recently diagnosed

Isign4Him

Hi,
My name is Kevin Myhaver and I was recently diagnosed with scc of the tonsil, stage IVA as it has spread to Lymph nodes on both sides of my neck. So newly diagnosed that we only met with the Radiation-Oncologist for the first time last week and we are meeting with the Medical-Oncologist for the first time this coming Wednesday July 25, 2012. I had my left tonsil removed 3 weeks ago. I have mixed emotions, first I am not afraid of the cancer or dying(well maybe a little ) as I am saved by the Blood of Christ and trust God without exception. I mean I would like to continue my life, I have a wonderful wife a great family and a job that I love, it doesn’t get much better !My major concerns are how to fight this battle and to be successful in any scrap you have to know what you are facing. The reading material I was given at the Cancer Institute was as my wife said “a real load of sunshine" lol. Funny part of the story is my previous testimony. To make a long story short I had a rough and short childhood and grew up way to fast, got caught up in motorcycle gangs and drugs and several other not so nice behaviors. I should be dead or in prison but God had a plan for me and has blessed me immensely. (FYI I have been clean for 13 years and am now a nationally certified Sign Language Interpreter married to a great lady) The funny part of this story is the part where I have prayed for some time for God to make me a better witness lol, so beating this thing would add to my testimony. Lesson; be careful what you pray for because God does answer prayer, just not always in the way are feeble little minds expected. If any of you have or are experiencing the same thing I am I would like to hear from you. I feel like I am just following the Dr.s around like a little lost boy as I am ignorant to what is happening and not sure what choices I should make in regards to my treatment.And I wonder about the QOL issues after. Well, didnt mean to write a feature length screen play so I will stop here if anyone is willing to share it would be a blessing to me I am sure.

In Christ, Kevin

meaganb

Kevin, I had a different
Kevin, I had a different type of cancer than you but I think there are others on this board who have dealt with your specific type of cancer. My guess would be that since you have already had surgery you will probably have chemo combined with radiation. Treatment can be very rough. I only had Rads and not chemo so I had it relatively easy, but trust me it was no cakewalk. There is a superthread that I think Skiffin usually links up and that can answer your questions in pretty good detail. Your faith in Christ will serve you well. I love Jesus and that along with some amazing community has carried me through some pretty hard times. Stay positive and continue to gather as much info as you can. I'll be praying for you!

NoDuck

Welcome
Kevin -- welcome to the club no one wants to belong to. You will found lots of info here but just as importantly, lots of folks who have been where you are and where you are going who will help you every step of the way.

My hubby has stage 3 SCC left tonsil HPV+ with 3 lymph node involvement. He just finished treatment last week. His course of treatment was 34 radiation treatments and 2 Cisplantin chemos (was scheduled for three for was hospitalized for a bacterial infection and unable to do the last one.) others on here had rads and Erbitux chemo. They will chime in.

Here are our suggestions which come out of our experience:

Be confident with your cancer team. Get more than one opinion. We did not go with the first doctor we saw and very glad we got that second opinion. The treatment plan was not much different,it was just the level of comfort we felt with the second doc and his team.

Chemo and radiation together or concurrently is the norm and is an extremely difficult treatment. I don't care how big, tough or strong you may be. It will kick your butt. Head and Neck Cancer has a generally good prognosis but the side effects from the treatment plan are horrific. Keep that good wife of yours close. You will need her and your faith to get through this.

I won't address your chemo because you don't know which you might get. Radiation treatments are as bad or worse than chemo. If your doc offers a peg tube take it. If he doesn't, ask for one. The peg tube will be a life saver to get you the needed nutrition and hydration when your throat is too sore and raw to even sip water. Our doc said 9 out of 10 get the peg and the 10th one wishes they had. You may never need to use it. Great. But it is there if you need it. And get it before treatment. Don't wait until you need it. You may be too weak, sick, dehydrated to get it and it may cause a gap in your treatment.

We are here to help, support, listen and are never short on opinions or prayers. Have your wife read these posts too. It is a great comfort to the patient and caregiver to know others have taken this same bus ride and are waiting at the bus stop to welcome you at the end of this journey.

