Any Info will help

DM1

 

I am new to this and have read a lot of positive information. I have just been diagnosed with left tonsil and left lymph node stage III cancer. C.T. scan done and 2 biopsies of the tonsil . My EN&T DR. does not want to do surgery due to to much reconstruction. I have my PET scan this Friday 01-31-2014. After this it's a 2 week wait to see the oncologist, the waiting seems like forever. Can anyone shed any info for me . My name is Mike. 

Ladylacy

Doctors

While my husband's cancer started as laryngeal cancer diagnosed by our local ENT.  When it was discovered after radiation and chemo that the tumor was still there, our ENT (for which we are very grateful) referred us to a head and neck specialist.  Our ENT said that this type of specialist was better equipped to do the surgery needed and that included any reconstruction that was needed.  Thankfully he referred us because the radiation completedly closed off the back of his throat and it had to be reconstructed.

Yes we had confidence in our local ENT but he said flat out that he didn't do that surgery anymore and that a head and neck specialist was who we needed to see.  We were very lucky because the one we were referred to is great and has years of experience.  Another thing get a second or even third opinion.

Actually I don't understand about the reconstruction surgery.  There are many on here that have had the surgery for your type of cancer and hopefully they will respond shortly.

Sharon

Grandmax4

2nd opinion

My first question is, are you at a large cancer center? The surgery techniques have improved vastly in the last couple years. I had a full radical dissection, done by my surgeon, using the de vinci robot. My surgery was removal of a cancerous mass and my epiglottis, plus nodes. I was blessed that the nodes had not been invaded and did not have to have chemo or radiation.

For your peace of mind, I would get a second opinion~~ you did not say where you are located, but many states have large,modern hospitals 

CivilMatt

i have stood where you are standing

Mike,

Welcome to the H&N forum, sorry you find yourself here.

You are just getting started and sound like you may benefit from a second opinion from a team experienced in treating you type of cancer.  Once you are satisfied with your team selection, your choices of treatment usually boil down to surgery, radiation & chemo, either singularly or in combination.

Stay upbeat, your cancer is very treatable and your team will help you make the correct choices and in several months you will be on the back side of treatment and moving toward your new-normal.

Matt

j4mie

I would agree with

getting a second opinion. My husband had left tonsil cancer with left lymph node involvement. He was stage IV when diagnosed. He had surgery with the Divinci robot, and ended up with a complete tonsilectomy, remolval of 29 lymph nodes, and some surrounding tissue/muscle in the area. He handled the surgery fine. After healing from surgery, he underwent 30 radiation treatments. At this point there is no evidence of disease.

A second, or even third, opinion never hurts, especially when dealing with something like this...

Jamie

PS- I just want to say also that this is very treatable and the prognosis is very good. You will get through!

debbiejeanne

Hi Mike, my cancer was

Hi Mike, my cancer was different so can't add anything except that I agree with the others, get a second opinion.  I just wanted to welcome you to our group of caring, knowledgeable and uplifting people.  You've found a good place to be and many here have had your type of cancer so you will find lots of help here.  I hope you stick around.

God bless,

dj

DM1

Thank you

Thank you everyone who has replied Tomorrow will be my PET scan then 2 appointments with the DR.s next Thursday and Friday. I guess after that will be the plan on how to beat this. I am 50 years old and only weigh 145 lbs. I read that a lot of people loose lots of weight which is another concern for me. Thank you again everyone.

 

 

Mike

KB56

Info

Mike, sorry you're here but you will find this site very useful.  I had right tonsil cancer and right lymph node involvement, stage IV when it was found.  I had a tonsillectomy but they didn't want to do a neck dissection because they said the lymph nodes were wrapped around so much stuff in the neck it ws very risky.    I had 7 chemo treatments with Erbitux and 34 radiation treatments that finished 6/11/13.   7 months later i have had 2 scans (one PET and one CT) and both were clean so the treatment was every effective for me.  So far so good! 

Our cases sound very similar except mine was one stage advanced and they felt the chemo and radiation would be very effective against the type of cancer I had and they did not want to do surgery. Do you know if your cancer is HPV based or not?  The HPV based cancers are very responsive to chemo and radiation and the long term survival rate is very good.

