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

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

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.

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.

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

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.  

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

Bill

Best of luck for your surgery.