Lymphedema (?) after radiation..

Larry449
Larry449 Member Posts: 51 Member
in Head and Neck Cancer #1

After suffering thru all the typical side effects of radiation, I had my post treatment PET Scan on December 1 (two weeks ago, today). Yesterday I had the follow up with my radiation oncologist. The good news, the cancer is GONE! However, during the visit with my doctor, she did the normal exam: vitals, listened to my heart and lungs, etc.. all seemingly ok. Then, examining my neck right below my chin, she said that I still had still had a little “fluid left in there”. Because my mouth still isn’t close to 100%, It just didn’t register in my mind. I didn’t think to ask…

Now this is where I need to point out that I’ve had a beard for 48 years. When I lost most of my beard to the radiation, I looked in the mirror and my first thought was ‘damn!, my face really got old under there!’. I’ve got small jowls and my neck got fat!

After I got home I started thinking about what she said, so back to the mirror and saw it differently. It really was … puffy, like fluid, not just old man neck. So here I am, after a Google search and a quick search on the forum, everything I’m seeing points to Lymphedema. My afterthought question for the doctor should have been “Is it going to go away?”.

I’m going to try to call her today and ask, but in the meantime has anyone here had this? Is it actually lymphedema? Does it/did it go away? I try not to be vain, (ok, maybe a little) but if I’m going to have a fat neck I sure hope my beard grows back!

Tnx,

Larry.

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #2

    I had it and many on here. The lymph fluid doesn't drain as it should after radiation. I think you will find mostly all the folks on here had it just eventually go away. When it is bad during and right after treatment you can get lymphedema therapy and do the lymphedema exercises at home. it seems you are beyond that stage and if you are patient this will go away as they say your lymph system finds new pathways to drain, but I cannot guarantee your neck will be like it was before being assaulted with radiation.

    Oh and Larry---Yeeeeeeeeeeeeeeeeeeee-Haaaaaaaaaaaaaaaaaah congrats on being free of cancer and a clear scan and a great follow up. This is the best news ever. This is what you been workin for and now it's here-the rest of your life. I now pronounce you NED (No Evidence of Disease) or as some doctors say "Your recent scan is Unremarkable"

    Wishing You The Best-Take Care-God Bless-Russ

  • Larry449
    Larry449 Member Posts: 51 Member
    #3

    Thanx for your reply, Gus.

    I wasn’t made aware of much of this beforehand. I mean, Docs recommended a feeding tube because “most patients need them because it becomes hard to swallow”, but I really wasn’t prepared for the mouth pain and all that.. My last radiation was on August 30th. Eight weeks later I was still swabbing my tongue with lidocaine. Remarkably, three days later the pain just stopped! (8 weeks and 3 days post rad). I still deal with mucus and dry mouth, still haven’t figured out what I can eat enough of so I can loose the peg tube, but I’m gaining slowly. Of course I was ecstatic when she told me the cancer was gone but when I started think about “still have some fluid in there” I thought, oh, great! What now? My oncologist didn’t even use the word “lymphedema”. I found that when I did my searches… also, knew nothing about lymphedema therapy other than what you said and some references in those searches. So maybe I’m late enough in the game that I won’t need it… would be interested to know those exercises, tho’, so back to Google, I guess. I did leave a message at my doctor’s office this AM but so far she hasn’t called back.. So thanx again. Time to relax and stop worrying!

    Larry

  • Larry449
    Larry449 Member Posts: 51 Member
    #4
    https://csn.cancer.org/discussion/comment/1691329#Comment_1691329

    Err… Russ!

  • Larry449
    Larry449 Member Posts: 51 Member
    #5

    I just found this on the Inspire forum, posted by RussellSR

    “Yes it it very common here is a massage I do for neck and jaw lymphedema”

    https://www.youtube.com/watch?v=VQdLZ26r-rU&list=PL3TCJZwjrf...

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #6

    OK Larry it looks like you found the video.

    Yes stop worrying, the main thing is no cancer.

    All the rest of the odds and ends are small change to deal with.

    You can do it NP and if something is going on that you need help with or aren't sure of contact your cancer team they will help.

    I had lymphedema and did not realize it but on a checkup visit the nurse noticed it and explained it and set me up with a lymph therapist and I had 2 or 3 sessions with her and she gave me papers showing me the lymph drainage exercises I should do and I did not go back just did the exercises at home.


