1. < Head & Neck Cancer

Severe Radiation burns from adverse reaction to mask from treatment

Posted by lja @lja, Dec 12, 2022

Hello everyone,
I am new to this group and in need of help/advise. I am the only caregiver advocate for my boyfriend, who was diagnosed with squamous cell tongue cancer in July. He underwent surgery at the end of August. He had a partial glossectomy with tongue reconstruction flap. They also removed 44 lymph nodes, one of which tested positive for cancer, but was in capsulized with no spread. The surgery was successful with margins greater than 5mm. We were told by the surgeon that he would not need radiation because of the surgery success and clear margins. After two weeks in the hospital, he was released and we went for a follow up appointment. We did not see the surgeon, but a nurse practitioner who informed with no discussion that the plan had changed and he would require radiation. 30 treatments 5 days a week for six weeks. We were given no explanation and left in shock with this complete change in treatment plan with no explanation.
I had grave concerns about this last minute radiation plan, but we were given very little time to research other options available. To add insult to injury, he was diagnosed while he was in the hospital with a 1.5 mm lesion on his liver that needed treatment. I am very grateful to the surgeon for discovering this in it’s very early stage which makes this easily treated and cured. He was scheduled for a Y90 procedure that was expected to cure this problem.
I, however, had serious objections with moving forward with radiation treatments without having time to look at other less destructive options. Now, two months later, he has weeping third-degree burns on most of his neck that has spread well past the supposed area being radiated. The radio oncologist is attributing this to an unusual reaction to the mask used to keep
him immobile while on the table being radiated. This rash like reaction initially covered his entire face and neck. Even though only the right side of his jaw was supposed to be radiated. Despite this adverse reaction, they continued treatment, and the effects have continued to get worse. I have spoken up repeatedly about my concerns, but continue to be ignored.
The effects from surgery and not hiving him time to heal, then radiation, combined with this reaction to the mask, which seems to be amplifying the radiation damage in places that aren’t even supposed to be radiated are beyond horrible. I do not know what to do. My boyfriend is in pain, despondent, depressed, and has been reliant on me to take care of everything.
Does anyone have any suggestions/advise or a referral. I am afraid they are doing irreparable damage and I feel helpless to stop it.

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jbj | @jbj | Dec 12, 2022

So Sorry, I had bad neck burns from radiation, but my Oncologist took me off Radiation for a week till it subsided with medication..
He should of given him a break, I'm hoping he's ok now, I also hD a mask, but I never heard it was a side effect from the mask, The Radiation had to do it, but like him, I only had it on my left side but they do the whole throat, because it could spread to my knowledge better to be safe..

REPLY
1 reply
lja | @lja | Dec 12, 2022
In reply to @jbj "So Sorry, I had bad neck burns from radiation, but my Oncologist took me off Radiation..." + (show)
@jbj

So Sorry, I had bad neck burns from radiation, but my Oncologist took me off Radiation for a week till it subsided with medication..
He should of given him a break, I'm hoping he's ok now, I also hD a mask, but I never heard it was a side effect from the mask, The Radiation had to do it, but like him, I only had it on my left side but they do the whole throat, because it could spread to my knowledge better to be safe..

Jump to this post

Thank you so much for reaching out to me. No he is not okay. The burns have gone down below his clavicle and he still has more treatments. No one in radiology seems to have much knowledge and no experience of a mask reaction only that it looks like it is amplifying the radiated area as well as areas that are not supposed to be radiated. His burns are bleeding and continue to worsen. This radio oncologist has not suggested he stop as yours did. I am concerned this extensive damage will create much worse short term and long term problems and even what is documented as normal.
I feel as if I am at my wits end with this entire radiation process. It is beyond frightening.

REPLY
5 replies
jbj | @jbj | Dec 12, 2022
In reply to @lja "Thank you so much for reaching out to me. No he is not okay. The burns..." + (show)
@lja

Thank you so much for reaching out to me. No he is not okay. The burns have gone down below his clavicle and he still has more treatments. No one in radiology seems to have much knowledge and no experience of a mask reaction only that it looks like it is amplifying the radiated area as well as areas that are not supposed to be radiated. His burns are bleeding and continue to worsen. This radio oncologist has not suggested he stop as yours did. I am concerned this extensive damage will create much worse short term and long term problems and even what is documented as normal.
I feel as if I am at my wits end with this entire radiation process. It is beyond frightening.

Jump to this post

I'm not saying I'm going to the best Hospital for Cancer, but its on the top 10 in the U.S. think its 2nd anyway, my Oncologist is the Director of Head & Neck, he needs a break from Radiation, sorry I would definitely seek another Oncologist in your area, asap, side efects are bad I'm post radiation since 3/22/22 still getting side effects, its rough..you need to get a 2nd opinion, I feel so bad as I remember the feeling, but when he took me off that week what a relief..please keep me posted
Hugs

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 12, 2022
In reply to @lja "Thank you so much for reaching out to me. No he is not okay. The burns..." + (show)
@lja

Thank you so much for reaching out to me. No he is not okay. The burns have gone down below his clavicle and he still has more treatments. No one in radiology seems to have much knowledge and no experience of a mask reaction only that it looks like it is amplifying the radiated area as well as areas that are not supposed to be radiated. His burns are bleeding and continue to worsen. This radio oncologist has not suggested he stop as yours did. I am concerned this extensive damage will create much worse short term and long term problems and even what is documented as normal.
I feel as if I am at my wits end with this entire radiation process. It is beyond frightening.

