Just diagnosed Squamous Cell Cancer on right tonsil and right lymph node(s)

You will, on occasion, see posts on here from people that seem to have no other intention then dragging others into their misery. Be ready to ignore them because they are not here to help or get help, just to complain and vent their anger.  A little venting is okay, but if that is ther ONLY thing we read from that person it becomes obvious that they neither seek nor offer any help.

By the way, once you get over the initial hump, and even if you have some lingering side effects, you will be a busy man, and a happy man because that's what raising kids is all about.  I have been helping my 25 year old daughter shop for her first house.  When she buys one I too will be a very busy man, and staying busy helps me feel pretty darn close to normal.

We wish you you the best, and you will also have many prayers acompanying those wishes!

I am a 48 year with three children and amazing wife too. I also was diagnosed with SCC of right tonsil and lymphnode. Waiting for that first PET is horrible, but you are likely fine. This cancer moves slowly and doesn't typically jump all over the place. I was convinced it was everywhere in my body. I did 33 rounds of radiation and 7 rounds of Cisplatin. This will kick your butt, but it is doable. Everyone seems to respond differently. I did not get a feeding tube, and do not regret the choice even though it hurt like hell. I neither oppose it or endorse it. I would listen to your doctors and make the decision you think is best for you. Regardless, keep swallowing no matter how hard it gets. It is a muscle. The key is finishing the treatments, and whatever it takes to accomplish that goal. The key to finishing treatment is no matter what, drink tons of water to keep your kidneys flushed if you are doing chemo, and eat plenty of calories however you have to get them.Rest often. If you go to the Superthread on this forum, there is a ton of invaluable advice and info.  I am currently 6 months post treatment and doing so much better. Mine was HPV 16+, and I'm guessing yours likely is too. My advice is to avoid google (it will make you even more anxious) and stick exclusively to this forum. It is definitely what helped me keep my sanity, and still does almost every day. Stay positive and be strong. Trust your family, friends and caretakers. You'll need them. Eat as much as you can while you can. Not the time for losing weight or trying some new age diet. By the end of week two of rads, you will likely start feeling the pain when swallowing. Medicate as needed in order to get those calories.  Godspeed

Jambro2018 said:

Deja Vu

I am a 48 year with three children and amazing wife too. I also was diagnosed with SCC of right tonsil and lymphnode. Waiting for that first PET is horrible, but you are likely fine. This cancer moves slowly and doesn't typically jump all over the place. I was convinced it was everywhere in my body. I did 33 rounds of radiation and 7 rounds of Cisplatin. This will kick your butt, but it is doable. Everyone seems to respond differently. I did not get a feeding tube, and do not regret the choice even though it hurt like hell. I neither oppose it or endorse it. I would listen to your doctors and make the decision you think is best for you. Regardless, keep swallowing no matter how hard it gets. It is a muscle. The key is finishing the treatments, and whatever it takes to accomplish that goal. The key to finishing treatment is no matter what, drink tons of water to keep your kidneys flushed if you are doing chemo, and eat plenty of calories however you have to get them.Rest often. If you go to the Superthread on this forum, there is a ton of invaluable advice and info.  I am currently 6 months post treatment and doing so much better. Mine was HPV 16+, and I'm guessing yours likely is too. My advice is to avoid google (it will make you even more anxious) and stick exclusively to this forum. It is definitely what helped me keep my sanity, and still does almost every day. Stay positive and be strong. Trust your family, friends and caretakers. You'll need them. Eat as much as you can while you can. Not the time for losing weight or trying some new age diet. By the end of week two of rads, you will likely start feeling the pain when swallowing. Medicate as needed in order to get those calories.  Godspeed

Welcome, Mindy22Mike.  So glad you found this site rather than just diving into the internet.  Google will give you a heart attack and stroke on top of everything else!  On the other hand, you  need a place for down-to-earth firsthand info.  The doctors do what they can in the time that they have, but that time is woefully short.  For example, they may say "drink lots of water," but they won't hammer it in the way that we do.  Or they''ll say that radiation "might" give you "some" loss of saliva, and that there "might" be some mucus.  We'll let you know that these are likely to be main facts of life for quite awhile after treatment.  We'll let you know that others got through it.  When my husband was diagnosed, he didn't do any research at all.  I thank heavens I found this site and was prepared for all that came next.  Read the Superthread, along with your wife.  Try to take it one day at a time.  Head and Neck patients have been dealt a tough hand, but they are fighters, as you will see.     

Believe me, I know how ridiculous this advice is, but try not to worry too much. As others have said, the cure rate is very high for this type of cancer. Regarding the feeding tube and other side effects, they are going to be a little different for each person. Same with exact treatment methods. Different sets of Doctors use different treatment methods, but most seem to get us to same place, which is NO Cancer, so that's what really matters.

