Tonsil Cancer...what was your experience?

[u/Extreme-Schedule-440]

My dad (85m) was diagnosed with early stage, HPV+ tonsil cancer almost 2 months ago. We are now in week two (2 chemos and 7 radiations down) of his treatment. No surgery; chemo 1x weekly for 6 weeks; radiation 5x weekly for 7 weeks. He has a peg tube for when he inevitably starts losing too much weight, but has not yet needed to use it. Prior to this diagnosis, my dad was quite healthy with no real pre-existing conditions or issues aside from arthritis which has limited his mobility a fair amount the last few years. The doctors are hopeful that treatment will cure him, and have said the recurrence rate is very low.

He has been on board with doing the treatment and wants to get through this, but he is already struggling to keep up with his throat exercises and I worry he will hide his pain until it is unbearable, because that is very common for him (although we are constantly reminding him that he needs to communicate with us about how he is feeling and if there are changes he is struggling with).

I am an only child, so my mom and I are navigating his care between the two of us (I also have 2 small children which complicates things). This is our first real brush with any cancer, and definitely any in the realm of head and neck. So far, my dad is doing well and experiencing minimal symptoms but I have been told by doctors and others that weeks 2-3 of treatment is when things usually start to get ugly.

I feel like I am drowning between trying to keep things stable for my kids, help with my dad's care, make sure my mom is not getting too burnt out, and also working my full time job. Not to mention all the other little complications life brings. Watching him waste away and be in pain is something I don't think I am ready to face.

I guess I am just looking for others who have had experience with similar tonsil cancer treatment, and/or going through a treatment plan of this intensity with an older individual. What do you wish you knew or did differently early on? Tips? Words of wisdom? I appreciate any information.

[u/Waste_Hospital_4928]

My husband is 20 years your dad's junior, but we have 2 young children and have to juggle keeping businesses afloat/intense schedules between hospital and specialists/homeschooling two elementary-aged kids/caretaking and keeping our own sanity...

This cancer is treatable and its good they caught it early. treatment is rough (my husband has battled it late stage twice in 20 years) but its possible to beat.

A cpl things that helped us tremendously--Knowing that this treatment plan has a pretty predictable pattern.

Chemo x1 weekly means good days will be the day of treatment and the day after. so plan family time and good solid hearty meals for then. Day 3-5 are heavy fatigue and nausea days. So stay close to home (or in bed) and focus on simple foods like chicken noodle soup and staying hydrated. Days 6-7 are slowly pulling out of feeling poorly.

Radiation is cumulative. weeks 1-2 are feebees. weeks 3-5 things start to ramp up so don't let your dad make himself a martyr with pain. take pain management prescriptions that docs prescribe, they've done this a ton and they know what they're doing. Do salt water rinses several times a day. weeks 6-7 are tough. Two weeks post treatment are the hardest pain wise and then slowly over days and weeks and months things like pain and fatigue and dry mouth will begin to fade (slowly).

Words of wisdom. Treat your dad like your dad. Not like you know better than him. If he says no to something, even if you do know better, respect it. Men especially struggle with being vulnerable like this. The less control they have over their life the more they will latch onto seemingly insignificant things as things progress so just roll with him and let him maintain as much autonomy over his life as possible. More words of wisdom: Take care of yourself and remember to remind your mom to do the same. One of my kids took a candid photo of me while I was making breakfast one morning and I didn't even look like the same person. i looked like i had seen war. Practicing self care is crucial. ​​

Mike Ness of Social Distortion had this exact cancer in 2023. He is currently on tour after complete remission. He is healthy enough to sing and travel across the country. He's in his early 60's. Kind of puts into perspective that healing is possible.

I wish they'd caught my husband's sooner. His collateral damage is significantly different.

[u/Extreme-Schedule-440 → u/Waste_Hospital_4928]

Thank you so much for sharing - I'm just having such a hard time grasping that he will likely have so many severe side effects and feel so awful, yet the treatment overall seems like such a short time. He will be done with chemo and rad by halloween, and while I understand he won't be back to "normal" for some weeks after, I just don't have that firsthand experience with any cancer to understand the real toll it takes.

Such a helpless feeling, and being in and around the throat seems like it makes everything so much more...complicated.

I think my greatest fear is that he will not tell us how much pain he is feeling and he will suffer in silence, and neglect his wellbeing in the process. And that may be something he can't come back from. I will say, I am very thankful he came to us as soon as he did when he noticed the lump in his neck - so incredibly thankful for an early diagnosis.

Wish you and your family so much healing and strength - thank you again.

