My son just diagnosed with stage 4 SCC HPV related cancer

Sorry to hear this. My husband was 40 when he was diagnosed last year with tongue cancer. He was in excellent shape too. He had surgery, chemo, and rads, and with the exception of a few days off from work, he did work through all of his treatment. It is not common, but it is possible, depending on the job. My husband has a desk job. Tell your son not to push himself when it comes to work, but for some people, working through treatment helps them feel better and more normal, according to our doctors. It really did for my husband.

My husband's mom lives 1500 miles away from us. It was very hard on her not being near her son while he was going through treatment. But we called her often, kept her in the loop, and just tried our best. Sometimes I would talk to her alone so we could share our feelings of sadness and fear without her son knowing. Does your son have a local support system? Wife, girlfriend, friends? That will be important.

There are many success stories here. Best of luck to you and your son.

HPV cancer responds well to treatment. I was HPV stage 4  Tonsill cancer May 2015 with bilateral lymphnode involvement. 35 radiation treatments and Erbitux. No surgery. Very hard course of treatment, but all is well. I was stubborn also and worked through treatment.  He'll be ok. Trust in the Lord. 

Hey - just wanted to leave a quick note of encouragment.  Please be strong.  You will hear from various members of this group - and you'll see that not only will he beat this and have a full and enriching life - but this will also leave him a much stronger person.  Please don't worry - the treatment phase may be tough, but he will emerge on the other side a much stronger man.  Please take care of yourself - this can be tough on loved ones and family - you will need to be strong and positive in order to be helpful to him - so please make sure you're not missing any meals, and generally taking care of yourself ...

DefianceNotDefeat said:

This has been the best thing

This has been the best thing for me. Thank you to all you strong people who have shared their stories. He is far away from home and he has a close friend who has head and neck cancer for 15 plus years but he doesn't want to talk about it with him because his friend's prognosis is not good. My son does steel work and it is very physical but he is also a foreman so I hope he will take it easy. Right now he is terrified of food - doesn't know what to eat or drink. He will be seeing a nutriotionist next week. I suggested he joing this forum but he says he doesn't want to talk about it. I know he is going through stages and he will be a little more comfortable soon discussing things.

Right now he should eat anything and everything he wants to get his calories up and put on some pounds. Most patients lose some weight because eating becomes difficult. I remember our nutritionist telling my husband to load up on cheesecake and milkshakes or even both. So for now, while he can eat anything, tell him to do so. His eating habits will be one thing surely to be affected by radiation. 

In agreement with everyone else here. I had Stage IV SCC BOT HPV 16+ with metastasis to three right side lymph nodes. The primary tumor was so large that surgery was not a viable option. My neck lymph nodes looked like a golf ball sticking out. Could hardly swallow food at that point. 35 rads, three marathon cisplatin chemos. Rough, but over two years later, still NED, so it's definitely doable. Eat as much as possible beforehand and don't worry about what it is, weight loss is inevitable over treatment. Also advise to not consider working after going 3 or 4 weeks into treatment as heavy fatigue is also inevitable and the body needs to recover, especially if doing a physical job. His chances for complete recovery are very good, as evidenced by the survivors here.

BTW, I'm also in Canada...