For myself, I had tonsil cancer on the left side, which had spread to a lymph node in the left side of my neck. I had a radical neck dissection and a tonsilectomy. You would think that the neck dissection would have hurt worse than the tonsils, but nope. Having tonsils out as an adult is not fun. But, it beats dying from cancer, so I said let's do it. After 5 weeks of recovery, we started radiation and chemo. Again, not fun, but better than dying from cancer, so I said let's go for it. Basically, my doctors said that because I was "young" in the scheme of things (46 years old), they wanted to treat it as aggressively as they could to make sure it would be GONE by the end of treatment. Because of my age, there should be many years of life ahead of me (and you too), in which to recover. I also have young children and do not have the luxury of being able to die. I am needed here still, so I was willing to do whatever was needed in order to keep me here for my kids. 

Honestly, I wouldn't worry about the feeding tube. Either you'll need it or you won't. If you don't need it, great. If you do need it, you will be happy to have it. I had one put in because I ended up in the hospital from dehydration and malnutrition. This was caused by mouth sores that were so severe that I couldn't even have water in my mouth without extreme pain. But not everyone reacts this way and your path may be less bumpy. If it is this bumpy, just don't wait until you lose 50 pounds and are severely dehydrated and malnourished before admitting the need for a feeding tube (like I did).

I'm a year out from the surgery now and about 7 months from the last of the treatments. I am not yet back to where I was either with weight or with saliva functioning, but the tube came out ages ago (only needed it for a few months or so). I can and do eat regular food but prefer to rely heavily on smoothies now. But you know what, there are worse problems in the world. I'm still here and hey, smoothies are healthy. 

You will need what you will need. The path on your road to recovery will have some bumps, maybe lots, maybe a few. Whenever it gets tough just keep reminding yourself, this isn't going to last forever. It will be over and if this is the price of being here for your little ones, then it is what it is. No big deal. It is all worth it because it will keep you here for your children and there is nothing more important than that. Nothing.

All the best of luck and a speedy recovery.

You might think this is worst case, but just might be typical. Surgery you described is to limit the C that Chemo & Rads will be fighting, so that's a plus. As for the nasal- I got zapped in 20 places for Nasopharyngeal, because of unknown Primary, so I know what that's like. Only hassle was the morning nose bleeds that were aced by packing torn-off Kleenex up my right nostril for some 15 minutes to help in clotting. 

Keep it in the positive. Your C team will work-out a plan for the Rads & Chemo, post-Op., and make sure you survive this thing w/minimal negative physical symptoms. All this means is it will be a bit more of a battle- you are going to survive this. Believe.

Hi Mindy, 

My husband was diagnosed with HPV+ squamous cell carcinoma last November. We were living in Nicaragua when my husband felt a small tumor under his ear on the right side of his neck. We had to take a ferry to the mainland to get a biopsy and when the results were in, we couldn’t get back to the mainland because a revolution had started and the highways were blocked and paramilitary were shooting people. 

Our friend called the doctor and the biopsy was benign. We packed a few suitcases, rented our beach house and left for the states because it was too dangerous to stay. Talk about stress! He had two more biopsies in the states...both benign. Our ENT surgeon removed the tumors..he found another teeny one on the left side of his neck. We had planned a 6 month trip to tropical places because it had been 10 years since we had experienced a cold winter when the ENT doc said, “You should wait for the pathology report. It could be malignant.” A week later the pathology report indicated our worst fears.

I canceled our trip and we told our renters they had to find another place to live because we were back. He had all of his teeth pulled on the recommendation of the radiation oncologist. His teeth were bad anyway. He started treatment January 2nd. 30 radiations and 3 cisplatan chemo treatments. We both felt like zombies! It was such a shock and so weird to enter cancerlandia. We were ordered from one doctor to another. When the chemo doc said he should have a PEG and a port, my husband objected. In fact, the doctor made an appointment for him to get his port and PEG and I called her and said, “Thanks, but no thanks.” She called my husband and asked him if he wanted to lose his tongue! She stressed the importance of the PEG with the standard treatment. So, he had the PEG and port inserted...just in case he needed it to get nourishment.

He was in a clinical trial for mucositis. He had weekly infusions of a drug that we both consider to be a miracle drug. After 30 radiation treatments he showed no sign of any throat problems. He could swallow without pain, no sores, just a little mucus he would hack up...hardly any side effects.  He was the poster child of the clinical trial! 