The wait can seem like forever but I'm sure they want to do the PET to see if it is anywhere else in the body to decide a treatment plan.  If it's isolated to your lymph nodes in your neck then surgery may not be necessary and chemo/radiation make elimate it from your body.  If you could avoid a neck dissection with all the reconstruction, AND get rid of the cancer with chemo/radiation, you will be much better off long term.

Good Luck

Keith

 

 

donfoo

Welcome Mike

Hi Mike,

Welcome to CSN. Great place with lots of good folks and lots of good info. Start reading the superthread, it hits many common topics. Ditto on the HPV+ question, which has great outcomes. Glad you joined early as you can get a lot more informed and guide your treatment plan along a path that offers you the most comfort.

Getting second opinions is often very useful, especially in cases where your primary doctors and facilities do not treat a lot of HNC. At the very minimum, you want a team approach so your case is reviewed by a range of doctors and the recommendation is coming from multiple doctors. If this is not the setup now, number one on your list is to start exploring options to get more input and review on your case.

The wait is a pain for sure, once treatment starts things move along quickly as you will likely be dealing with many common side effects.

Good luck and visit often,

Don

DM1

KB56 said:

Info

Mike, sorry you're here but you will find this site very useful.  I had right tonsil cancer and right lymph node involvement, stage IV when it was found.  I had a tonsillectomy but they didn't want to do a neck dissection because they said the lymph nodes were wrapped around so much stuff in the neck it ws very risky.    I had 7 chemo treatments with Erbitux and 34 radiation treatments that finished 6/11/13.   7 months later i have had 2 scans (one PET and one CT) and both were clean so the treatment was every effective for me.  So far so good! 

Our cases sound very similar except mine was one stage advanced and they felt the chemo and radiation would be very effective against the type of cancer I had and they did not want to do surgery. Do you know if your cancer is HPV based or not?  The HPV based cancers are very responsive to chemo and radiation and the long term survival rate is very good.

The wait can seem like forever but I'm sure they want to do the PET to see if it is anywhere else in the body to decide a treatment plan.  If it's isolated to your lymph nodes in your neck then surgery may not be necessary and chemo/radiation make elimate it from your body.  If you could avoid a neck dissection with all the reconstruction, AND get rid of the cancer with chemo/radiation, you will be much better off long term.

Good Luck

Keith

 

 

Thank you

Thank you Keith and I do hope all is well with you. The test was HPV possitive. Did you have a feeding tube is this also common with this type of cancer ? Thank you again 

 

Mike

DM1

donfoo said:

Welcome Mike

Hi Mike,

Welcome to CSN. Great place with lots of good folks and lots of good info. Start reading the superthread, it hits many common topics. Ditto on the HPV+ question, which has great outcomes. Glad you joined early as you can get a lot more informed and guide your treatment plan along a path that offers you the most comfort.

Getting second opinions is often very useful, especially in cases where your primary doctors and facilities do not treat a lot of HNC. At the very minimum, you want a team approach so your case is reviewed by a range of doctors and the recommendation is coming from multiple doctors. If this is not the setup now, number one on your list is to start exploring options to get more input and review on your case.

The wait is a pain for sure, once treatment starts things move along quickly as you will likely be dealing with many common side effects.

Good luck and visit often,

Don

Thank you

Thank you again eveyone.

 

 

Mike

 

hwt

DM1 said:

Thank you

Thank you again eveyone.

 

 

Mike

 

Mike

Sorry that you had the need to find us but glad you did.  My first thought was is the reconstruction too much for your current surgeon or for all suregeons? I would lean toward a 2nd opinion so you are comfortable with your choices and treatment.  My cancer was of the jaw so allot of reconstruction (19 hour surgery). 

Prayers coming your way as you make your decision and get treatment.