God bless.
Deb

ggpierce

scc diagnoses
Hi Kevin, I too was diagnosed with scc of tonsil, mine the right. This was 3.5 years ago. I had the tonsil removed, and a bit of tissue around it. then a month later had a radical neck disection of the right side, and they also went back in my throat and cut out a 3" margin to be sure all of the tissue was removed. Then had 25 radiation treatments. I was first told I couldn't have radiation since I had radiation 24 years ago, but then they changed their minds and said I could. It was a tough road, I still have several side effects hanging on, dry mouth, teeth fell apart, stiff neck,etc. But I am a survivor. This was my 3rd go with cancer, the first two were hodgkins disease 24 years ago.

Best of luck to you, keep your head up, mind positive, you will do great!

Isign4Him

meaganb said:

Kevin, I had a different
Kevin, I had a different type of cancer than you but I think there are others on this board who have dealt with your specific type of cancer. My guess would be that since you have already had surgery you will probably have chemo combined with radiation. Treatment can be very rough. I only had Rads and not chemo so I had it relatively easy, but trust me it was no cakewalk. There is a superthread that I think Skiffin usually links up and that can answer your questions in pretty good detail. Your faith in Christ will serve you well. I love Jesus and that along with some amazing community has carried me through some pretty hard times. Stay positive and continue to gather as much info as you can. I'll be praying for you!

I have had no surgery... my
I have had no surgery... my Dr. told me surgery was a last resort..

Isign4Him

Isign4Him said:

I have had no surgery... my
I have had no surgery... my Dr. told me surgery was a last resort..

Also I was wondering..Im not
Also I was wondering..Im not sure I understand HPV thing..the way I understand it was if Im HPV positve then 2 or 3 rounds of chemo before the rad and then I wont have to have chemo with the rad..however if Im HPV - then Ill have to have both..does this sound right or am I confused ?

meaganb

Isign4Him said:

I have had no surgery... my
I have had no surgery... my Dr. told me surgery was a last resort..

Sorry, read that you had
Sorry, read that you had your tonsil removed and assumed that was surgery:) looks like others have chimed in with pertinent info

Isign4Him

meaganb said:

Sorry, read that you had
Sorry, read that you had your tonsil removed and assumed that was surgery:) looks like others have chimed in with pertinent info

lol well I guess it was
lol well I guess it was surgery but not the kind I meant lol....the cancer started in the left tonsil so they removed it to biopsy

Isign4Him

meaganb said:

Sorry, read that you had
Sorry, read that you had your tonsil removed and assumed that was surgery:) looks like others have chimed in with pertinent info

lol well I guess it was
lol well I guess it was surgery but not the kind I meant lol....the cancer started in the left tonsil so they removed it to biopsy

boardwalkgirl

Sorry you have to join us
Sorry you have to join us but you have come to the right place for information and support. I have Stage IV scc with unknown primary HPV+ but they didn't know that until I had already started treatment. Both of my doctors tell me that is actually a good thing as people that are HPV+ seem to respond better to treatment. I would agree with previous posts about the peg tube, get one. I had my mind totally set against one and was in tears when the doctor said I needed to get one before I started but I am glad I did. I am 7 treatments away from being done and I am not totally dependent on it but it definitely takes the stress away from having to force everything down by mouth. I am using 3 cans a day and eating 3 times a day some and maintaining my present weight. I have loss about 10 lbs so far and I could stand to lose that. Also I would recommend you see your dentist before starting radiation. They can do things to protect your teeth. Stay positive and allow people to help you. That was very hard for me, I am a pretty independent person, so depending on others witll be tough, but it will be a huge help. Will be praying for you.

Skiffin16

Welcome...
Like you or similar, I was Dx STGIII SCC Tonsils and a lymphnode (same side, right)....HPV+.

No sourgery other than the tonsils coming out..Dx on Jan2, 2009, tonsils out on the 5th.

First, both treatment, recovery and survivorbility are very doable, and pretty successful also.

That being said, "everyone is different"....

For me, my Tx involved nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU. That followed with an additional seven weeks of weekly concurrent Carboplatin and daily radiation and Amifostine Injections in the stomach.

I don't think there is really a standard treatment if you are or are not HPV+. I think it is pretty much the same regardless.

As for being ignorant, I think we are all pretty much initially....but the learning curve is fast.

