Any Info will help

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 

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!

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

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?

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 

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

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

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.

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 

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