NEW TO THE GROUP (unfortunately) - Tonsil Cancer

KRISTENINTX

My dad (51yo) was recently diagnosed with Stage 4 tonsil cancer. It has spread to the lymph nodes on the same side, and they see a tiny spot on his lungs. He has completed the full neck dissection and the removal of the tonsils. Also, he had his teeth pulled in preparation for radiation. He begins Radiation and Chemo (cistiplan) next week. I am a nervous wreck. I would love to hear everyone’s personal stories of this specific cancer. I know every person responds differently to the treatment, but what can I expect?

longtermsurvivor

Hi Kristen
No one wants to be here, but it is better to be here than to have to fill in all the blanks yourself. You will find a lot of help on this board.

What has been done to diagnose this spot on his lungs? Has he had it biopsied, or what has happened to make them certain it is metastatic throat cancer? Ultimately, this will make a huge difference in his treatment, and prognosis.

Welcome to the group. You've come to the right place.

Pat

KRISTENINTX

longtermsurvivor said:

Hi Kristen
No one wants to be here, but it is better to be here than to have to fill in all the blanks yourself. You will find a lot of help on this board.

What has been done to diagnose this spot on his lungs? Has he had it biopsied, or what has happened to make them certain it is metastatic throat cancer? Ultimately, this will make a huge difference in his treatment, and prognosis.

Welcome to the group. You've come to the right place.

Pat

lung spot
Hi Pat, thank you for the response. The spot showed on a PET scan, but they said they are not too concered about it. They are just going to watch it over time.

Kristen

osmotar

Tonsil
Hi and welcome. I was diagnosed with rt tonsil cancer (primary site) in June 2011,( never smoked and don't really drink, except for a glass of wine once or twice a year), after finding a small lump on the right side of my neck. ENT removed only the rt tonsil, and refered me to my chemo doc, who I saw a week later. Went thru 3 infusions of cisplatin/taxotore/5FU , 1 infusion every 21 days. I am currently in radiation, having completed so far 25 of 39 treatments, plus 1 weekly infusion of carboplatin. Have been very fortunate so far that I have had a few issues with the chemo but nothing major, other than my neck getting red from the radiation, still eating ok with out much taste left, all is well so far, no issues with the mask. I have done everything the doctors have said, from oral care, rinsing mouth several times a day I starrted with the baking soda/salt and now use caphosol (perscription), tell your dad to stay hydrated , eat well even though it may have no taste or use nutritional supplememts, Boost , Boost Plus, ensure, etc, get plenty of rest and keep a positive attitude. This site and those that are on it are a wealth of information. Don't be afraid to ask anything. This isn't always the easiest of treatments and as the others will say everyone is different...take one day at a time, make notes, ask questions, and sooner than you think your dad will be thru with his treatments.

Good luck, blessings and light.

Linda

ratface

osmotar said:

Tonsil
Hi and welcome. I was diagnosed with rt tonsil cancer (primary site) in June 2011,( never smoked and don't really drink, except for a glass of wine once or twice a year), after finding a small lump on the right side of my neck. ENT removed only the rt tonsil, and refered me to my chemo doc, who I saw a week later. Went thru 3 infusions of cisplatin/taxotore/5FU , 1 infusion every 21 days. I am currently in radiation, having completed so far 25 of 39 treatments, plus 1 weekly infusion of carboplatin. Have been very fortunate so far that I have had a few issues with the chemo but nothing major, other than my neck getting red from the radiation, still eating ok with out much taste left, all is well so far, no issues with the mask. I have done everything the doctors have said, from oral care, rinsing mouth several times a day I starrted with the baking soda/salt and now use caphosol (perscription), tell your dad to stay hydrated , eat well even though it may have no taste or use nutritional supplememts, Boost , Boost Plus, ensure, etc, get plenty of rest and keep a positive attitude. This site and those that are on it are a wealth of information. Don't be afraid to ask anything. This isn't always the easiest of treatments and as the others will say everyone is different...take one day at a time, make notes, ask questions, and sooner than you think your dad will be thru with his treatments.

Good luck, blessings and light.