After you've been poked, probed, protted and paraded with your butt hanging out the back for a few weeks...you'll be right at home.., no morality here, LOL.

Concerning quality of life...well for myself and many others here, after three plus years, things are pretty much as before.

Cancer aware, very....., but saliva is back 95% taste is at 100%, not on any meds, life is good.

Now it did take a few years to get there, but most of that was back within six months or so. It just took the taste and saliva nearly two years to get where I am now.

Stay positive, gather your resources and the people you can count on, and just stay focused on treatment, healing, recovery and surviving....

Here's a link to the SuperThread, tons of useful information compiled to a single thread...most of these are contributions from the many here.

SuperThread

As for the PEG, some swear by it, others as myself were not prescribed and did just fine without it.

My suggestion, if you are prescribed it, already have issues with weight or something else going on definitely discuss it with your MD's.


Best,
John

phrannie51

Hi Kevin....sorry you have to join this club.....
I don't have tonsil cancer, but stage III naso-pharyngeal cancer (behind the nose)....Treatment for head and neck cancer seems to be very similar with differences depending on where it is, stage, etc. I can guarentee you will get thru treatment, and come out the other side...it's just getting to that other side can get dicey. That's why being part of a group like this has saved my butt....I have not missed a day of being here since March. The people are so knowledgable, so practical, so inspiring, and so wise....they will help you immensely getting thru treatment.

I had concurrent Cisplatin chemo-therapy and 35 rads, and now am on 3 more chemo's of Cisplatin and 5FU...I will finish at the end of August...I did get the PEG tube before I started treatment, mostly because I had no weight to lose. I didn't use my tube all thru treatment, but since I've finished radiation, I've had to use it exclusively (go figure)...glad I had it in already.

When you find out your treatment plan, post it here....I think you will find you will be getting nearly the same as many here have done or are going thru at the same time as you.

p

Oh...wanted to congratulate you on being clean and sober....I lived a life much like yours for many years, and then I too got clean and never looked back!!

Laralyn

Same diagnosis!
I had stage IV SCC of the left tonsil and it had grown into my soft palate as well. I had 35 IMRT radiation sessions, and weekly low-dose Cisplatin rather than the three large doses. My doctors made that decision because my cancer was HPV positive--so that's an important question to ask!

To echo what other folks here have said, don't hesitate to get a second opinion. Your doctor shouldn't be offended and if he is, then that's a sign that you need a different doctor. Do some research on treatment facilities in your area that specialize in head and neck cancer and have expertise with IMRT or tomotherapy, because it's a relatively rare location for cancer and expertise can make a huge difference in terms of accurate mapping to try to spare your tongue and salivary glands.

I had a PEG tube put in, and it was the right decision. The radiation made my epiglottis inflamed and made swallowing tricky, and the PEG tube was invaluable. I'm seven weeks out from treatment, and still take pretty much all my nutrition from the tube. I'm hoping to be cleared for eating more by mouth this week, but I know it will be a slow transition.

Don't hesitate to come here with questions or just to talk. It's a great group!

hwt

Laralyn said:

Same diagnosis!
I had stage IV SCC of the left tonsil and it had grown into my soft palate as well. I had 35 IMRT radiation sessions, and weekly low-dose Cisplatin rather than the three large doses. My doctors made that decision because my cancer was HPV positive--so that's an important question to ask!

To echo what other folks here have said, don't hesitate to get a second opinion. Your doctor shouldn't be offended and if he is, then that's a sign that you need a different doctor. Do some research on treatment facilities in your area that specialize in head and neck cancer and have expertise with IMRT or tomotherapy, because it's a relatively rare location for cancer and expertise can make a huge difference in terms of accurate mapping to try to spare your tongue and salivary glands.

I had a PEG tube put in, and it was the right decision. The radiation made my epiglottis inflamed and made swallowing tricky, and the PEG tube was invaluable. I'm seven weeks out from treatment, and still take pretty much all my nutrition from the tube. I'm hoping to be cleared for eating more by mouth this week, but I know it will be a slow transition.

Don't hesitate to come here with questions or just to talk. It's a great group!

