Head & neck radiation side effects continue, especially swelling

Posted by jessskoldal @jessskoldal, Jan 23, 2022

I was diagnosed with Esthesioneuroblastoma in June of 2021. I underwent two surgeries to remove the tumor and repair my skull base. After healing from those surgeries I underwent 30 rounds of radiation therapy to my head and neck. During radiation therapy I experienced brain swelling but with the use of steroids we were able to continue and ultimately complete the full 30 rounds. Since radiation has ended in November I have experienced a myriad of lasting side effects. I was initially told that it would take 6 to 8 weeks to heal from radiation, but I am finding that even this far out (11 weeks) I am still experiencing some pretty significant and frustrating side effects. The most concerning side effect I am experiencing right now is swelling. My face and neck are very swollen but I have noticed that I am experiencing swelling in my arms, legs, hands, shoulders, etc. Pretty much anywhere that can swell has developed swelling although my face and neck are the most noticeable. My oncologist doesn't think this is lymphedema and other issues such as thyroid dysfunction and Cushing's syndrome have been ruled out as well. My oncologist says this is an "inflammatory response" because I was sensitive to the radiation treatments and this will likely take an additional 1 to 3 months to resolve. To me, it just seems like no one really knows what is going on or what to do about it and they're just making guesses. I'm beyond frustrated at this point and am desperately seeking advice from anyone that may have experienced this or is currently experiencing this. Being swollen all the time is extremely uncomfortable and is one of the main reasons that I have been unable to return to work. Though I would not wish this on anyone, I hope someone out there has gone through this or has some advice to offer. I'll take any little bits of information or advice available.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Hello @jessskoldal and welcome to Mayo Clinic Connect. I can empathize with your feelings of frustration following the long journey you have already been on with your head and neck radiation and tumor removal.

I wonder if you've ever heard of and considered lymphatic drainage massage? Here is a link to learn more if interested.

– How to perform a lymphatic drainage massage:
https://www.medicalnewstoday.com/articles/324518#benefits
Has your physician ever mentioned this as an option?

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Hello!
Thank you for replying and welcoming me!
My physician has mentioned this and also referred me to a local massage therapist that gave me instructions on how to perform different massage techniques on myself. I've been following those instructions for several weeks now without seeing any improvement. The therapist did mention the flexitouch system and has started the process of seeing if my insurance will cover this device, but I haven't heard much about that yet. I just wonder of course if I'm doing these massage techniques right since I'm not seeing any improvement. It also makes me wonder if this is even a lymphatic issue at all. I just have so many questions and so few answers. When I take steroids I see a drastic improvement in the swelling which also makes me wonder about the root cause of this issue…would I see improvement with steroids if this was lymphatic related? Or does that point to it being something else? My physician has been great but of course I can't contact him with every little question I have.

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@jessskoldal

Hello!
Thank you for replying and welcoming me!
My physician has mentioned this and also referred me to a local massage therapist that gave me instructions on how to perform different massage techniques on myself. I've been following those instructions for several weeks now without seeing any improvement. The therapist did mention the flexitouch system and has started the process of seeing if my insurance will cover this device, but I haven't heard much about that yet. I just wonder of course if I'm doing these massage techniques right since I'm not seeing any improvement. It also makes me wonder if this is even a lymphatic issue at all. I just have so many questions and so few answers. When I take steroids I see a drastic improvement in the swelling which also makes me wonder about the root cause of this issue…would I see improvement with steroids if this was lymphatic related? Or does that point to it being something else? My physician has been great but of course I can't contact him with every little question I have.

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Jess, I moved your question to the Head & Neck Cancer group. I did this to better connect you with others who may be able to share tips from their experiences with radiation side effects, members like @alpaca @srm @hrhwilliam @fwpoole @kco @mindyt @birdsforever @denisebriggs

You may wish to explore the discussions in the Head & Neck Cancer group here https://connect.mayoclinic.org/group/head-neck-cancer/

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@jessskoldal

Hello!
Thank you for replying and welcoming me!
My physician has mentioned this and also referred me to a local massage therapist that gave me instructions on how to perform different massage techniques on myself. I've been following those instructions for several weeks now without seeing any improvement. The therapist did mention the flexitouch system and has started the process of seeing if my insurance will cover this device, but I haven't heard much about that yet. I just wonder of course if I'm doing these massage techniques right since I'm not seeing any improvement. It also makes me wonder if this is even a lymphatic issue at all. I just have so many questions and so few answers. When I take steroids I see a drastic improvement in the swelling which also makes me wonder about the root cause of this issue…would I see improvement with steroids if this was lymphatic related? Or does that point to it being something else? My physician has been great but of course I can't contact him with every little question I have.

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Hello @jessskodal. I'm afraid I have no helpful tips. I have lymphoedema under my chin after a recent head and neck surgery with 6 pages of notes on how to do the massage. Because of Covid, most of my appointments with the physio have been via Zoom and I'm not sure if I'm doing the massage right either. But mine is not a big problem and I agree yours is not like the typical lymphoedema. Flexitouch sounds worth a try though.
I can only offer solidarity and perhaps the thought that you are still close to treatment and it can take about 6 – 7 months to recover from radiotherapy to the head and neck, I was told.