Linda

is this a Rerun?
Hi Kristen

I was diagnosed at 51y/o with base of the tongue and spread to the right cervical nodes. My first PET found a 9mm granuloma on my upper lung lobe on the right side. Since then they have found some scattered lung spots, at least four more. Last time around they found a spot on my Thyroid. This was in 2009. Fast forward to today and the head cancer is gone and the lung spots and thyroid spots unchanged. He has to start following this road, treatment first then they watch the spots. Then they compare to the baseline, what we know today. It's like overlaying star charts to see what's new or moving. It's entirely possible that the spots were there before the cancer from something else like histoplasmosis. Right now they go after what is known. You are a great daughter and he should be very proud. It's quite possible that 2 years from now he can grow up to be just like me.

KRISTENINTX

ratface said:

is this a Rerun?
Hi Kristen

I was diagnosed at 51y/o with base of the tongue and spread to the right cervical nodes. My first PET found a 9mm granuloma on my upper lung lobe on the right side. Since then they have found some scattered lung spots, at least four more. Last time around they found a spot on my Thyroid. This was in 2009. Fast forward to today and the head cancer is gone and the lung spots and thyroid spots unchanged. He has to start following this road, treatment first then they watch the spots. Then they compare to the baseline, what we know today. It's like overlaying star charts to see what's new or moving. It's entirely possible that the spots were there before the cancer from something else like histoplasmosis. Right now they go after what is known. You are a great daughter and he should be very proud. It's quite possible that 2 years from now he can grow up to be just like me.

Thank you
Thank you all very much for the encouragement. I feel better after reading stories of people who have made it though to on the other side side of treatment. One of my biggest worries was the lung spot, so I am glad to hear that it may not be as dire as I thought.

Goalie

KRISTENINTX said:

Thank you
Thank you all very much for the encouragement. I feel better after reading stories of people who have made it though to on the other side side of treatment. One of my biggest worries was the lung spot, so I am glad to hear that it may not be as dire as I thought.

The place to be
Kristen, many of us here on the board had this or something very close including this stage. I had rads, chemo, neck dissection, tonsillectomy (not in that order) and I write this from a working trip to Beirut. Earlier this year I played in the Senior Olympics. Exactly a year ago I was just barely getting around and, having just finished rads and chemo, was just beginning to eat and gain back weight. I also had "spots" at one point but they turned out to be nothing. The blood clots, on the other hand, were not nothing.

The bad is that for most of us it was a couple of months of hard life (he**, if you will) and more months climbing back up. The good news is that "our" cancer is VERY survivable. You will see your father for many Christmases to come.

The best thing you can do is look for Sweetblood's Superthread here on the board as it has the collective wisdom of everyone who has been down this road before. Why not have him read and post on here as well? Experiencing the encouragement first-hand would do him a world of good. Meanwhile, give him big hugs from all of us; I loved it when my kids did that for me. Doug

tommyodavey

KRISTENINTX said:

Thank you
Thank you all very much for the encouragement. I feel better after reading stories of people who have made it though to on the other side side of treatment. One of my biggest worries was the lung spot, so I am glad to hear that it may not be as dire as I thought.

Spots
I'm with everyone here saying to treat what you know and try not to worry about the unknown. My PET scan showed something positive in my colon and suggested further testing of the area. My doctor is not concerned and said it is probably just fecal waste. (wasn't quite sure how to state that)

But of course it worries me and my wife. I'll have my primary physician look at it and if he isn't concerned I'll let it drop.

I'm sorry about your cancer but glad you found us here. I am part way through mine. Had a 4cm tumor removed from the base of my tongue last month and my next surgery is for a right neck lymph node and surrounding ones. Then radiation.

Right now I'm just glad I can swallow again.

Tommy

jim and i

welcome Kristen
Sorry you have to deal with a loved one who has cancer. Are you your father's caretaker? My husband finished treatment mid August for stage four base of tongue. He is 77 years old and the treatment was rough on him. Your father is still young so he should have a pretty easy time. Sweetblood's super thread will is a wealth of information and if you have a question about a side effect there seems to be many others who experienced it to reassure you. I could not have gotten through this time without these caring people. Reading others post nd just writing to whine is always helpful and welcomed here so feel free to post. Praying for you and your family.

