My son just diagnosed with stage 4 SCC HPV related cancer

DefianceNotDefeat

First, I am driving myself crazy reading the medical websites on this type of cancer.

My son is 33, in great physical shape, positive and happy person. He starts radiation Jan 16th of 2017.

The cancer has spread to his lymph nodes and his tonsils. They are removing a saliva gland. He lives in another province so it is really hard on both of us.

I don't know what I can do to help him. He had a PET Friday to see if it has spread anywhere below the collar bone.

He is insisting on working all through him chemo and radiation - he is so stubborn.

All I desperatly want to hear is survival stories from people who have beat this. He send me a message worried that they have not scheduled in some surgery for him, and he believes that means the prognosis is not good. I don't know but I am hoping that the radiation and chemo are first and if need be then they will do surgery.

I havent eaten in 5 days. I cannot concentrate and I cannot get out of this deep sorrow. My boy does not know I am like this, as I would never want to make him worry about me. I am desperate for people's sucess stories.

BTW I am in Canada.

 

Any advise on what I can do to help him?

 

 

 

jakesaround

Get the tonsils and lymph nodes removed first...

DND, i am sorry to hear about your sons situation and about your worries. I am a parent as well and i do think that these things are typically harder on the care givers/family members than the patients themselves. Imo i do suggest getting the surgery first especially since it is in his tonsils. Getting a tonsillectomy is such a common and routine procedure it will not have any long term effect on him and it will only produce positive results, as in removing a cancerous tumor from his body immediatly. Even having a neck dissection to remove cancer infected lymph nodes is a painless proceedure that will leave him with a unnoticable scar in the folds of his neck. I had both of these procedures done at the same time and i am and was so grateful to have the cancer instantly removed from my body. I always felt like i was cancer free after my surgery but i decided to have the radiation and chemo just to be thorough in my treatment. There are many people who survive this cancer/treatment and lead a thriving life afterwords. the survival rates are in the 80+ percentile for HPV related H&N cancer when diagnosed and treated early like this.

One question though is why are they removing a salivary gland? If they are going to do that i would have at least the tonsils taken out as well but i would ask for the lymph nodes removed at the same time as well.

Stay strong and do your best to support your son through this. I was able to work through 4 weeks of Radiation and Chemo but after that i had to take some time off to finish treatment and recover. Radiation and chemo affect us all differently but to be sure it will take its toll.

Jake...

 

swopoe

Sorry to hear this. My

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.

RottiesMom

Success story

I will be 61 years old on Thursday, on no medication, and in great physical shape.  In May I was diagnosed with SCC Stage IVA tonsil cancer metastized to 2 lymph nodes.  A petscan showed cancer no where else.  I underwent 35 radiation treatments (7 weeks), 3 cycles of cisplatin 3 weeks apart concurrently, ending August 16.  I had no surgery.  A petscan in November showed no evidence of cancer at all (not even any residual "light ups).

Joanne

rcaulder

Success

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. 

phrannie51

Hello and welcome to

our little club...the one no one wants to join!  You have picked a great place to find survivors, that's for sure. 

Different Drs. seem to have different approaches....tho at the end of treatment we all seem to have had the same things happen.  Rads, chemo, and surgery....Has your son taken anyone with him on his Dr. visits?  In the beginning these Dr. visits are a lot like getting a drink from a fire hose....SO much information that things get forgotten, misunderstood, or plain not heard at all.  Having another person there doubles a person's chances of getting the most information.  Radiation shrinks tumors....they may be wanting to shrink the tumor first, then do surgery.  The thing is....it's OK to ask them, question them (make a list of questions before going to the appointment)....it's ok to slow the Dr. down so a person can write things in a notebook....

Tell him that he's mind tripping himself with the prognosis stuff (I can say this as I am in the top ten mind trippers of all time....!!!).  His Drs. have a plan...he needs to know what exactly it is, and why they think this is a good one.  His prognosis is good.  1) he's very young and strong....2) it's HPV derived, and 3) even us old folks seem to survive pretty darn good. 

The chances of him working through the last weeks of radiation are not that good....I think we all think this when we first get diagnosed.  But unless he can work from home, the chances are he'll need some time off. 