Jump to this post

@lja, I'm very sorry that you and your boyfriend are not getting the level of communication necessary to make treatment decisions that you're comfortable with and to deal with these terrible side effects. I might suggest:
A - Contact your hospitals office of patient experience. Most hospitals have a department that will help mediate when you are not satisfied with care and/or communication. It may be called the office of patient experience or patient relations or something similar. You might start with contacting them.
B - Seek a second opinion. Is it possible to seek a second opinion at a major cancer center?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 12, 2022
In reply to @lja "Thank you so much for reaching out to me. No he is not okay. The burns..." + (show)
@lja

Thank you so much for reaching out to me. No he is not okay. The burns have gone down below his clavicle and he still has more treatments. No one in radiology seems to have much knowledge and no experience of a mask reaction only that it looks like it is amplifying the radiated area as well as areas that are not supposed to be radiated. His burns are bleeding and continue to worsen. This radio oncologist has not suggested he stop as yours did. I am concerned this extensive damage will create much worse short term and long term problems and even what is documented as normal.
I feel as if I am at my wits end with this entire radiation process. It is beyond frightening.

Jump to this post

You may also find the tips shared in this discussion helpful for your boyfriend's radiation burns:
- My Dad has terrible burns from radiation. Any suggestions to help? https://connect.mayoclinic.org/discussion/radiation-burns/

REPLY
1 reply
blondiebabe1 | @blondiebabe1 | Dec 13, 2022

I'm so very sorry that you and your boyfriend are going through this. It seems as though some doctors do not have that human gene in them to remember that their patients are human that they are not doctors that they are not knowledgeable of everything going on. The doctors should walk you through step by step of what you are going to go through the side effects of it and stay in constant and clear communication. However that seems to be a pipe dream this seems to be the exact thing that we are running into as far as no communication I am in just disbelief of it all. I would suggest for you and your boyfriend to make an appointment ASAP with his doctor not the NP and show this doctor what is going on he cannot ignore the physical appearance of your boyfriend address the situation with the doctor and tell them that you need answers or we need to stop treatment until he can heal. It is just mind blowing I hate that you are going through this as the caregiver I cannot imagine the depression and the disparity your boyfriend is feeling. My niece who has stage 3 squamous cell carcinoma we have fought and went through the ringer to get her insurance then we got a doctor's appointment with an oncologist we thought she was going to be super awesome but her right hand lady has been every bit of a thorn in our side they tried to say that we could only get the pet scan done at a location that was more than two and a half hours away from where I live I repeated over and over this was not doable(upon researching it's part of there office's) and then all of a sudden radiation would have to be done (120mile round trip) 5 days a week that would mean 600 miles a week on my car and me paying for gas and when I address the doctor with that concern I was told I'm sorry there's nothing I can do about that but for this kind of cancer we have to fight at a certain way almost like they were purposely staring us to their facilities and because we have stayed local and went around what they wanted to get these orders done the Pet Scan and the MRI the lady that works for our doctor who does the scheduling and the orders has purposely and knowingly derail this at every corner along the way. My niece has been through it with her and every time my niece sees a light at the end of the tunnel with a scheduling a procedure or test this lady and her doctor's office Derailes it and it's a matter of time before my niece becomes overwhelmed and depressed and it's like these doctors or at least their workers and their office that's supposed to be there to help you could care less. What happened to being compassionate? Clearly we are going to have to seek another oncologist but for now we have to stay with this one until she gets her staging done for the second time where we will also voice our concerns of everything that has taken place but I'm 95% sure nothing will be done of it or even addressed.

REPLY
1 reply
lja | @lja | Dec 13, 2022
In reply to @colleenyoung "You may also find the tips shared in this discussion helpful for your boyfriend's radiation burns:..." + (show)
@colleenyoung

You may also find the tips shared in this discussion helpful for your boyfriend's radiation burns:
- My Dad has terrible burns from radiation. Any suggestions to help? https://connect.mayoclinic.org/discussion/radiation-burns/

Jump to this post

Thank you Colleen!
I welcome any help, or suggestions. This whole situation is so disheartening and I feel like a lone voice crying in the wilderness of protocols, statistics and standardized treatment. No consideration seems to be given for the person as a whole, and quality of life or lack there of being presented after the fact.

