Late radiation effects, specially fibrosis

Mattie65
Mattie65 Member Posts: 82 Member
edited December 2020 in Head and Neck Cancer #1

Hello again. I would really like to talk about late radiation effects. I tried to inform myself online as good as I could, searched the forum, asked my doctor (who mainly brushed it off by saying I shouldn't read too much) and I still can't decide what to think.

I'm getting 60 Gy radiation to the tumour zone between my left tonsil and my left ear and 51 Gy to my jaw and neck, approximately along the carotid. The technique is OptiArc. 

Right now, at 28 of 30 sessions, my throat is swollen, but only on the left side. I also have lymphedema under my left jaw.

How likely am I to get fibrosis in years to come? Is there something I can do to prevent? Or am I out of danger due to modern radiation technique, which is what the doctor suggests?

Comments

  • ERomanO
    ERomanO Member Posts: 323 Member
    edited December 2020 #2
    Forget all the numbers and

    Forget all the numbers and just assume that you will need to be proactive about keeping fibrois at bay.  Stretch your neck from side to side, up and down, every day.

  • Mattie65
    Mattie65 Member Posts: 82 Member
    #3
    ERomanO said:

    Forget all the numbers and

    Forget all the numbers and just assume that you will need to be proactive about keeping fibrois at bay.  Stretch your neck from side to side, up and down, every day.

    So many new routines.

    Good. Thanks for the info. I will try to develop a routine for such things. I wonder if I can really change to do so. I usually get tired of physical routines pretty quickly.

  • Logan51
    Logan51 Member Posts: 468 Member
    #4
    Yep

    What ER said. I've been dealing w/neck spasms for the last 10 years w/2 meds. I got 60 on both sides of upper-throat, 68 to bottom. I returned to work 1-month after my last Rad session and did not know about stretches or any type of physical therapy. Not sure if it would have made a difference, but the spasms started less than a year after tx and got worse fast. Neurologist is my Dr., and thinks damage is permanent. I did get massages from a Physical Therapist after I became FT-dependent, and sure noticed a positive difference to the spasm frequency...so, maybe massages to both sides would be good?

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #5
    Gentle Massage

    Mattie,

    I am glad to read you are near the end of your Radiation treatments. Lymphedema is an issue many of us have to deal with for some time. I posted a technique taught to me by my Cancer Physical Therapist many years ago which helped. She also gave me some easy stretching exercises to do daily. Both were helpful and I still do them when needed. I had a Radical Neck Dissection so many Lymphnodes were removed which in turn caused a backup of the Lymph system in my neck and face daily. This happened even though I was sleeping in an incline position with my head and neck above my heart level. It has improved over time. 

    Here is the link to my original post which was added to the Superthread some time ago. I hope it can help you. If you don't find it helping, ask about seeing a Cancer Physical Therapist. Also, my Radiation Oncologist suggested that I get my Carotid Arteries checked around the 10 year mark to make sure I had good blood flow and avoid a stroke.

    https://csn.cancer.org/node/196680

    My Best to You and Everyone Here

     

  • Mattie65
    Mattie65 Member Posts: 82 Member
    #6
    Logan51 said:

    Yep

    What ER said. I've been dealing w/neck spasms for the last 10 years w/2 meds. I got 60 on both sides of upper-throat, 68 to bottom. I returned to work 1-month after my last Rad session and did not know about stretches or any type of physical therapy. Not sure if it would have made a difference, but the spasms started less than a year after tx and got worse fast. Neurologist is my Dr., and thinks damage is permanent. I did get massages from a Physical Therapist after I became FT-dependent, and sure noticed a positive difference to the spasm frequency...so, maybe massages to both sides would be good?

    Good to know

    Thanks, I'll talk about this with my physical therapist. I certainly got a lover dose (60/51), one-sided, but I don't know if that matters a lot or not and if there's a critical point. Radiation doctor said I shouldn't worry but does he ever see his patients years after?

  • Mattie65
    Mattie65 Member Posts: 82 Member
    edited December 2020 #7
    MarineE5 said:

    Gentle Massage

    Mattie,

    I am glad to read you are near the end of your Radiation treatments. Lymphedema is an issue many of us have to deal with for some time. I posted a technique taught to me by my Cancer Physical Therapist many years ago which helped. She also gave me some easy stretching exercises to do daily. Both were helpful and I still do them when needed. I had a Radical Neck Dissection so many Lymphnodes were removed which in turn caused a backup of the Lymph system in my neck and face daily. This happened even though I was sleeping in an incline position with my head and neck above my heart level. It has improved over time. 

    Here is the link to my original post which was added to the Superthread some time ago. I hope it can help you. If you don't find it helping, ask about seeing a Cancer Physical Therapist. Also, my Radiation Oncologist suggested that I get my Carotid Arteries checked around the 10 year mark to make sure I had good blood flow and avoid a stroke.

    https://csn.cancer.org/node/196680

    My Best to You and Everyone Here

     

    Very helpful

    Actually, the post you linked was one of the first things I read on this board and also one of the things that sold me to it. I bookmarked it instantly.

    I, too, had radical neck dissection with many lymph nodes removed. Celebrating the end of therapy this afternoon and then, time to make plan for the routines to avoid late complications at best.