HE'S GOING TO BE OK!!!  Having someone to help him out would be a great asset.  Even if friends could do a round robin, and take different days to see what he needs.

p

obiwan

Hang in there

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 ...

DarcyS

Survivor story

My husband just had his 4+ year check up and is still NED with minimal side effects.  He had stage 4 scc of the piriform sinus. T1N2bM0.  He did not have surgery only 6 weeks chemo followed by 50 imrt radiation sessions with concurrent chemo.  There is hope!  This site is filled with many who can guide and help both you and your son.  

DefianceNotDefeat

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.

DefianceNotDefeat

jakesaround said:

Get the tonsils and lymph nodes removed first...

DND, i am sorry to hear about your sons situation and about your worries. I am a parent as well and i do think that these things are typically harder on the care givers/family members than the patients themselves. Imo i do suggest getting the surgery first especially since it is in his tonsils. Getting a tonsillectomy is such a common and routine procedure it will not have any long term effect on him and it will only produce positive results, as in removing a cancerous tumor from his body immediatly. Even having a neck dissection to remove cancer infected lymph nodes is a painless proceedure that will leave him with a unnoticable scar in the folds of his neck. I had both of these procedures done at the same time and i am and was so grateful to have the cancer instantly removed from my body. I always felt like i was cancer free after my surgery but i decided to have the radiation and chemo just to be thorough in my treatment. There are many people who survive this cancer/treatment and lead a thriving life afterwords. the survival rates are in the 80+ percentile for HPV related H&N cancer when diagnosed and treated early like this.

One question though is why are they removing a salivary gland? If they are going to do that i would have at least the tonsils taken out as well but i would ask for the lymph nodes removed at the same time as well.

Stay strong and do your best to support your son through this. I was able to work through 4 weeks of Radiation and Chemo but after that i had to take some time off to finish treatment and recover. Radiation and chemo affect us all differently but to be sure it will take its toll.

Jake...

 

They did not offer surgery.

They did not offer surgery. They were initially going to remove his tonsils but they are not doing that because there are too many tumors there. They are taking out the saliva gland and his lymph nodes. I talk to him every day on video and I can see the worry in his face, as much as he tries to hide it. I keep letting him know the survival stories and being reassuring. He's trying to be strong but he is also terrified of food now - anything that can harm his body. I keep reassuring him he will survive. All I have to do to be happy again is find out his PET scan is clean. Thanks so much for the advice.

 

 

swopoe

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

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. 

tommyodavey

Yes, Yes, eat!

Please take swopoe's advice about the eating suggestion.  Once you can't swallow you'll regret not putting on extra pounds when you could have.  Most of us lost a great deal of weight but it all comes back in time.

I am so sorry for both you and your son.  He is in for a rough ride but at 33 he is better shape than a lot of us were who got it in our 50's and on up.  I got mine at 57 and now at 62 I'm good to go.  He'll have some radiation leftover effects but will be ever so grateful to be alive.  Which he will be.  He will beat this and come back almost 100% later.  Yes, it will hurt for a short time but he will heal and recover, just like all of us here.  This is a Survivor forum and you came to the right place.  He'll be fine.  Please take care of yourself as the caregivers and other family members seem to suffer greatly.  I think it was harder on my wife than what I experienced.  To watch and not be able to help will stress you out so please, please, take good care yourself or your son will worry about you.  He doesn't need that on top of everything he's going through.  If he knows the ones he loves are okay then he can focus on himself and get better.

You will all get through this.  We are here to help and pray.

Tommy

JC F

Been there, done that...

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...

Drivingdaisy

Same Here

Please , both You & Your Son need to enter, endure, emerge through this horrific adventure of Cancer with a Positive outlook that Cancer does not control Your life.......YOU Do!!  One Day, One Hour, One Minute takes on a new meaning.  I am just finishing up My 1st yr.  Previously, I had always been an individual who felt The Glass is half empty.  I become an Individual the NOW feels " The Glass is FULL". 