REPLY
lja | @lja | Dec 13, 2022
In reply to @blondiebabe1 "I'm so very sorry that you and your boyfriend are going through this. It seems as..." + (show)
@blondiebabe1

I'm so very sorry that you and your boyfriend are going through this. It seems as though some doctors do not have that human gene in them to remember that their patients are human that they are not doctors that they are not knowledgeable of everything going on. The doctors should walk you through step by step of what you are going to go through the side effects of it and stay in constant and clear communication. However that seems to be a pipe dream this seems to be the exact thing that we are running into as far as no communication I am in just disbelief of it all. I would suggest for you and your boyfriend to make an appointment ASAP with his doctor not the NP and show this doctor what is going on he cannot ignore the physical appearance of your boyfriend address the situation with the doctor and tell them that you need answers or we need to stop treatment until he can heal. It is just mind blowing I hate that you are going through this as the caregiver I cannot imagine the depression and the disparity your boyfriend is feeling. My niece who has stage 3 squamous cell carcinoma we have fought and went through the ringer to get her insurance then we got a doctor's appointment with an oncologist we thought she was going to be super awesome but her right hand lady has been every bit of a thorn in our side they tried to say that we could only get the pet scan done at a location that was more than two and a half hours away from where I live I repeated over and over this was not doable(upon researching it's part of there office's) and then all of a sudden radiation would have to be done (120mile round trip) 5 days a week that would mean 600 miles a week on my car and me paying for gas and when I address the doctor with that concern I was told I'm sorry there's nothing I can do about that but for this kind of cancer we have to fight at a certain way almost like they were purposely staring us to their facilities and because we have stayed local and went around what they wanted to get these orders done the Pet Scan and the MRI the lady that works for our doctor who does the scheduling and the orders has purposely and knowingly derail this at every corner along the way. My niece has been through it with her and every time my niece sees a light at the end of the tunnel with a scheduling a procedure or test this lady and her doctor's office Derailes it and it's a matter of time before my niece becomes overwhelmed and depressed and it's like these doctors or at least their workers and their office that's supposed to be there to help you could care less. What happened to being compassionate? Clearly we are going to have to seek another oncologist but for now we have to stay with this one until she gets her staging done for the second time where we will also voice our concerns of everything that has taken place but I'm 95% sure nothing will be done of it or even addressed.

Jump to this post

I am so very sorry this is happening! Unfortunately, the more I research and the more people I talk with, I’m finding this to be a common theme.
I have been doing everything in my power to research/document all that is and isn’t being done, and communicating in writing with the doctors and medical professionals. I would strongly suggest that you document everything.
This might also help your situation, several people have told me they have had better experiences if they are in a place where everything is done under the same roof. I know that Cleveland clinic has a place for family to stay while a person is going through cancer treatment. Mayo also treats their patients under one roof. Maybe they could assist you with the traveling issue.
What is particularly concerning for me is not being given the time to understand or options for treatment. We were basically issued a last minute Edict by a NP not a doctor “you are going to have radiation”. No options, or no discussion, no explanation. The standard cancer protocol (surgery, radiation, chemo) seems to be a one size fits all mentality and cancer is anything but that.
I found out too late that he absolutely had other options besides radiation, but once radiation starts the damage is done. You can’t rewind the life long inescapable side effects once your DNA is damaged. That’s why they call radiation, “The gift that keeps on giving.”
If it all possible,
I would highly recommend contacting Mayo Clinic and/or Cleveland Clinic. I feel they will give you options alternatives and hopefully better communication.

REPLY
blondeboss | @blondeboss | Dec 14, 2022
In reply to @lja "Thank you so much for reaching out to me. No he is not okay. The burns..." + (show)
@lja

Thank you so much for reaching out to me. No he is not okay. The burns have gone down below his clavicle and he still has more treatments. No one in radiology seems to have much knowledge and no experience of a mask reaction only that it looks like it is amplifying the radiated area as well as areas that are not supposed to be radiated. His burns are bleeding and continue to worsen. This radio oncologist has not suggested he stop as yours did. I am concerned this extensive damage will create much worse short term and long term problems and even what is documented as normal.
I feel as if I am at my wits end with this entire radiation process. It is beyond frightening.

Jump to this post

In order to get the attention your boyfriend really needs, he needs to let the team know he does not want to continue treatment. My husband was not doing well with his radiation and no one suggested a break, or that he needed checked for infection etc. once he told them he was not continuing treatment, they came up with multiple solutions. The gave him a week break from radiation and he was sent to acute care and admitted because he had an infection and was severely dehydrated

Give it a try

REPLY
1 reply
lja | @lja | Dec 14, 2022
In reply to @blondeboss "In order to get the attention your boyfriend really needs, he needs to let the team..." + (show)
@blondeboss

In order to get the attention your boyfriend really needs, he needs to let the team know he does not want to continue treatment. My husband was not doing well with his radiation and no one suggested a break, or that he needed checked for infection etc. once he told them he was not continuing treatment, they came up with multiple solutions. The gave him a week break from radiation and he was sent to acute care and admitted because he had an infection and was severely dehydrated

Give it a try

Jump to this post

Thank you for this suggestion! I’ll try anything if it will help him not have to suffer any more.
How long ago did your husband go through radiation? Has he gotten back to a normal healthy life? My concern is that this much damage will make not only recovery more difficult, he’ll have greater risk of worse scaring, fibrosis, (speaking, swallowing) trismis, lymphedema and secondary cancers. No one (doctors, other medical professionals) want to talk about this and if there is something that can be done. They give us more generalities.

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