The 3 chemo treatments were scheduled 3 weeks apart. The day of chemo, he was pumped up with drugs so he was euphoric. The next 2-3 days, he slept a lot and had some nausea, but never vomited. THC edibles, tinctures, and vape were lifesaving. They made him feel better. They didn’t give him his appetite back, but he could relax and not stress about the treatments. We told his three doctors that he was taking THC just to make sure it didn’t interfere with the clinical trial or other treatments. 

My husband never took any medication stronger than Tylenol. He never had a need for it. I am not sure if it was the THC or the clinical trial infusions, but he never had any pain. During his treatments, he painted the downstairs of our house and scraped and plastered walls. We both got into a distraction mode to try to live outside of cancerlandia. And it worked! Our lives were filled with distractions to keep us busy. 

It has been over a month since his last treatment. He was using the PEG, mainly because it was easier to use since he lost his taste. Food repulsed him. So sad, really because he loved to eat. And he is an excellent chef! He watches the food channel and reads recipes online waiting for the day when he will regain his taste. He lost about 25 pounds, which is pretty normal. For a week now, he hasn’t used his PEG. I am into making smoothies. I can load them up with the weirdest combinations because he can’t taste yet. Avocado, Carnation instant breakfast powder, a tablespoon of olive oil, spinach, ice cream, vanilla protein drink, peanut butter...and he drinks them right down. He is slowly gaining weight. We have been watching YouTube videos on how to remove the PEG. Yikes! I think we will go back to the doc to have it removed in another two weeks. 

Next month, he will have teeth. He is getting stronger every day. Since it is finally spring, we are both into landscaping. He is trimming trees and planting flowers. Another wonderful distraction. He works a few hours, eats lunch, watches March Madness games, and takes a walk, then we settle in to watch Game of Thrones or Outlander...more great distractions. 

Cancer isn’t something I would wish on anyone...and throat cancer standard treatment is not easy and can have lasting side effects. But, so far, my husband has been fortunate. His PET scan is scheduled for May. We are very optimistic that the primary source teeny weeny dot of cancer at the base of his tongue is gone. I am planning our next trip...but, like always I will get travel insurance to cover us for the unexpected. 

My advice is to be patient, take one day at a time, find distractions and things that you enjoy doing, don’t feel guilty if all you want to do is sleep during your worst days, and be compliant with the treatment. You will have to do what the doctors say, which includes drinking an unbelievable amount of water every day to flush out your kidneys. I am so proud of my husband. He did it! 

Do NOT consult Dr Google, he is the WORST! or web MD, or anything like that!! Its very tempting I know, first thing I did was google, and then I clicked on mortality rates, then I panicked, which did me no good!

In the beginning - I have to say, I found the tests and waiting, and making masks, and "giving you a break before we start" horrendous. I just wanted it done, like.. Yesterday!

Not everyone has a feeding tube, not everyone loses a lot of weight, for proof, search for posts by Andy (where are you andy!?)

Are you taking anything for the GERD? I was told the meds for GERD and alligies, made my life somewhat easier.

I worked, not from home - I drove my area, all thru treatment. My son, was my caregiver. He threatened me with food, He cheered when I finished a boost, he looked on in amazement when I ate wendys chilli towards the end of treatment -( dont ask, I have no idea how I did THAT!)

As others have said, one day at a time.

This is time to divide up tasks like trash, and lawn mowing and other stuff you may not like, between your children!

OHH and EAT, Eat NOW, enjoy it, go out, eat anything and everything you like, make the most of it, because I'm sorry, its never going to be 100% the same again.

You got this, I truly believe, its all in the mindset, You already have the gotta do it attitude, now keep that going!

Your cancer, as you describe it, sounds very similar to mine.  It will probably be too big for surgery, so they will go radiation and chemo.  The odds are very high that you will live to see seventy, unless you have an unforturnate encounter with a bus.  I won't sugar-coat it, 35 hits of rad and 7 of chemo will be very sucky by the end.  BUT! You have come to the right place.  As Suzj says, minimize your google urge.  This discussion board is far and away the most intelligent you will find anywhere on this subject, and the odds are someone here has experienced exactly your latest condition.

I did 35/7, ended up spending 11 days in ER/ICU, lots of tubes, oxygen, last rites, etc.  That was two years ago.  Right now I'm trying to finish paperword from a conference I just ran, chainsawing deadfall from trees in the backyard, and packing for a trip to Aspen to use up the six days I have left on my Seniors Ski pass.  I ended up with a bit of dry mouth, some scar tissue from radiation burns, and losing all the weight I had failed to lose thru diet and exercise for twenty years.  My major life threat now is my wife, who still has to hit the treadmill every morning while I am sleeping in, still 45 pounds under where I started.

You will live to see old age, but still, look both ways crossing the street.