ALL THE WAY UP). Then after this is done go down to your foot and lightly stroke up from your toes and behind your ankle all the way to your knee, (there are lymph nodes behind your knee so lightly massage them too) and stroke all the way up to your groin, all the way up your side, armpit, collarbone, neck, etc. DEEP BREATHING is essential to clearing lymph fluid too.  Are you tired yet?? it is alot of work, but I do it in the shower every morning, and it takes me about 10 minutes and it is very beneficial. I can see results! Lastly, if you feel a lump if could be a "FULL LYMPH NODE" of fluid, hopefully, not cancer. I have had that happen in my abdomen above my lymph node dissection scar and I cupped my hand and pressed in with a scooping motion and massage and lightly stroked up towards my side and up to the collarbone, neck, etc. A few scooping/cupping motions/strokes can help empty a full node. All touches should be light, not heavy pressure. You said your compression stocking is thigh high. You may want to get the panty hose style (mine is custom made), that has one leg cut off at the thigh and the other is a full compression stocking. Whats good is it covers the groin and stomach, butt, hips, etc, and this really helps.

Its best you get the lump checked and hopefully it is nothing but collected lymph fluid. I hope you get to celebrate just like you planned. Did your lymphadema specialist give you handouts? I was given a whole packet of helpful information. I have had my leg wrapped for treatment when the lymphadema was really bad and it is amazing what lymphadema treatment can do when your leg is twice as big as normal!!

You can contact me privately if you would like more information or to talk!

Vermont_Donna,stage 3a

Just finished 4 rounds of Ipi and am stable per PET/CT scan last week!

Suzan AB - (2/21/2011 - 9:28am)

Thank you Donna for your instructions on getting the lymph fluid moving.  Of course, being who I am, I did it completly backwards...LOL.  Thanks again!

My best to you and yours,

Suzan AB

Stage IV, pesty lung mets...

Presently...One Day At A Time.