DND,

First and foremost you are right where you need to be by getting on this site. It was just what I needed when I was diagnosised Jan 2013.  SCC HPV+ on right tonsil. After 33 rounds of IMRT at MD Anderson in Houston.  Doctors and team told me to eat all my favorite foods in the weeks up to my start of treatment...Calories. Calories. Calories. It was the first time a doctor told me to eat anything, everything in sight as needed to get my weight up as will lose a lot during treatment. I was weighted every week and was given a minimal weight that I could fall too before they would suggest putting a stomach tube (feeding tube) in my body.  During my treatment Ensure became my friend as my nutritionist from MDA (who was with me every step of the way) set a goal of 3200 cals A DAY!!! So one ensure approximatly EVERY TWO hours a day (yes EIGHT a day)...and that was on top of eggs, yogart, cottage cheese (and any other of my fav foods that I could stand).  It was six months before I could eat an egg after I finished treatment and I have not looked at an ensure bottle since...but I met the goal and did not need a stomach tube.  His medical team will know exactly what to do and how it will effect him...they will walk with him every step of the way.  My lead MD told me that there were four things to remember -- It is treatable. It is curable. Eat. Eat. And then eat somemore. And take the pain meds. He told me that it was very unlikely that the cancer would kill me but that the treatment will feel like they were trying to kill me. (It was rough but not as rough as I thought it would be) He told me if I would remember those things and do them...He and the team would get me through this. That was close to four years ago and in June of 2017 I will have my offical four year checkup (CT Scan Head and Neck. Chest X-ray and camera down the nose - oh so much fun but necessary). The first two years after treatment is the most critical so I am pretty much on the edge of the woods not complely out of them...with each year after year two with a clear/clean scan increasing the probability that the treatment worked. Those are things to think about AFTER you and your son get through the next six months...it will be a day by day kind of jouney BUT it is DOABLE.  I have met so many people who were diagnoised with SCC HPV+ H&N and they are living life to the fullest. He has a lot going for him and the time between diagnosis and treatment is the worse part of the journey. But once you get into treatment it gives you something to focus upon and start the battle. One good thing during this time was having my wife going with me as she wrote down all the stuff the doctors said...so that I could always go back to get my questions answered even at 2 am in the morning when I woke up with "did the doctor say that???". 

All that said...ask questions. Use this site. Listen to your medical team. And then fight! It is doable. 

jon

if he can make it to work until the end of treatment -  God bless him- I made it about half way through. Radiation every day - 5 days a week for about 7 or 8 weeks - 3 citsplatin chemo treatments. I am now a little over  four years out of treatment. My advise is put as much weight on as possible the next few weeks. He will need the extra pounds in the end of treatment. I would also recommend enjoying everything that tastes good to him as it may take a while to get his taste back. Enjoy a nice steak and a good bottle of wine. After four years, my taste is still off. It took me about a year to get to a point of a new normal. I work out. I work . I do martial arts and teach the same. I am enjoying life even though I was a stage four HPV SSC. AND WAS TOLD TO GET MY AFFAIRS IN ORDER. Positive attitude is critical, as is a functional support system and a great hospital and team of doctors. This room is filled with success stories. There are many more people who can give much more advise than I can. You will want to find out about magic mouth wash as he progresses into treatment. This will allow him to swallow his food without much pain for a few minutes. I don't want to overwhelm you with two much all at once. Just remember recovery will be a slow process measured in months not days or weeks. STAY STRONG AS HE WILL NEED YOU. Welcome to the club. Good luck in the fight and don't give up . If he needs a kick in the ****, give it to him

My bf in his 50's was diaganosed last spring of throat/tongue cancer the HPV virus. Sadly I can't remember stage 3 or 4. Regardless he just got a his 3 mos check up after chemo and radiation and he is currently cancer free.

For him the doctors said surgery was a last resort as it would mean cutting out part of his tongue, thus effecting his speach.  He works in the school system so speaking is his career. He had 6 weeks of radiation everyday and 3 chemo session of "CSplat"?   His biggest issue was eating...ie swallowing. If a feeding tube via his stomache is offered tell him to do it.  If he doesn't have to use it great but if he does it is much easier and will help him to keep the calories on so that he does not lose alot of weight and can continue to stay healthy and fight.  Buy a blender and get all the smoothie recepies he can get...and all the good ones with extra calories...he will need it.

If he can still work, let him, it will allow him to focus on something. But remind him he is sick and somedays after chemo he may need to take a day or two to recover. He's a man and we know how stubborn they can be.

 In the end my bf was fortunate. He is regaining some of his taste buds. Not all but some is better than what he was told he would have. Saliva glands he lost but that too gets a little easier and guarantees he will be getting his 8 - 8oz glasses of water a day.

Keep a postive attitude, he will look to you to have it when he needs it. He sounds like a fighter and Im sure you will be back posting of his success. Best of luck to both of you.

PS in Canada as well....East Coast