Candi

ratface

slow down

Reconstruction should not be a word tossed about for someone with your stage 3 diagnosis.  A neck disection is generally the easiest of  all treatments with normally minimal need for reconstruction. Your current medical practitioner is either way off base or we are missing information.  Wait to you talk to the Oncologist, I'm guessing your plan is going to evolve from there. You must ask if a tumor board will discusses the plan. Then you wait for that recomendation. This will be your first opinion.  A second opinion is not as hard as it seems, Find a HN cancer ENT and ask for a consultation for a second opinion. The hospitals can send all the information along. You then compare plans. Not a bad idea to make copies of everything anyway. The meeting with your Oncologists should yield some direction for you. Let us know what happens?

PJ47

Take your time

and investigate your treatment options with MD's from different disciplines.  The PET will provide more information for you and the MD's to make decisions with and you will become more informed as time goes on. Many of the rest of the group have made good suggestions and you will have good support here.  Welcome Mike and we are pulling for you,

PJ

phrannie51

I'm sorry you find yourself here, Mike...

but you're lucky you found us.....this is a great place for information.

I'm kind of like the others.....a second opinion sounds to me like the way to go.  There are many people here who had cancer of the tonsils, and I'm trying to think of anyone who's surgery was a cause for reconstruction.....it's not like they have to rebuild tonsils.  I also cannot think of one person here who didn't have surgery....usually before rads/chemo (this is for tonsil cancer).  Do you live anywhere near a big cancer center?  People have had surgery in one place and had their rads and chemo closer to home....this is definately something to look into....

As for your weight....I weighed 97 lbs when I was diagnosed, so like you, didn't have any weight to lose.  I did have a feeding tube put in before I started treatment, but I never used it once during radiation.  I had cancer in a different place, so had another 3 chemo's after rads were done.....that's when the tube became my best buddy.  On the grand scale, tho....I lost a lot less weight than most of the people who had treatment at the same time I did....I only lost 16 lbs.

Waiting is the hardest part, emotionally.....and man....in this Head and Neck Cancer business there is a whole lot of hurry up and wait....I was diagnosed on March 5th....and didn't start treatment until the last week of April.....I was a wreck.  But it all turned out fine. 

Where do you live....someone here might have just the info on where you might go for a second opinion.

p 

Skiffin16

Welcome Mike...

I was similar to you in many ways..., nearly five years ago.

Right tonsil, right side lymphnode, 55 at the time, but a bit more nourished at 275# an d 6'.

Tonsils out, power port installed..., and ready to go.

Not sure on what surgery has been discussed with you.. I didn't have any other than the tonsils removed, and port installed. As for the tumor, since it was close to the carotoid, they decided to see what effects the chemo and radiation would have on it first.

The possibility were, nothing and they'd opt for removal or dissection, the tumor would shrink and removal would be less envasive, or it would completely dissolve away.

My Tx consisted of nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU.. That was day one of the first week, with the 5FU strapped on via a pump through the port, and pumped into me for the next four days. Then off for two weeks, starting the cycle again on week four, then again week seven.

After that, seven weeks of concurrent weekly Carboplatin, and 35 daily rads sessions...

I was lucky, around week seven the tumor had shrunk.., by week nine, it was completely gone, never to return.

I was also STGIII SCC Tonsils (and a lymphnode), HPV+

Since I was generously nourished, the PEG was not inserted, and for me that worked out just fine. Knowing that if things went south, it was always an option to keep calories and hydration coming in.

I dropped maybe 40# altogether..., and I swapped over to all liquid around week 3 - 4 of rads.., Ensure Plus, water and meds.., and a few scliced peaches to keep the swallower working.

With you only being 145#, you might discuss the PEG with them upfront, for their input.

Anyways, again welcome..., and hang on for the ride...

BTW, as for second opinions, they can be good... same goes for big name facilities..

But not always needed... I didn't have one, though my Cancer Center has an excellent ENT Harvard Grad, John Hopkins Intern... He also setup a team, with him as the lead, the onco, rads MD, and surgeon for the port install...

