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New to site feeling helpless

Auntashell6933's picture
Auntashell6933
Posts: 2
Joined: Nov 2013

Hi everyone,

I am new to the site. Feeling a little lost and helpless. Here's my story.

About a month ago my husband, who is 51, non smoker and non drinker, went to our PC Dr. with swollen lymph nodes in the left side of his neck. He was put on antibiotics for two weeks. After no change in two weeks our PC Dr. scheduled a biopsy of the lymph nodes. The biopsy came back indicating cancer. From there we went to an ENT, he gave us the results of the biopsy as cancer in the lymph nodes with a HPV marker. After an exam he believes the cancer originated in the left tonsil. We are now set up for a PET Scan and CT Scan Tuesday.

Here is my question, we did not pick this doctor, we do like him and have heard positive things about the group he is with. How do you know if you have the right doctor? We don't know what stage cancer it is yet but I keep reading about Robotic Surgery and I mentioned it to the ENT he said they would not use robotic surgery that they would cut it out manually and follow up with 35 treatments of radiation, based on what we know right now. I'm sure we will know more after the PET Scan and CT Scan Tuesday. My husband is so anxious to get it out, he just wants it out. I want it gone but the way that will offer us the best survival rate.

Any suggestions or advice would be very much appreciated. I am just a ball of mixed emotions right now.

 
Thanks so much,

Auntashell

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

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

debbiejeanne's picture
debbiejeanne
Posts: 2280
Joined: Jan 2010

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

donfoo's picture
donfoo
Posts: 1164
Joined: Dec 2012

Hi,

Sorry you had to hunt down this little club on the Internet but we all understand what you are going through now. The timing of your case is good in that you can fit in a second opinion from another cancer center. It certainly does not hurt and would ease your mind that the road you choose is the best one and your confidence may increase too. Most insurance plans seem to pay for second opinions. If you go that route, you will want to promptly start collecting all the notes, reports, tests and such so that can be bundled up and sent along.

 

The most well respected facilities are known as CCC or comprehensive cancer centers. They operate on a team basis so you get many perspectives rather than just one doctor. 

Good luck, Don

CivilMatt's picture
CivilMatt
Posts: 2863
Joined: May 2012

Auntashell,

Welcome to the H&N forum, sorry you find yourself here.  I also sported the left neck swollen lymph node, but my cancer was located at the base of my tongue and I had both cancer locations surgically removed prior to radiation and Erbitux.

I went to a local ENT and local oncologists, with very good luck.  You already have points in your favor, you like them and you heard good things.  Also, they sound like they are on the ball with diagnosing him quickly.

Whatever path you chose (doctors) the treatment will be similar and will take you places you only thought about.   The side effects of treatment are no joy ride, but with the right combinations of meds and behavior, it is completely survivable.

Try to relax and get use to your temporary “new life”.  There does not seem to be a rhyme or reason to why, it just is.

Good luck and welcome aboard,

Matt

Duggie88's picture
Duggie88
Posts: 526
Joined: Feb 2010

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

sin9775's picture
sin9775
Posts: 191
Joined: May 2013

Hi Auntashell,

My brother is 54 and has just recently finished up his treatment.  He did not have surgery prior to treatment like a lot of people here have.  His doctor told him that he believes that treatment should be done first, because so often the rads zap the tumor to oblivion, so why go through surgery if radiation will take care of it?  If the rads don't completely eradicate the tumor, then at least the tumor will be much, much smaller to deal with.  Thankfully, rads/chemo worked for my brother.  His first scan post treatment came back negative.  The tumor is gone.  I think a second opinion is a very good idea.  Good luck on this journey you and your husband are about to undertake. 

Bring all of your questions and concerns to this site.  The people on here are always willing to listen, advise, uplift, and pray.  God bless.

~Shawn~

kevinr51's picture
kevinr51
Posts: 14
Joined: Nov 2013

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

robswife87's picture
robswife87
Posts: 175
Joined: Mar 2013

U of M Ann Arbor. Stage 4 Tonsil dpread to lymph nodes. At least 4. Spot on back of throat. SCC HPV+

no surgery. 35 rads, 7 chemo (Taxol and Carbo). Feeding tube 2.5 weeks in. Thrush the whole time. 

1st PET scan all clean. 

It will be tough but you will win.

Sandy

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Auntashell, this is wonderful bunch of people on this site, you have already heard from a few of them that have welcomed me, educated me and bolstered me up. I was diagnosed Oct 18 with a biopsy, one tonsil, 2 lymph nodes on the left side, all regional according to the PET, as Matt and others will tell you, you will get plan and start moving forward literally one day at a time.  Since the 18th I have seen a H and N, and we really like his approach, got a plan, had salivary gland movement on the good side to save it, a medi port put in for the chemom fluorine trays, and just yesterday a PEG tube inserted.  I have been reading the posts and information on this site since that tme and received wonderful help.  As Don said there are team approaches that are terrific and they will be there for you.

I start treatments on the 25th, 7 weeks of radiaiton and concurrent chemo, the reality is I will not know until I go through it. but I have started to prepare with responses from those wonderful people here, it has really helped.  Positve attitude, resolved to make it through one day at a time, faith. and leaning on those you need to lean on. 

I will be posting throughout so feel free to contact me, there is an email part here as well, but as I have learned in this short time again is that all are here to help and lean on.  This has changed my life for sure and I thanks all those supporters here, they can help you too.

God Bless

Steve

Sunshine60
Posts: 74
Joined: Apr 2013

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's picture
Grandmax4
Posts: 578
Joined: Dec 2011

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

 

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

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 

phrannie51's picture
phrannie51
Posts: 3627
Joined: Mar 2012

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.

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

So sorry to hear about your husband but happy you found this group. My husband had stage 4 base of tongue with 2 lumph nodes. I would have not gotten this far without this group. Don't feel any question is silly because they are not. I never asked a question without someone offering help, insight and/or prayer. Praying for you both to be strong during this trying orseal and that you meet NED when treatment is over.

Debbie

Mikemetz's picture
Mikemetz
Posts: 334
Joined: Nov 2011

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

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

My husband just (as in 11/20/13) finished treatment. His diagnosis was very similar to your husbands. As far as how you know if the Dr. is the right one for you, I would say go with your instinctual, gut feeling. There is so much information out there, that in my opinion, the most important thing is to have a Dr./team that you are comfortable talking to and running questions by. If you feel like there is no question 'off limits', that would be a team that in my opinion would serve you both well.

Best of luck, and remember, there are a lot of people here pulling for you both!

Jamie

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