Sorry
Hate to hear you have to make this journey. You will hear of all the side effects, know you will get some but not likely all. And they come in varying degrees. My best advice is to "take it as it comes and deal with it". Don't spend too much energy worrying about things that may or may not happen. Congrats on being clean! I think we have all relied on drugs to get us thru this miserable Tx, so be sure to share your history with the doctors. God Bless

Tonsil Dad

Skiffin16 said:

Welcome...
Like you or similar, I was Dx STGIII SCC Tonsils and a lymphnode (same side, right)....HPV+.

No sourgery other than the tonsils coming out..Dx on Jan2, 2009, tonsils out on the 5th.

First, both treatment, recovery and survivorbility are very doable, and pretty successful also.

That being said, "everyone is different"....

For me, my Tx involved nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU. That followed with an additional seven weeks of weekly concurrent Carboplatin and daily radiation and Amifostine Injections in the stomach.

I don't think there is really a standard treatment if you are or are not HPV+. I think it is pretty much the same regardless.

As for being ignorant, I think we are all pretty much initially....but the learning curve is fast.

After you've been poked, probed, protted and paraded with your butt hanging out the back for a few weeks...you'll be right at home.., no morality here, LOL.

Concerning quality of life...well for myself and many others here, after three plus years, things are pretty much as before.

Cancer aware, very....., but saliva is back 95% taste is at 100%, not on any meds, life is good.

Now it did take a few years to get there, but most of that was back within six months or so. It just took the taste and saliva nearly two years to get where I am now.

Stay positive, gather your resources and the people you can count on, and just stay focused on treatment, healing, recovery and surviving....

Here's a link to the SuperThread, tons of useful information compiled to a single thread...most of these are contributions from the many here.

SuperThread

As for the PEG, some swear by it, others as myself were not prescribed and did just fine without it.

My suggestion, if you are prescribed it, already have issues with weight or something else going on definitely discuss it with your MD's.


Best,
John

Hi Kevin.
Hi Kevin, first of all let me congratulate you on being clean
for 13 years, great achievement. Next welcome to our little
slice of the internet, great place to be and great info from a
great bunch of people. I was dx with high stage II tonsil and
only had 33 rads, and yes I wouldn't call it a walk in the park
but for me it was very doable. I'm having the wonderful side
effects of the rads but I knew that going into it. I also know
that God held my hand throughout and saw me to the other
side and continues to do so, and I thank him everyday.
As I said it is very doable just stay positive and have faith ( it
seems you do ) and you will get through. It sounds like you
have I wonderful wife and family so theres all the inspiration
you need.

God bless
Tonsil dad,

Dan.

CivilMatt

welcome
Hi Kevin,

I’ve read through your introduction and from what I read you already know what you are facing (cancer) and you have a good handle on how to fight the battle (faith and treatments).

The reading material was “a real load of sunshine”, mater-of-fact right after handing me the sunshine material they snapped a picture of me for the file (picture I.D. for radiation treatments). I looked like a ghost. That picture might be the worst picture taken of me in my life.

You’ve lived an eventful life; we all have to varying degrees. You are on a good path now and your faith will help carry you through this unknown. To bury your head in the sand would be to give up. Instead, you’ve sought out information to help overcome these obstacles.

Remember to ask lots of questions (here and at the doctor, nothing is off limits). Don’t over think the cancer, you don’t deserve it and neither does anybody here. Trust your doctors (you will know). I am still following them around like a little boy (except now I’ve graduated).

Try to stay happy, it is god for you and everyone around you. Some people will make the dumbest comments (I think they are uncomfortable).

Best,

Matt

Tim6003

hwt said:

Sorry
Hate to hear you have to make this journey. You will hear of all the side effects, know you will get some but not likely all. And they come in varying degrees. My best advice is to "take it as it comes and deal with it". Don't spend too much energy worrying about things that may or may not happen. Congrats on being clean! I think we have all relied on drugs to get us thru this miserable Tx, so be sure to share your history with the doctors. God Bless

Hi Kevin...
Sorry you have to be here. Congrats on being clean for 13 years!

John (Skiffin) posted a SUPERTHREAD - be sure and click in that and take a look thru it all ..great stuff.

Do be sure and ask if your cancer is HPV+ -

Ask if your cancer is slow, moderate or fast growing too (mine was moderately differentiated) if I spelled that correctly?