John

KB56

DM1 said:

Thank you

Thank you Keith and I do hope all is well with you. The test was HPV possitive. Did you have a feeding tube is this also common with this type of cancer ? Thank you again 

 

Mike

Feeding tube

Mike, I did have a feeding tube but you will see lots of "fors" and "against" on this site.  I lost 30 pounds with the tube and can't imagine what I would have done without it as I could take food, meds, and really important stay hydrated through it.    It really helped me when I needed it and couldn't swallow food but I was ready to get it out but if I had it to do all over again I would definitely go for the tube again.  If you get a tube make sure you are always sipping on water as you can "forget" how to swallow and that can be a big problem.

Before you start treatment go to the denist and get a good checkup and a flouride tray.  The radiation can/will play hell on your teeth due to the saliva impact (saliva is key for dental health) and i still use it every night.  so far my teeth have help up OK but my dentist scared the crap out of me (he told my wife that was his intention as he's seen it go both ways) so I brush multiple times per day, floss frequently and really watch the sweets - couldn't taste the sweets for awhile anyway:)

The fact that the cancer is HPV+ is actually great news as the long term survival rate is really positive and it typically responds well to chemo/radiation.  Avoiding a neck dissection is a really good thing.   If you get Erbitux as your chemo drug (much less toxic and damaging as some of the other drugs) it was pretty easy for me to handle after the first one.  Radiation was really tough but you will get through it and it's a means to an end with the end being cancer free.  Not trying to scare you but it is key to be mentally prepared as you start the treatments.  The first couple of weeks are not bad at all but week three it will most like start getting tougher.   Everyone handles it different so you may breeze through.

Stay in touch as you go through the battle.  Stay positive, lean on friends and family as well as the great folks on this site, and before you know it you will have all of this behind you and get back to living life and I promise you that you will no longer take the little things for granted.   We're all changed by the experience and as I've told my wife, if everyone went through a little of what we all went through the world would be a friendlier, more tolerant place.

 

Good Luck and stay in touch and let us know if you need anything!

Keith

jim and i

Welcome Mike, so sorry you

Welcome Mike, so sorry you find yourself here but praying your treatment goes well, your anxiety is lessened and the out come is NED.

Debbie

Laralyn

Have they tested for HPV?

If they haven't already tested the biopsy sample for HPV, request it. In many cases with HPV+ tonsil cancer, studies are showing that the outcome without surgery is roughly equal to the recovery with surgery. Many oncologists are opting NOT to do surgery. Simultaneous chemo and radiation can be just as effective even without surgery. I know it sounds strange, but it's true!

I had Stage IV SCC HPV+ in my left tonsil, one lymph node, and soft palate. I got two opinions--one from the regional hospital where I was treated, and one from the head of radiaology at Stanford who is a head and neck cancer specialist--and they both agreed that surgery was not required in my case.

I'm not trying to give medical advice--every case is different. I also think you should get a second opinion because you need to feel confident in your decisions. I just wanted to put your mind at ease if your doctors choose not to do surgery.

debbiejeanne

DM1 said:

Thank you

Thank you again eveyone.

 

 

Mike

 

Mike, eat everything you

Mike, eat everything you enjoy right now and eat a lot of it.  try to gain some weight now while you can eat, that way when you lose some it won't be as bad.  also, it will be extremely important for you to stay hydrated and swallow everyday.  if you don't use your swallow muscels, you will lose the ability to swallow and you don't want that to happen.  I will be praying for tx to go well and with as few side effects as possible.  let us know how you progress.

God bless,

dj

cid817

Grandmax4 said:

2nd opinion

My first question is, are you at a large cancer center? The surgery techniques have improved vastly in the last couple years. I had a full radical dissection, done by my surgeon, using the de vinci robot. My surgery was removal of a cancerous mass and my epiglottis, plus nodes. I was blessed that the nodes had not been invaded and did not have to have chemo or radiation.

For your peace of mind, I would get a second opinion~~ you did not say where you are located, but many states have large,modern hospitals 

Grandmax4

Can I ask where you are located?  My hubby was diagnosed with tumor on the epiglottis with 2 nodes affected.  ENT told him they may do surgery, depending what the PET scan shows.  He's about 9 weeks out of treatment, PET is scheduled for Feb 17.

Thanks