    Take Care-God Bless-Russ

  • Larry449
    Larry449 Member Posts: 51 Member
    #7

    Russ.. .NP?

  • annapurna
    annapurna Member Posts: 6 Member
    #8

    My husband had his surgery 2 years ago, and his lymphedema got much worse over the past 3 months. His head is swollen, and so are his eyes, he can hardly open them. He did have some PT sessions about a year ago and was told to do some massages at home. I did them for him, but only sporadically. I know we should have done much more, but here we are. Does someone have the same experience with a swollen face and nearly shut eyes? What is the best way to help him quickly? We will see the PT again in a week, but in the meantime any suggestions? Does food play any role in this?

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #9

    I have not heard of lymphedema severe to this extent especially 2 years out I think for most people it is nonexistent at that time. From what I am seeing most lymphedema cases are resolved in about 6 weeks.

    How long does it take for lymphedema swelling to go down?

    Lymphedema can develop soon after surgery or months or years later. Some mild swelling after surgery is normal. This swelling may last for up to 6 weeks. It's often temporary and will gradually go away.Mar 29, 2021


    Are you working with a lymphedema specialist and is his problem verified as lymphedema? If not I would get with your cancer team and have it evaluated. If it is not verified it may be something else going on. If his face is that swollen that his eyes are nearly shut I think I would seek immediate medical attention. I wouldn't wait a week. Is it painful for him? Well, here is a link to some info from the American Head and Neck Society

    https://www.ahns.info/survivorship_intro/topical_review-lymphedema/

    I have found info that says it can be very serious on oncolink--

    In severe cases, patients should be followed closely as the swelling could block the airway, making it hard to breathe. Lymphedema in the head and neck cancer patient is manageable when diagnosed and treated early. Report any symptoms to your provider. If you feel like the swelling is making it hard to breathe, call 911 right away.

    Here is the page for oncolink and more info on lymphedema https://www.oncolink.org/cancers/head-and-neck/head-and-neck-cancer-survivorship/lymphedema-after-head-and-neck-cancer

    And finally here is a link to a video of a therapist showing what exercises/massage you can do at home

    https://www.youtube.com/watch?v=VQdLZ26r-rU

    I am Wishing You The Best and hope he can soon get some relief.

    Again it sounds very serious as described make sure you are on the right treatment path and if ther is any question in your mind see the doctor right away.

    Take Care-God Bless-Russ

  • annapurna
    annapurna Member Posts: 6 Member
    #10

    Russ, thanks for your prompt reply. His GP actually did send him to the ER about 10 days ago, since he was afraid it could be a blockage somewhere (new tumor, blood clot etc). They did many tests and scans, and Thank God it was none of those. His kidneys are an issue but in that case the swelling should be also in the ankles, legs etc. The kidney specialist's finding are still out (after 10 days!!) and we are waiting for these. We are seeing a different Head and Neck specialist for a 2nd opinion on Thursday. Let's hope for the best!

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #11

    Anna that answers a bunch of questions there that your GP was concerned enough that he sent him to the ER, it answers the fact that neither you nor your doctor is taking this lightly and you are staying on top of it to get it resolved. Thank God that there are no blood clots, blockages, new tumors, etc. as that is of the biggest concern. Hopefully, the kidney specialist will get his results to you, and not sure what is taking so long, ten days should be enough. Hopefully, the ENT second opinion will find a solution to this problem, or all the physicians working together can usually find the problem. So not only will we hope for the best we will also pray for the best outcome.

    Wishing you the best-Take care-God Bless-Russ

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #12
    https://csn.cancer.org/discussion/324501/lymphedema-after-radiation

    Larry

    I had it pretty bad and on one of my visits to my doctor who was 74 miles away from me he searched and found a local physical therapist who was trained in lymphedema of the neck and set me up with visits to her. Due to a full neck disection I also had weak muscles in my left shoulder so she also gave me therapy for that. She would massage my neck to get rid of the fluid and she did so quite aggressively. Being 6'2" and her around 5'4" it hurt but I was determined no matter how hard she pressed I wasn't going to let on that this little lady was hurting me. I believe I went for about 4 to 5 months twice a week and it was well worth it. The lymphedema was gone and I could pick up a gallon of milk agin with my left arm fully extended. Hope this helps.

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