Just diagnosed with OSCC, 30 yr old, looking for advice on care

JCH1985

received tongue biopsy results Thursday that I have squamous cell carcinoma of the tongue.  Had a CT scan which showed that it has not spread to lymph nodes.  My best estimate is the spot on my tongue is 2 CM and about half way back on the riget side.  So just self diagnosing I would say I'm a Stage 1 or at worst Stage 2.  I'm still terrified.  30 year old male and I have never smoked or drank alcohol.  I'm married with five kids and my wife is the only sexual partner I have ever had.  I'm not sure if the diagnosis was linked to HPV16 or not (but intend to find out).

My ENT was the one that did the biopsy and read the CT scan.  He has referred me to a specialist that I will see on Tuesday.  Been up every night reading as much as I can (many of your comments and threads have been helpful but also pretty scary).  Tuesday feels like it's years away and waiting to get more information is agonizing as you all know.  Any insight on the questions below is much appreciated.

What recommendations do you have for assembling a team of doctors?  Should I be seeing an oncologist or an ENT or both?  

If the CT scan didnt show anything in the lymph nodes, is it still likely I will have the neck dissection and removal?

Is there ever a case when just doing the surgery is the right answer?  Or is radiation therapy always done in combination with the resection?

Anyone in Utah gone through this with a doctor / set of doctors that they recommend?

wmc

Welcome to the H&N Group

Welcome to the group, and sorry you need to be here. Yes it is scary. You have very good questions. The answers are what is hard as the doctors form a treatment just for you. Some surgery is done and most often chemo and radiation so they don't have to remove any of the tongue, but it all depends what they see. As far as a neck dissection that to can depend if they feel it is in your best intrest. Mine was a tumor in the larynx just above my vocal cords. I was a smoker for many years and my lungs were bad so I hah very little choise as what could be done. They did a neck dissection on both sides as a precaution if it ever came back it would not go to lymph glands and spread.

I recomend everyone goes to a major hospital or cancer place. Do not go local unless it is a major place. When you select a place you want to go you will concider your wife but the rest of the family can help with the children. Don't choose for friends just so they can see you. You are fighting for your life, and you go where it is best for you and easy on your wife and family. If you have to travel most can make arrangements for your wife to stay at no cost or a least very redused.

Here is a list of national ranked hospitals. What I did was found who was good ENT and also cancer. Your doctor [ENT] will send you to a specialest but if it is just another local, try to be seen by a tumor board. That is where you are seen by all the doctors at once. Surgeon,ENT, Radiologist, Onc Radiologist, and even nutritionist.

http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat This is set for ENT but you can select cancer as well. Where you go dose matter. I know everyone is different, but I had very little problems and with a double neck dissection I have no problems and many can't lift there arm over there shoulder. Some will say having chemo local won't matter, but it can. I was sent to the best ONC in my town and he told me "You do not have cancer" and 9 months later I had surgery to remove the cancer and it had to be growing more than a year. One lady was being treated local with radiation and they burned her so bad they had to transfer her to Stanford medical to save her. My local doctors are rated very good and so is the Hospital. But I won't have them treat me. I am in California and had my choise of just about anywhere. For me I made the right dission and I went to Stanford. My lungs were really bad so the only way anyone would do mine was to remove my larynx and I breath through my neck. It was going to be 8 to 15 hour surgery, and I could not survive radiation because of my lungs. When it was done I did not need chemo or radiation so I really had it easier than most. Sure I lost my voice but I still can talk, and been cancer free two years and doing very well. You will have questions for your doctor so write them down and leave room for answers. Take someone with you as well. Hand the questions to the doctor and he should go over them all. If not, you have the wrong doctor. Mine wrote the answers down and handed them back after he explained everything.

You're in for a rough journey, but you will get through it. Many on this board had BOT and will help all that they can. Just keep your wife knowing how you feel and she needs to tell you as well. It is rough on both of you as she is scsrred as well. Will add you both to my prayer list. Just take one day at a time, and only today matters. You are not alone in this. were open 24/7

Bill

CivilMatt

welcome

JCH1985,

Welcome to the H&N forum, I feel your pain as I was in the same place, 4 years ago next month.  I had stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  So far all’s good.

There is no doubt you want a  “top notch” team (ent, rad onc, chemo onc, etc…).  I went local in the middle of Oregon and had an excellent  team with a proven track record and the latest technology.