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@colleenyoung

Jess, I moved your question to the Head & Neck Cancer group. I did this to better connect you with others who may be able to share tips from their experiences with radiation side effects, members like @alpaca @srm @hrhwilliam @fwpoole @kco @mindyt @birdsforever @denisebriggs

You may wish to explore the discussions in the Head & Neck Cancer group here https://connect.mayoclinic.org/group/head-neck-cancer/

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Thank you!

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@alpaca

Hello @jessskodal. I'm afraid I have no helpful tips. I have lymphoedema under my chin after a recent head and neck surgery with 6 pages of notes on how to do the massage. Because of Covid, most of my appointments with the physio have been via Zoom and I'm not sure if I'm doing the massage right either. But mine is not a big problem and I agree yours is not like the typical lymphoedema. Flexitouch sounds worth a try though.
I can only offer solidarity and perhaps the thought that you are still close to treatment and it can take about 6 – 7 months to recover from radiotherapy to the head and neck, I was told.

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Solidarity alone is helpful. I also find it helpful to know that you were told it can take 6 to 7 months to recover from radiation. My oncologist likes to tell me it takes 6 to 8 weeks, but we're far beyond that now and I am still having issues. One of my surgeons told me that it definitely takes at the very least 6 months. Having those two varying opinions confused me, but I was more inclined to believe what my surgeon said. I'm especially more inclined to believe what he said now that you tell me you were given a similar timeline. It's so frustrating to be told vastly different things about the same topic by different medical professionals. I don't know if you've had that issue as well. Hopefully not.

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I was told a month for every week of treatment (in terms of going back to work) so for many that would be 6 months. However, the radiation is meant to go on working for a couple of weeks after the end of treatment so the 6 week measure could mean an end to the immediate effects? Solidarity again!

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@alpaca

I was told a month for every week of treatment (in terms of going back to work) so for many that would be 6 months. However, the radiation is meant to go on working for a couple of weeks after the end of treatment so the 6 week measure could mean an end to the immediate effects? Solidarity again!

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That makes a lot of sense. It's never been explained to me that way, but a month for each week is absolutely more realistic sounding than 6 to 8 weeks altogether. The immediate effects did start to clear up after a few weeks initially so maybe that is what he meant but that's not how he presented it. My original release for work said I'd be out for 6 to 8 weeks after treatment ended. But here we are almost 12 weeks out and I'm actually starting to have a recurrence of radiation side effects and I'm nowhere near physically ready to return to work. I have blisters on my tongue again, I'm constantly fatigued, my taste is all wacky again…I just don't understand why these things that had gone away are coming back as if I'm actively being treated and have brought all this swelling with them. The only radiation side effect that hasn't started happening again is hair loss. But it also hasn't started to grow back in some areas.

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Hi I am in my second week post 7 WK treatments. No one was very good at explaining that this was going to be so very difficult. My Radiation doc says 2 wks out I should be on the mend. Chemo doc just told me today it could be 3 months. I don't know what to believe. It's the thick phlegm that's plugging up my trach tube and fatigue. I had surgery first and think Ive lost hearing in my left ear from that. I'm a 67 otherwise healthy woman who has gone from 186lbs to 131lbs in a little over a year. I have severe trismus so bad I can't open my mouth. No appetite feeding through a tube, don't know anyone or where to find out what I can really expect now. Can you help me please

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@hnc67

Hi I am in my second week post 7 WK treatments. No one was very good at explaining that this was going to be so very difficult. My Radiation doc says 2 wks out I should be on the mend. Chemo doc just told me today it could be 3 months. I don't know what to believe. It's the thick phlegm that's plugging up my trach tube and fatigue. I had surgery first and think Ive lost hearing in my left ear from that. I'm a 67 otherwise healthy woman who has gone from 186lbs to 131lbs in a little over a year. I have severe trismus so bad I can't open my mouth. No appetite feeding through a tube, don't know anyone or where to find out what I can really expect now. Can you help me please

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Hi hnc67,
When the doctors give you a time frame on recovery, you should ask them how long it took them. The fact is in my experience as well as others whom I have talked with, your recovery will be a battle, but a battle you can (and must) win.
Two weeks after radiation has stopped is usually the lowest point you will be. The effects of radiation continue to compound after it ends. Just like a roast from the oven, it continues to cook for a while after it is removed. Usually after the two week point your recovery will be gradual, two steps forward and one step back. After two months you will wonder "When is this ever going to end?" Two years out and you will say " Wow, Ok, I'm not perfect but this is a lot better." A few years later you will be comfortable with your new normal.
Oh smack! What does that mean? For each of us it is different. For me, I can't eat rice without sauce or milk, white meat chicken without gravy, bread without butter, or swallow any pill larger than 1000mg among other eating issues. But that's all OK because I have adjusted my eating and was back to my normal weight within two years.
What I am saying is the recovery is slow and difficult. When you get your taste back it will probably make you cry as most of us have cried. When you get a day when your mind wasn't on your cancer you will cry. When you see a stranger in the grocery market with all the signs of cancer treatment you might walk up and hug her/him without words and cry again. And twenty years out when life has given you roses you never expected, when you can talk with someone from our world, when you can once again enjoy life and have an appreciation for the life you fought for, you will probably cry again.
We cannot help you with your suffering and recovery. We cannot hold your head or hand though we wish we could. But we can reassure you that there is life after cancer and it is a good life. And before I go, when you get your taste back and feel like eating again, buy or make your favorite pie (Cherry) and just get a fork and enjoy. No one gets to tell you "No."

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