New to site feeling helpless

auntashell, i'm sorry u needed to find this site but very glad u did.  this is a wonderful place to get information from people who have traveled the road your hubby is about to travel.  come here often and ask all your questions.  you will get replies from people who have been thru it or are going thru it now.  As skiffin said, it is a rough road but yoget thru it and u will see the lite at the end of the tunnel about 3/4 way thru tx.  hang in there and pls keep us posted on your hubby's progress.

God bless you,

dj

It will be 4 years this coming Friday that I was told I had cancer at the base of my tongue and a few lymph nodes on the left side. I was sent to the Hospital of the University of Pennsylvania for surgery less than a month later. Actrually the same day the FDA approved my surgeon's robotic surgery but he said I wasn't a good candidate for it because it also affected my epiglotis which was also removed. I like your husband just wanted it gone and didn't care what kind of hell I had to go through which also included 30 radiation treatments. Like John said it wasn't a stroll in the park but very doable. The advantage you have over me is I never got involved with this great website until after my treatment. We can help you and your husband with the good, the bad, and the ugly and even more so the celebration after he rids himself of cancer. Take a deep breath, tighten your shoe laces and we can all walk the path with you. Maybe mention your location and the hospital so others can chime in who possibly visited the same location. There are many great people on here that can render support for both you as the caregiver and your husband the warrior.

Hang in there, if I can do it anybody can.

      Jeff

Actually your story is like many here, myself included....

So with that being said, all that you have went through so far is actually pretty standard. If indeed it is similar to myself, STGIII SCC Tonsil Cancer (right), and a lymphnode, also HPV derived. His treatment you mention is somewhat standard.

If he has a lymphnode, and tonsils are affected on the same side, more than likely it'll be STGIII..., if only one area, possibly STGI or II..., and if it's on opposite sides, more than likely STGIV.

But...., other than STGI, more than likely the treatment will be pretty much the same, either surgery, radiation, or chemo..., or any combination of all three...

Also, HPV derived tends to respond pretty well to treatment, but in all reality..., it's rough and pretty much sucks. The good thing is that the survival rates are very good, and more than likely he's going to come out with great results.

Again, it's rough, very rough..., but doable.

You're going to hear this more than you want, but we are all different, you never know how you are going to respond until you're knee deep in it...

I guess as for you MD's, find out their experience with treating others similar to your hubby...

A lot of people here highly endorse going to big institutions, well know facility.. But my facility is fairly small, comparatively..., though my main MD, my ENT did go to Harvard, and interned at John Hopkins..., and I was treated perfectly.

It's who you trust and have confidense in, along with a proven history that will get you through.

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

BTW, I had a regime of tonsils removed, nine weeks (three week cycles) of Cisplatin, Taxotere, and 5FU infused through a power port surgically implanted into my chest... Then an additional seven weeks of concurrent Carboplatin (weekly), and 35 daily rads...

All of that was in 2009, all clean and clear since..., nearly five years later.

Best,

John

I am 51 and i too was diagnosed scc in tonsil and 2 nodes original ENT wanted to do radical dissection i sought a second opinion at a large hospital (Uof M in michigan) like sins brother they thought it would be best to do the chemo/radiation and then decide wether any surgery was necessary i am glad i sought the second opinion the radical would have had to remove way too much

Kevin

I was also the caretaker of my husband- SCC stage lll, left side of the neck,  1 lymph node , ( very big, 4.3 cm) unknown primary. My husband also had his tonsils removed in a second surgery but all was negative.  He completed 33 rads, no chemo.  He finished tx in June 2013, just had his first CAT scan which was negative.  Lots of worry I know, as all of us here know.  Although none of us want to be here, and even though tx is not easy, you will hear over an over again that it is doable.   And i promise it is.  Day at a time- and when you have questions or concerns, or are just plain scared- come here.   I couldn't have come through as easily without this site.  Keep us informed - we're here for you and your husband. 

Grandmax4 said:

I'm a 2 year

survivor of cancer on my epiglottis. I had the de vinci robotic surgery, was very blessed the cancer had not spread to lymph nodes, so no chemo or radiation was needed. The ENT in my small hometown did not feel comfortable treating my cancer, but, sent me to a surgeon at The James Cancer Center in our state capitol, Columbus. I fell in love with my surgeon our first visit and trust him with my whole being. If you like the Doctor you were sent to, do research, ask him, how many of these surgeries has he done,etc.

   The treatment for head and neck, I'm not going to lie, is brutal..the recovery takes time...I had to learn to swallow a new way and do exercises, faithfully, to get my voice back.

     I was told by my Doctor, the robotic surgery is faster ( mine was, 10 hour surgery), heals quicker, and is less painful..but, since that's all I know, I have no way to compare.

     Bless you and your husband as you begin this journey, please keep us posted

 

We were all very anxious at the stage of the game where you & your husband are. If you think robotic surgery is a possibility and you want to explore that option, I definitely encourage you to get another opinion. No need to go into this second guessing anything.

Candi 

right now, at least emotionally.  It's a scary thing having to make so many BIG decisions at one time.  Second opinions are a good thing, with any life and death type illnesses.....you didn't say where you are, so I don't know if you're in a big cancer center or in a local center. 

I vasillated for a couple of weeks between staying here and going to MD Anderson in Houston (I'm in Montana).....when I found out from my Oncologist that my treatment was going to be the same.....same chemo's, same radiation machine, same duration.....I opted to stay here....but I was really nervous about it at first.

You can send your records to a hospital with a DaVinci robotic surgery machine.....and find out if they'd recommend it for tonsil surgery.....somewhere in my mind I have it that robotic surgery is for places that are hard to get into and manuver around....but it's worth knowing.

Your hubby is going to be alright.....like I said, this first part before treatment gets started really is the worst.....did anybody tell  you to not go poking around the internet to learn more?  Don't do it...the info is outdated....and it's cold and scary out there....stick with us, and we'll help you help your man get through this tunnel and out the other side.

p 

Many of the "veterans" on this site have already responded with great advice, so I won't add to that.  I will add that you and your husband need to recognize that in the short term cancer is not your real enemy.  The effectiveness of treatments has come a long way and the survival rate goes up every year.  What has changed little is that the treatments are brutal on the body and mind, and are the biggest enemies in the short run.  So, don't focus on his cancer right now--that is what it is.  Instead, focus on the treatments and how to prepare for and survive them.  To help you with that, you can lean on many of us here who have survived as patients or caregivers.

You and your husband can get through this, but it will not be easy.

Mike