I had 1 swollen lymph node which required a jugular vein dissection which was removed at the same time as my tongue surgery.  Each hurt a little, but required no pain meds.  It was more a discomfort.

My PET/CT help  them determine the limits of my treatment.

Yes, for some surgery is the correct treatment.  You will be asked to make decisions on your treatment.  So listen carefully to your choices.  Your selection will fall somewhere in between “scorched earth” and “ nothing”.  Your team will guide you in the correct direction.

There your first post was pleasant enough.

Again, welcome and good luck.

Matt

MrsBD

Welcome

Welcome, JCH. Cancer is definitely a waiting game. We wait for tests, wait for a diagnosis, a treatment plan, the start of treatment,  the END of treatment, and then the long wait to hear that we are NED. I finished treatment one year ago tomorrow and am doing great. Mine was SCC, BOT, Stage IVa with spread to a lymph node on each side.  Like you, I never smoked or drank and have been married to my one and only for 41 years. HPV tumors are said to have a better prognosis , however being a non-smoker bumps up the success rate quite a bit. My oncologist said the chances of beating this was greater than 90%.

You may not need to assemble your own team. At our mid-size hospital, I see three doctors- an ENT and oncologists who specialize in radiology and chemo. They work with a social worker, nutritionist, and a speech and swallowing therapist. Every week they meet to discuss their patients.

My treatment did not include any surgery other than a biopsy of one lymph node. Because of the stage and location, they did radiation and infusions of Erbitux,  a monoclonal antibody. Treatment is very individualized and some have just surgery, others have none. You have options. Whatever you read on the Web, be sure it is up to date and from a major site like the American Cancer Society or the Oral Cancer Foundation. 

Please let us know what you learn on Tuesday so we can be there for you with advice and support.

kdot2003

Hi

Hi, 

I wish I could help.  I just want to say I am in basically the same boat.  I like your boat better though.  I have SCC mets to lymph node unknown primary so far, waiting for my appointments and treatment options.  I received my diagnosis one week ago and my next appt is in four days.  I am terrified.  Its all I can think about.  I am not having any brave moments.  Sometimes I wonder if I can make it through....whatever.  You are not alone.  This seems like an awesome group.   HUGG. 

JCH1985

Thanks for everyone's insight

Appreciate everyone taking time to answer my questions and for sharing your experiences.  I'll post again after I get more detailed information on Tuesday night.

 

KDOT2003...sorry to hear that you sound as troubled as I have been during these first few days of knowing you have OSCC.  Navigating all the ambiguity and unknowns feels like the scariest part and so hopefully we can both start getting some clarity and an action plan soon.  It sounds like we have some potentially painful / uncomfortable days ahead through the treatment process, but I'm really encouraged because it feels like the most important thing --- being able to live a happy, productive life --- is still in the cards for us.

jakesaround

There is hope...

Hello JCH,

From the little bit that you described in your post I would say there is hope that all you may require is surgery. The situation where that is possible is if your cancer is diagnosed as "squamous cell carcinoma in Situ" which basically means the cancer is just in its begining stages and it is merly growing on the surface of your tongue, and that it's not actually a tumor that's growing inside of your tongue. Did your doc say anything about this, did he mention if it was a tumor inside your tongue or is it just a growth on the outside surface? I actually have a friend right now that's going through this SCC in Situ of the tongue and he got 2 opinions and they both only reccomended surgical removal with no further treatment. Now don't get me wrong the surgery in and of itself will be painful and a difficult road to recovery but you will make it and be very much as you are now once your tongue heals itself.

Also if it's not in your lymph nodes I would not see any reason why you would need a neck dissection. Neck dissections are really only used to remove cancerous nodes and tumors only. (having said that I do want to clarify that if a neck dissection is done due to cancerous nodes they will remove surrounding nodes which may be healthy just to check them and also to remove any microscopic cancer cells that may have spread up or down the lymph system from the cancerous nodes.)

Either way if you need surgery, chemo, and rads or just surgery you should know that you can beat this and be around for your wife and kids for a long time.

ttyl.

jake...

wmc

JCH1985 said:

Thanks for everyone's insight

Appreciate everyone taking time to answer my questions and for sharing your experiences.  I'll post again after I get more detailed information on Tuesday night.

 

KDOT2003...sorry to hear that you sound as troubled as I have been during these first few days of knowing you have OSCC.  Navigating all the ambiguity and unknowns feels like the scariest part and so hopefully we can both start getting some clarity and an action plan soon.  It sounds like we have some potentially painful / uncomfortable days ahead through the treatment process, but I'm really encouraged because it feels like the most important thing --- being able to live a happy, productive life --- is still in the cards for us.