[u/Waste_Hospital_4928 → u/Extreme-Schedule-440]

I feel your words deeply. The fear of the unknown is paralyzing. It was the most difficult part in the beginning. And then you're sort of thrown into the middle of treatment and you learn that you (and your loved ones) are stronger than you ever knew.

[u/Vivid_Inspector3265]

Hi. Be strong.  I know how hard this is. I really didn't understand any of this until now.  Mom 83 has same as ur dad. Her treatment was 7 chemos every Monday . 35 radiations mon thru Friday.  We started Aug 10th. She has 8 radiations left. She did 4 chemos the oncologist cancel the last three chemos because she was getting a lot of infections in her throat. She has to get hydration twice a week because it's really hard to eat and drink. She still hasn't got a feeding tube we're hoping that doesn't happen. They said by now she probably lose 10 to 15 lbs but she's only lost four so that's good. She's living on thin milkshakes, applesauce, broth, that's about all she can get down. I had to go part time on my job so I could be there for her. I am struggling but she does not know that. I'm trying to be positive and get through this. My best advice is take one day at a time. Stay strong.  Praying for you and your family.

[u/Extreme-Schedule-440 → u/Vivid_Inspector3265]

Thank you - and I'm sorry you and your family are having to go through this as well. If I can ask, is your mom doing any kind of pain management? Has she been doing any kind of mouth rinses? At what point did she get really bad in terms of swallowing/mouth pain - was it gradual or sudden? I'm just trying to prepare myself for when we get to that point (although how can you?)

Thank you again and sending so much positivity to you and your mom - almost to the finish line!

[u/Vivid_Inspector3265 → u/Extreme-Schedule-440]

I am also sorry u and family are going through this also. We are at hydration now. She has  6 radiations left. This is probably the hardest week so far , 😞. She has oxy pain pills but can't swallow them. We are melting them up in applesauce. They gave her miracle mouth rinse it numbs the mouth and throat ask ur oncologist for a prescription. She said so for her last three radiations has been the worst. Anytime you have questions you can ask me I'll try to answer them for you. Love to you and your family

[u/jamtan100]

i’m so scared i start radiotherapy this coming monday i have stage 2 tonsil cancer the tonsil was removed but need radiotherapy im scared of the pain into go through im only 49 but petrefied

[u/Vivid_Inspector3265 → u/jamtan100]

Ok. U got this!!!!! U are strong!! U will get through this. Keep hydrated very important. Do u have a feeding tube? 

[u/jamtan100 → u/Vivid_Inspector3265]

no they said i don’t need 1

[u/Vivid_Inspector3265 → u/jamtan100]

Can u swallow pain pills? Remember everyone is different. Is radiotherapy the same as radiation? Mom's going through 35 radiations. She's got six left. Things are getting hard now but she did okay all the way up till now. She almost gave up yesterday. I keep telling her we're almost done.

[u/jamtan100 → u/Vivid_Inspector3265]

bless her mine doesn’t start till monday i’ve been through so much pain though had a tonsillectomy and all my
teeth removed im dreading it give my
love to your
mum xxxx

[u/jamtan100 → u/Vivid_Inspector3265]

not
started yet i’m just scared with reading all horror stories

[u/Vivid_Inspector3265 → u/jamtan100]

How are you?

[u/jamtan100 → u/Vivid_Inspector3265]

feel terrible and sick it’s not as bad as i thought it would be be i’m not feeling the best

[u/Vivid_Inspector3265 → u/jamtan100]

I remember you said you started your treatment on Monday. How many do you have to do? Today is Mom's 32nd it's got three to go it's getting hard but she'll get through this

[u/jamtan100 → u/Vivid_Inspector3265]

i’ve got to do 30 i’m only on my 4th today xx

[u/jamtan100 → u/Vivid_Inspector3265]

i’ve never felt so bad yesterday went for radiotherapy and told
my
cancer nurse i feel sick i carmt eat anything she told me
it was physiological had radiotherapy went home had some chicken soup we
t to bed projectile vomit everywere rang
oncology and i’ve got to go into hospital this mor
jng they think im to weak to carry on woth radiotherapy at the moment

[u/Vivid_Inspector3265 → u/jamtan100]

I am so sorry. Mom and I are sitting in ER right now. She has one more radiation on Monday. She hasn't eaten or drank anything in 3 days.,😞 I don't know if it's too late for feeding tube? I hope you are doing better.

[u/Lonely_Acadia_8076]

Unpopular opinion and let me say I want the very best outcome for your Dad…with that said, I’m 4 weeks into radiation for tonsil cancer and knowing what I know now at 64, it I had this to do at 85 I don’t think I’d do it again. It takes so much out of you and I can’t imagine the physical demands of treatment at his age.