Debbie

Skiffin16

Rough Road, Doable and Survivorable
Hi Kristen, same as a lot of the others have posted for me as well.

Similarly to your father (only a few yeasr older), I was Dx in January 2009.

STGIII Tonsil Cancer, SCC, HPV+ also a lymphnode on the same side.

I had the tonsils out, no dissection, no PEG...sixteen weeks of chemo (cisplatin, taxotere and 5FU). Seven of those were concurrent chemo (carboplatin)/35 daily rads.

I finished up treatment Jun2009...so far all scans have been clean and clear.

It's rough, especially about the 3-4 week of chemo/rads and the 3-4 weeks post rads.

It took nearly 2+ years to start feeling like my old self and for the saliva and taste to come nearly completely back. I did have improvements on those along the way, just in very slow progressions.

As far as expectations, everyone is different as you mentioned, so are the side effects and recovey.

Staying positive, focused, lots of rest and very important is to stay hydrated...that can't be stressed enough.

The rest can be explained and addressed when and if encountered.

Check out Sweetblood's SuperThread, it's an excellent compilation of Information that you'll find very useful;

SuperThread

Welcome to the forum...

Thoughts and Prayers,
John

Hondo

Hi Kristen
Don’t be afraid Cancer is not a death sentence it is just a part of life that some people have to go through. Be there for your Dad and give him all the help and support that he is going to need. Going through this treatment is not easy but it can be done and life after cancer is just as good as before.

Wishing you both well
Hondo

Jimbo55

Welcome
Hi Kristen,

Sorry to hear of your fathers plight. I had base of tongue cancer and went through concurrent chemo(cisplatin) and radiation. Yes treatment was not fun, but it is certainly doable and well worth it. I am over 1 year post treatment and doing excellent.

I would highly recommend your father try to stay active during treatment. Moderate exercise has been shown to have a positive influence in reducing the severity of side effects and helping to combat the fatigue that usually comes along with the treatment. Nothing too strenuous mind you, but a daily walk or something similar. Just getting out of the house and taking a walk in the woods also had a positive impact on my mental state of being during treatment.

Hope all goes well. Cheers.

Jimbo

Greend

Sixteen year survivor here
Exact same cancer and treated over 15 years ago and the treatments have gotten better since then. A rough few months ahead but this cancer can and is normally cured.

Good luck and this board is the place to vent you concerns/frustrations, ask questions and get some pretty good ideas whenever problems arise.

Mikemetz

My own story
Kristen,

As your dad has probably already learned, everyone's story is unique. There are some commonalities, but a lot more differences in terms on how each person's body reacts to the the treatments, and how each person approaches this challenge. When I was first diagnosed I started a blog, that turned out to be a diary of sorts. If your dad wants to read my story, he can go to: http://mikemetzlerbeatscancer.blogspot.com/. My chemo was cisplatin, so we have something more in common.

Mike

Pam M

Hello - Take Heart
Stage Four Head and Neck Cancer is NOT a Death Sentence. Many of us on this site were at one time considered stage four. Even though I had base of tongue cancer with two lymph nodes involved I had basically the same treatment as John who had tonsil cancer - open biopsies with tonsillectomy (only one tonsil taken, though), induction chemo, chemo radiation. Unlike John, I also had a PEG feeding tube for a while, and had a radical modified neck dissection nine months after treatment to remove all the lymph nodes on the right side of my neck (in my case, this was five - seems to me most folks have over twenty in this area, but we're all different). Like almost everyone here, I had some bad days during treatment. What helped me a lot was to do countdowns. During radiation, I'd say "35 days. This is 35 days of your life, then you don't have to go through more treatment." I kept reminding myself that most folks started feeling better two to four weeks after treatment ended. I'm a year and a half out of treatment, one year since my last surgery and I'm doing very well. Good your Dad has you on his side.

Oh - DON'T believe everything you Google about cancer. Seems most of us that try to look up info on "our" cancer early on find lots of horror stories. Do well.