To KDOT and JCH remember.............

Yes it is a bumpy road, but you are what can make the bigest difference of your recovery. After my surgery the doctors said I had to walk and do 3 laps around the wing I was in. I did 5 laps. 

You have to give it 110% and get the attitude you can beat anything that comes your way. Keep swallowing or sipping water and stay hydrate. The best doctors can do what they do, but the rest is up to you, and it does really matter that you believe. For me I knew I would be ok, but there was only five that thought I would make it and that is counting the doctor, my self, my wife, and two friends at work. My brother son and father in law and 248 at work thought I would not make it. I knew I would and be back at work 10 weeks ahter surgery, and I was. I had to learn how to swallow, eat and speak all over again. I went back for my first follow up and my doctor told me on a scale from 1 ~ 10, I was a 14. The process can be slow, but you can and will beat this if you do your best. Never give up and allways believe in yourself. A big part of my job was talking to my crew and on the phone and to the truck drivers, and they removed my vioce box. They put in a TEP Prosthesis that I divert air through [6.5mm] and that lets me talk with my voice. Just believe.......

Bill

avisemi

JCH,
I hope you appointment

JCH,

I hope you appointment went well and that the doctors explained everything clearly to you. You can do this! The road is not easy but many here have walked through it and have given lots of great advice on how to walked it. Good luck!

 

JCH1985

avisemi said:

JCH,
I hope you appointment

JCH,

I hope you appointment went well and that the doctors explained everything clearly to you. You can do this! The road is not easy but many here have walked through it and have given lots of great advice on how to walked it. Good luck!

 

Update

just wanted to thank everyone again for their insights.  This past week I met with twi different head and neck oncologists who both diagnosed me as T1 N0 M0 ---- so we caught this as about as early as you can.  I go in for surgery on Monday to remover the tumor in the tongue and Take out lymph nodes as a precautionary measure.  As long as the pathology reports come back clean on the nodes I won't have to do radiation therapy.  So while I'm not out of the woods yet, I feel SO fortunate compared to what this might have entailed.  

Good is luck to all of you on your road to continued healing.  

Barbaraek

JCH1985 said:

Update

just wanted to thank everyone again for their insights.  This past week I met with twi different head and neck oncologists who both diagnosed me as T1 N0 M0 ---- so we caught this as about as early as you can.  I go in for surgery on Monday to remover the tumor in the tongue and Take out lymph nodes as a precautionary measure.  As long as the pathology reports come back clean on the nodes I won't have to do radiation therapy.  So while I'm not out of the woods yet, I feel SO fortunate compared to what this might have entailed.  

Good is luck to all of you on your road to continued healing.  

That is fantastic news!

Glad you caught it early! If you don't require radiation that is a big blessing. Keep us updated and all the best to you and your family.

Barbara

wmc

JCH1985 said:

Update

just wanted to thank everyone again for their insights.  This past week I met with twi different head and neck oncologists who both diagnosed me as T1 N0 M0 ---- so we caught this as about as early as you can.  I go in for surgery on Monday to remover the tumor in the tongue and Take out lymph nodes as a precautionary measure.  As long as the pathology reports come back clean on the nodes I won't have to do radiation therapy.  So while I'm not out of the woods yet, I feel SO fortunate compared to what this might have entailed.  

Good is luck to all of you on your road to continued healing.  

Yes T1 is very good news

T1; N0; M0; is great news and yes it was caught very early, most likely only Stage I

Bill

MrsBD

Wonderful news!
You really

Wonderful news!

You really did catch it early. I hope your treatment will be simple and your recovery quick.

prashantkrai

Best of luck

Best of luck for your surgery.

kdot2003

JCH1985 said:

Update

just wanted to thank everyone again for their insights.  This past week I met with twi different head and neck oncologists who both diagnosed me as T1 N0 M0 ---- so we caught this as about as early as you can.  I go in for surgery on Monday to remover the tumor in the tongue and Take out lymph nodes as a precautionary measure.  As long as the pathology reports come back clean on the nodes I won't have to do radiation therapy.  So while I'm not out of the woods yet, I feel SO fortunate compared to what this might have entailed.  

Good is luck to all of you on your road to continued healing.  

That IS AWESOME!!!!

That IS AWESOME!!!!