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Facial lymphedema

pwaters765
Posts: 9
Joined: Jan 2010

I am very fatigued since radiation finished over a month ago. I was also wondering if anyone out there has had any swelling of their face post radiation, it started almost a month after rads started. I have been to my onc, primary, allergist, no one has a clue what it is. I finally got my onc to refer me to the lymphedema center and was told that I have facial lymphedema...I was just wondering if anyone out there has ever heard anything like this?

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

I have never heard of this. I am so sorry that you have it now. Sending you hugs and good luck!

♠♣ Susie ♠♣

dyaneb123's picture
dyaneb123
Posts: 951
Joined: May 2009

No, I have it in my arm and chest, but not my face. So sorry to hear that.

Different Ballgame's picture
Different Ballgame
Posts: 870
Joined: Jan 2010

You were radiated on the breast/breasts and now you have facial lymphedema. How many radiation sessions did you have?

I finished radiation - 31 times - on right breast. Last day was Monday, January 18. When I woke up on Thursday, January 28 directly underneath my left ear by my jawline I had a swelling the size of a small hen's egg. The next day swelling appeared to be the size of a medium sized egg. Went to my primary care doctor later that day. Since I had no fever, felt great except for the swelling, had the mumps when I was a young child, saw the dentist the previous Saturday for a cleaning and check up, and right side of jawline was perfect, the doctor wrote up a prescription for an antibiotic and told me to take it the minute I felt different - not myself - and that I was to call him again on Monday to tell him how I was doing. Saturday afternoon I happened to bend my head backwards and felt more swelling in my neck (fleshy part - not bone) directly to the right and to left of the center of chin - chin is reference point for the swelling - chin was not swollen, just beneath it in the center of my neck. So...I filled the prescription and started the antibiotic. Swelling is disappearing and much better today (Monday). I have a 10 day supply of the antibiotic

I did zap an e-mail to my radiology oncologist first on Friday before I contacted my primary care doctor and she responded that radiation was not the cause of the swelling because I was not radiated in that area.

Did anyone explained to you how you got facial lymphedema? Did you ask him how common this was? What part of your face was swollen?

What have they prescribed for you and is it working?

I am very curious about your progress. Would you mind keeping me informed via private e-mail.

Kudos to you for continuing to pursue it until you finally got an explanation. The bottom line is that we still have to be responsible for our own well being. May you heal quickly.

Janelle

pwaters765
Posts: 9
Joined: Jan 2010

Yes, you are correct, I had radiation for Breast Cancer, however, they radiated my neck, between my jaw line and my collarbone, so close to my neck that I couldn't even move my jaw. I ended up with a bad burn on my neck. Not only do I have the swelling in my face, but my jaw is still sore and I have trouble swallowing my food and taste is still not normal, I just truly believe that my lymph glands have been compromised in the neck area, so therefore cannot effectively work like they are supposed to. All my doctors so far have treated this like an allergy and have had me on prednisone on and off four times, to no avail. I had a CT scan of the soft tissue of my neck and face, but it was normal, except for some scarring on my upper left lung......Holy crap, now I will worry about what that is..Anyway, back to the face, it has been swollen since Dec 7 and it's between my eyes, my nose and cheeks and upper lip, I have pools of fluid under my eyes that is very apparent.
I'm happy to hear that your antibiotics are working, that's wonderful!! I wish I could get a fix like that. I'm about at my wits end here.
I really appreciate your respose to me and as soon as I can figure out how to respond to your private email, I will surely do that:) Still figuring out the site.
Thank you again,
Peggy

Different Ballgame's picture
Different Ballgame
Posts: 870
Joined: Jan 2010

Peggy, I don't understand why they radiated your neck?'

I made you my friend which means that I can send you a private message. Right now I am at work, existing on 3 hours sleep because I was on the computer all night. Consequently my brain is not functioning as sharply as I would like it to function. In addition, my eyes are somewhat tired and strained. That's what lack of sleep will do to you.

I'll get back to you about learning how to navigate on this site.

Janelle

pwaters765
Posts: 9
Joined: Jan 2010

Hi Janelle,
Thanks for writing, I hope you have been able to catch up on your sleep. I know I couldn't do that right now..
In answer to your question about why they radiated my neck, I was told that it was for precautionary measures to the lymph nodes in the neck, because they can't get to those surgically without invasive surgery to check them. I don't know, but, I do believe this is the culprit to all my troubles.
I have jaw soreness, hoarse throat, trouble swallowing, you name it. That stuff gets better everyday, however, the facial swelling does not. I go to the lymphedema center next week to start therapy and I'm hoping to goodness this works.
Looking forward to hearing from you.
Thanks,
Peggy

Different Ballgame's picture
Different Ballgame
Posts: 870
Joined: Jan 2010

Peggy,

What I don't understand is why did they radiated the lymph nodes in your neck and not radiate the lymph nodes in your armpit? If you have breast cancer, they radiate the lymph nodes in your armpit.

Do you have your breasts? Where do you live?

I pray that the therapy works.

Lots of Hugs & Lots of Love,
Janelle

pwaters765
Posts: 9
Joined: Jan 2010

Hi Janelle,
I guess I should have said that I was radiated in five different areas, under the arm, chest wall, neck and scar area, so I did get it all and then some:( I don't know, I start therapy next week, I am praying that it helps, nothing else has.

Thanks for your hugs, I need them,
Peggy

Tux's picture
Tux
Posts: 541
Joined: Aug 2009

Facial swelling has been a big problem for me, with no cause found, even after tests. This was before bc dx. I discontinued lysinopril (sp) for blood pressure, because of the swelling & my allergist put me on ranitidine twice a day (it's a histamine blocker) & I have had no recurrence.

The facial swelling (uticaria)was very embarassing & unsightly. Have had no problems for about 2 years. Could the swelling be unrelated to the bc?

Hope you get some relief for this!

seof
Posts: 826
Joined: Jun 2007

I have not had or heard of experiences like this. My only thought is to ask Dr. if Benadryl or something like it might help reduce the swelling. Hope you find help for it soon.

seof

meena1's picture
meena1
Posts: 1005
Joined: Oct 2008

Like Peggy, i also had radiation done in the area between my neck and collarbone, so i have similar problem that i keep complaining about. I had radiation there because i had some activity in the clavicle area. I also burned very badly in that area. The area is still tender

New Flower
Posts: 4140
Joined: Aug 2009

I will ask my lymphedema therapist tomorrow about facial lymphedema.

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