Do be sure and get more than one opinion on your treatment and be sure they explain why they are choosing the plan they are.

I had a feeding tube put in my stomach before I even started treatment, did not really want one but they HIGHLY suggested I get one, I deferred to their experience and I am glad I did. I lost 70lbs in treatment and to date have lost a total of 85lbs.

I was diagnosed base of tongue cancer October 21, biopsy performed November 11, and treatments started November 21 2011. My cancer was HPV+ I had one lymph node involved (base of tongue was primary)

I had NO surgery and NO platnium chemo drugs ...just Erbitux and Radiation. Take a look at the picture of my neck ...mine was pretty bad, but keep in mind each persons body reacts differently ...I only share that so you will be prepared.

Your worst time (most of the time) will be the immediate month of two AFTER radiation when your radiated area continues to "cook" for several weeks.

My last radiation was January 20, 2012 and I have had one clean scan (3 months after last radiation) and several scopes / finger exams that have come back good.

I relied heavily on the Lord, my family, church family, friends from the community and of course the doctors ...all were wonderful. It was the worst thing I have ever been through in my life, but I can honestly say I am so much more thankful for everything in my life now than ever before (and I always was thankful anyway)

Holding my wife and children's hand(s) ..sitting with them and watching them play.....taking a drive in the country, etc., etc.. all mean soooo much more now ...the grass has never been greener nor the sky bluer.

Keep us posted ...

Best,

Tim

Kent Cass

CivilMatt said:

welcome
Hi Kevin,

I’ve read through your introduction and from what I read you already know what you are facing (cancer) and you have a good handle on how to fight the battle (faith and treatments).

The reading material was “a real load of sunshine”, mater-of-fact right after handing me the sunshine material they snapped a picture of me for the file (picture I.D. for radiation treatments). I looked like a ghost. That picture might be the worst picture taken of me in my life.

You’ve lived an eventful life; we all have to varying degrees. You are on a good path now and your faith will help carry you through this unknown. To bury your head in the sand would be to give up. Instead, you’ve sought out information to help overcome these obstacles.

Remember to ask lots of questions (here and at the doctor, nothing is off limits). Don’t over think the cancer, you don’t deserve it and neither does anybody here. Trust your doctors (you will know). I am still following them around like a little boy (except now I’ve graduated).

Try to stay happy, it is god for you and everyone around you. Some people will make the dumbest comments (I think they are uncomfortable).

Best,

Matt

Kevin
Welcome to this site, though I am sorry you have cause to be here. By your history- you'll be able to handle this okay. Depending on your C and treatment specifics- that's what'll likely determine the physical severity of the fight you are about to go thru with C&R, which is the standard for H&N. Best advice I can give is to keep your Drs in the Loop as to how you are physcially handling it all, and Nutrition, Nutrition and Hydration. Survival rate for H&N, if caught early enough, is very high, so you're gonna be okay. Might just be an obstacle in the road for you to roll up your shirtsleeves and get angry about. You will survive this, so keep that bigtime Positive in mind and never stop moving forward. And-

Believe

kcass

tommyodavey

Kent Cass said:

Kevin
Welcome to this site, though I am sorry you have cause to be here. By your history- you'll be able to handle this okay. Depending on your C and treatment specifics- that's what'll likely determine the physical severity of the fight you are about to go thru with C&R, which is the standard for H&N. Best advice I can give is to keep your Drs in the Loop as to how you are physcially handling it all, and Nutrition, Nutrition and Hydration. Survival rate for H&N, if caught early enough, is very high, so you're gonna be okay. Might just be an obstacle in the road for you to roll up your shirtsleeves and get angry about. You will survive this, so keep that bigtime Positive in mind and never stop moving forward. And-

Believe

kcass

Welcome Here
Hey Kevin,

I'm a little late in seeing this post but I too want to welcome you here to the CSN site. This has been my support site since being diagnosed and it's helped tremendously.

My cancer is a wee bit different but most head and neck cancers are treated similarly. Chemo, radiation, and surgery are the options lately and your doctor knows what's best for your condition.

Stick around and post often. This is a great group of survivors and you'll be one too in short time.

Tommy

Pam M

Late to the Party
Hello. Do Well. Keep us updated. You can do this.