Was diagnosed Jan 2016 while seeing an ENT for sinus & allergery issues.  Diagnosed...  Stage 3, SCC left tonsil area with small spot possible base of tongue, HPV 16+, HPV 16+ being a key word.  No surgeries, 7 wks Rads/Chemo combo.  The treatment is brutal, NO way around it.  Considered worse treatment in condensed time.  But as You have read from other posts, We made it.  We are a Special Club of Warriors.  I had a feeding tube, lost 40 lbs I could not afford to really lose, worse pain I have ever endured.  Birthing 2 children all natural, 2 back fusion surgeries were a piece of cake next to this.  This is we're I really learned the true meaning of " One Day at a Time" !  Have Your Son really listen to the above suggestions given above regarding eating, especially drinking & swallowing, creams for burns, supplements, and work.  Any questions ask this board.  This board is fantastic for help & support.  

To finish up, I was pronounced NED ( no evidence of disease) 2 1/2 months Post-Treatment.  Have had numerous Throat & Full Body scans throughout this yr.  PETs, CTs with & without dye, so many blood test I've lost count, every part of My body checked, Cancer Marker blood test level....cut in 1/2, each result better & better.  I am healthier than before Cancer.  I have suffered with Depression most of My life.  Been diagnosed with PDST due to many tragic, stressful events throughout My life, stomach issues, back issues since childhood.  During this fight, I  finally said NO MORE!  Cancer & Negativity WILL NOT control My Life,  Only I control My Life !  I may have Cancer lurking in My body, hence the HPV+ Virus, but I Will Live My Life to the Fullest.  I AM a Warrior !  

I hope this helps both You & Your Son.  Please let 2017 be a Healthy New Year for All especially Your Son. 

Hugs, Lisa

jthornsbury

Good for You Reaching Out

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

CivilMatt

welcome

DND,

Welcome to the H&N forum, a place where we break the ice.

I cannot insist that he keep working, because treatments sometimes give you a different perspective on work.

He should get use to drinking lots of water and swallowing often.  As crazy as it sounds, some members forget how to swallow.

Get used to getting  3k calories ANY way possible.

Staying hydrated and nourished  is a huge success during  treatments.

Most likely he will feel mouth, throat and tongue discomfort, his taste buds may hibernate and his saliva may go on strike.

BUT, it does come to an end and most H&N members wake up to a new normal sometime down the road and it is GOOD.

Matt

Roar

So much to say

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

MGC

Surgery

I think Surgery is not necessarily the best option. I am almost 7 years out from stage 4 SCC tonsil and BOT HPV+ . Multiple lymph nodes from neck all the way down to shoulder. No surgery, just chemo and rads. Best thing you can do is spend a few days here reading. So many get surgery that is un needed but Doctors are clueless in many places. My treatment was at a Cancer center where they specialize in head and neck and see and treat my types 40 or 50 every day. It makes a difference. Yeah It’s a long 400 mile drive for a checkup, but the alternative was get treated where they deal with my types of cancer a few at a time.

Good Luck

 

Mark

DefianceNotDefeat

Thanks everyone. I have

Thanks everyone. I have passed along all your advice of which I thank you for so much. I know he listens because he asks "what did they say about food?". Right now he is enjoying his time off from work (too cold in Manitoba for steel work) and his attitude is great. Still have not heard word back from his doctor on his PET scan. Until then emotionally he is doing better and I hope the news when it comes will be good news. Wishing you all a happy new year. Thanks so much for all your advice. Much love to you all.

AnotherSurvivor

I was Stage III n1 m0 HPV 

I was Stage III n1 m0 HPV  tonsil.  Treated by 7 chemo (carbol taxil) concurrent with 33 rad.  I was pretty strong when I started, but now with one rad treatment left am only semi-mobil.  At about four weeks of seven heavy stuff started to hit.  It won't be the cancer treatments he finds hard, it's the unforscene side effects that really take it out of you.  I was going strong until week 4, now I wish I had added weight.  I'm down 25 pounds.  I have difficulty swallowing even water, though homecooked chicken broth with the fat still in it is going down well.

I strongly suggest he get  a suction pump, I have a gomco schocho 330a, that I live on.  consistently mucos seems to be the worst side effect I read about.  mine was from medicalresources for $177. 

gfofsurvivor

another survivor

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