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Has anyone experienced lymphedema?

deanna14
Posts: 734
Joined: Oct 2008

Just wondering if any of you have/are suffering from lymphedema? For the past few days I have been having some pretty significant swelling in one of my legs. I was under the impression if you were going to get lymphedema that it would be soon after surgery and radiation. I had surgery 9/08 and finished radaition 12/08.

I would appreciate any insight you all can provide. I will probably make an appointment if this doesn't resolve by Monday.

cleo
Posts: 122
Joined: Sep 2009

Yes. I was warned that this could happen after removal of lymph glands and two months after radiotherapy noticed the swelling in my left leg. The sooner you make your appt and get to a physiotherapist who is trained in lymphatic drainage the better as you will be treated and taught how to do self massage to keep the swelling under control. I wear a pressure stocking during the day but am fine without it if I have a 'skirt occasion'. I've got used to the stocking and do the self massage morning and night. If I don't I definitely see and feel the difference in the leg.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Last summer my ankles AND my feet would swell up when I did a lot of walking, but now just my ankles are puffy most of the time (worse at days end; best when I first get up). For my trip to Greece I invested in 5 pair of compression knee-highs in the lowest 'squeeze' and now I wear a pair every day and they really help. (and feel WONDERFUL! I encourage anyone with any ankle swelling to get them. I LOVE mine! Although I can't imagine what I'm going to do this summer! Knee socks aren't going to be too cute with shorts and sandals: HA!) I've mentioned the ankle swelling a few times during routine oncologist appointments, and they check them, but I have never been referred to a physiotherapist, so perhaps it is not bad enough to need anything further than the Jobst socks, which I got online without a prescription (about $20@ pair, if I remember right). The doctors just say "Prop your feet up every chance you get." When I am on my feet a lot my legs feel like lead from the knees down when I lay down to go to sleep, even though the swelling is confined to my ankles. I also think that slight swelling I get in my pelvic mound is lymph-related, since that goes up and down in tune with my ankle swelling, a theory I've mentioned to my chemo-onc and P.A. and they both say "probably". My CT/PET scans clearly show that it is a small amount of fluid collecting there, and is noted as 'probably radiation-related'. I plan to ask about that again when I see my gyn-onc Monday.

Deanna: if the swelling is in just ONE leg, or HURTS, or feels warm to the touch, you need to call right away to make sure it isn't a blood clot. If it goes all the way up your leg, please call regardless. Chubby ankles are one thing, but anything more is something I'd want looked at. (((hugs)))

MoeKay
Posts: 63
Joined: Feb 2004

Several years after finishing treatment for endometrial cancer, I was asked to speak about my cancer experience at a local hospital program for newly-diagnosed cancer patients. That same evening, there was another informative presentation on lymphedema. I learned that lymphedema does not necessarily only occur shortly after completing treatment, but can appear as much as twenty years later.

It seems as though there is a lot of awareness about lymphedema after breast cancer treatment, but, as is typical, not very much in the gynecologic cancer arena.

As a result of that seminar, even though I am more than ten years post-treatment, I still watch for any signs of lymphedema. It's my understanding that the sooner any swelling is dealt with, the better.

Good luck,

MoeKay

deanna14
Posts: 734
Joined: Oct 2008

I have used the Jobst stocking that was prescribed to my husband when he had a blood clot. It did seem to help. This has not really been an issue until the last few weeks. To the point that I can't wear a lot of my shous and had to buy bigger boots. It is mainly my right leg which appears to be swelling in the upper thigh and knee too. I have had a sore feeling in the right groin for about 2 months now. The doctor told me to stretch... which seems not to be helping anything, rather causing it to ache.
I say the rad/onc last week and he checked the groin discomfort thoroughly and said he didn't see/feel any lymph node enlargement.
I will bring it up again in March with the gyn/onc.... I am sure he won't do anything!

cleo
Posts: 122
Joined: Sep 2009

Deanna please insist that you get a referral to a lymphedema specialist as, in my opinion, if you need a larger shoe size this is not going to go away and you will need specialist massage information. It is also important that the stocking is the correct pressure for your particular need.

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Absolutely get to a physical therapist who is certified in lymphedema. Don't wait because it likely will come back again even if it gets better. Treating early and aggressively is key to controlling lymphedema. Wearing something as simple as SPANX can help with the swelling. Therapist can teach you how to do self message to help lymph nodes drain. Also the big exercise balls if you get one and sit on it and rock side to side and back and forth can help lymph nodes....so can bike riding.

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Yep...have swelling in the left leg; slight amount but I feel it, especially in the shin area; interestingly it's in the same leg in which I have numbness in the upper thigh and lower abdomen; this was side effect of surgery; dr told me he had to move a nerve; feeling may or may not come back; I remind him of it each time I go, but it's not severe enough to warrant more than a nod and a feel; I wear a light compression stocking most of the time; I recently injured my left knee...three small accidents and the swelling in the knee is persistent, but manageable; no deep vein thrombosis; question you ask yourself is "does it progress as the day wears on and disappears over night"; or is it there all the time; if it disappears, no worries; if it's there all the time with pain and tenderness, it could be a DVT (Deep Vein Thrombosis) and needs to be checked out ASAP

luck and good wishes to all

Marie

deanna14
Posts: 734
Joined: Oct 2008

I had my 3 month follow up appt. last Thursday. I have been having 1-2 plus pitting edema in the right leg and 1 plus pitting edema in the left leg for a couple of weeks. I got up to go to the doctor... my legs were almost normal! So, they just told me if they swell enough that they are uncomfortable to let them know and they will refer me to the lymphedema clinic. I have my next CT scan on the 22nd, so I may ask for that referral then. I have some old shoes I would love to be wearing if I could get my big fat feet in them! LOL.

Hope you are all feeling well!
Love and Hugs,
Deanna

Ro10's picture
Ro10
Posts: 1397
Joined: Jan 2009

I noticed my shoe being tighter on the left foot. I have some swelling up to the knee. It is strange because I have some neuropathy in the right foot. I notice the neuropathy after walking about 30 minutes and then it goes away when I quit walking. I had some TED hose from being in the hospital, so I wore those and it helped with the swelling. I will ask the onocologist about a lymphedema clinic, however we will be going back to Illinois soon. I also have some arthritis in my left foot which makes wearing shoes a little uncomfortable. I agree with others that little aches and pains occur as days go by. In peace and caring.

Ro10's picture
Ro10
Posts: 1397
Joined: Jan 2009

Duplicate entry, problems with internet. Copied it several times. Sorry.

Ro10's picture
Ro10
Posts: 1397
Joined: Jan 2009

Another duplicate entry.

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