  • PipLily
    PipLily Member Posts: 127 Member
    edited December 2020 #8
    Mattie....

    my husband does have some mild lymphedema post treatment. He is going to a cancer lymphedema specialist currently, to learn “massage  technique “ that he will have to do forever just to minimize it’s effects. He has been told this lymphedema can contribute to fibrosis occurring. My husband still also does his stretching and swallowing exercises three times daily to keep the side effects minimal. The swallow study he had post treatment was just as good as preop, and he wants to keep it that way!

  • PipLily
    PipLily Member Posts: 127 Member
    edited December 2020 #9
    MarineE5 said:

    Gentle Massage

    Mattie,

    I am glad to read you are near the end of your Radiation treatments. Lymphedema is an issue many of us have to deal with for some time. I posted a technique taught to me by my Cancer Physical Therapist many years ago which helped. She also gave me some easy stretching exercises to do daily. Both were helpful and I still do them when needed. I had a Radical Neck Dissection so many Lymphnodes were removed which in turn caused a backup of the Lymph system in my neck and face daily. This happened even though I was sleeping in an incline position with my head and neck above my heart level. It has improved over time. 

    Here is the link to my original post which was added to the Superthread some time ago. I hope it can help you. If you don't find it helping, ask about seeing a Cancer Physical Therapist. Also, my Radiation Oncologist suggested that I get my Carotid Arteries checked around the 10 year mark to make sure I had good blood flow and avoid a stroke.

    https://csn.cancer.org/node/196680

    My Best to You and Everyone Here

     

    MarineE5....

    thanks for the link! I had not previously seen your post. Very helpful!

  • Mattie65
    Mattie65 Member Posts: 82 Member
    #10
    PipLily said:

    Mattie....

    my husband does have some mild lymphedema post treatment. He is going to a cancer lymphedema specialist currently, to learn “massage  technique “ that he will have to do forever just to minimize it’s effects. He has been told this lymphedema can contribute to fibrosis occurring. My husband still also does his stretching and swallowing exercises three times daily to keep the side effects minimal. The swallow study he had post treatment was just as good as preop, and he wants to keep it that way!

    Don't know …

    … if my lymphedema is mild or not. It's definitely under my left chin, and it's visible. I go to a physical therapist who gives me a sort of massage. I expect it to get better when the swelling goes away. I will have to set up some exercise routines for my neck and also my jaw. I hate exercise routines, but I will have to find a way to integrate them into my daily life.

  • big G
    big G Member Posts: 177 Member
    edited December 2020 #11
    Mattie65 said:

    Don't know …

    … if my lymphedema is mild or not. It's definitely under my left chin, and it's visible. I go to a physical therapist who gives me a sort of massage. I expect it to get better when the swelling goes away. I will have to set up some exercise routines for my neck and also my jaw. I hate exercise routines, but I will have to find a way to integrate them into my daily life.

    Lymphedema

    Hello all, the neck messages and jaw stretches will certainly help. My oncologist says the thing that will make the most difference is time.

  • Mattie65
    Mattie65 Member Posts: 82 Member
    edited December 2020 #12
    big G said:

    Lymphedema

    Hello all, the neck messages and jaw stretches will certainly help. My oncologist says the thing that will make the most difference is time.

    Yes, that's …

    also what mine says. He also said that, at the moment, I shouldn't bother too much. Just try to relax until I have the force to care for myself.

  • Cornflakes69
    Cornflakes69 Member Posts: 3
    edited January 2021 #13
    Hi Mattie

    I had lymphedema about 3 months after my radiation therapy. I was sent to physical therapy where they would massage the swelling out of my neck but it would come back the following day. They teach you how to massage your neck and also to wrap around your chin and head. It took about 3 or 4 months for the swelling to go away. No more swelling for me but I now get neck spasms a few times a day.

  • Mattie65
    Mattie65 Member Posts: 82 Member
    edited January 2021 #14
    Cornflakes69 said:

    Hi Mattie

    I had lymphedema about 3 months after my radiation therapy. I was sent to physical therapy where they would massage the swelling out of my neck but it would come back the following day. They teach you how to massage your neck and also to wrap around your chin and head. It took about 3 or 4 months for the swelling to go away. No more swelling for me but I now get neck spasms a few times a day.

    Hey Cornflake69

    I get physical therapy and it does improve the swelling. I also try to massage it myself, with the help of instructions from another user on this board. It's sort of hit or miss. Sometime, the swelling seems to regress, sometime not.

  • Kenny-
    Kenny- Member Posts: 99 Member
    edited January 2021 #15
    Hi

    I have neck spasms that come and go. about 2 years after radiation, I went to see a chiropractor. as my muscles get "Stretched" - I hadnt realized there was quite a bit of scar tissues. I could hear it "tear" as I did a deep massage around the neck. It sounds like a paper tear. It took several weeks of "tearing" and I am glad as it as it increased mobility. Ever since I have been trying to do daily neck exercises (like tilting neck backwards, rotation, etc). It seems to help. I still do have neck spasms but it a new normal for me to just keep those stretches going. Lately been doing a lot of pullups to strengthen the back of my neck. I had no physiotherapy of the neck, and would recommend if there is concern. 

    hang in there and while those spams can be annoying, it is a new normal and every day is a blessing. 

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