HELP!!!
My son (27) is being examined for Oral cancer within the next 2 or 3 days. Possible stage 1/2 adjacent to tonsil.
I've read as much as I can of treatment and statistics on web (very depressing). I am consumed with fear and hope I can support him through this experience mentally and with sound medical decisions.
He seems to be taking this better than his mother and I. I'm encougaged by all your messages of survival and optimism.
I welcome any advise you can offer as we begin this ordeal, questions to ask, best current treatment options, recommend websites.

odaat

I moved your thread to it's own topic so it wouldn't get buried in Rosiepants thread. Welcome to the forum.

Odaat,
once again welcome to the forum. We have had many discussions on statistics and they don't tell the whole story. They don't take into consideration health habits, age, or other major factors. Even though I was advanced stage, where the so called statistics are considerably worse, my RO gave me an 85% chance of 5 year survival (5 years being a benchmark). Your son is very fortunate that it was caught early and it's still only just a "possibility" since they have not completed the full workup. The "gold standard" is the pathology report from a biopsy. Early detection is key to sucessful treatment of this and all forms of cancer.

Until then there is not much we can tell you except the common saying around here is "it isn't cancer until the pathology report says it is". Take a deep breath, go with your son and take very detailed notes. Try to stay unemotional and focused. You will need these notes later in case he have to make decisions about different treatment options IF it comes to that. He should definitely have someone taking notes no matter who it is (like if he is married for instance).

Is he being seen by a ENT or head & neck surgeon? How was it detected?

We also like to recommend that he goes to a comprehensive cancer center before treatment is started for at least a second opinion and preferably treatment as well if applicable.

Hi Odaat

So sorry to hear of your situation, I think it is actually worse for the family than it is for the patient. I know when I was diagnosed, my husband and family were completely sideswiped. Personally I never felt that my life was threatened (rightly or wrongly I'm not sure) but I think as soon as people hear the word 'cancer' they immediately think death. But it really isn't.

I found that as the patient I needed to talk about it all the time and whist I was telling others that my prognosis was really good I started to believe it.

Your son may be different and it may yet not turn out to be that serious, but if he does get that diagnosis the take comfort from the fact that early detection is the best scenario and oral cancers are very treatable and respond well.

I wish you strength to deal with whatever you have to.

With best regards

Rosie

Rosie and Gary,
Thanks so much for your reply and encouragement.

He is seeing a head and neck surgeon at Eye and Ear for diagnosis/screening. His specialty is oral and throat cancer. Treatment is at Hillman Cancer Center. (UPMC University of Pittsburgh Medical Center). It's my understanding they rank in top 20 hospital centers in USA. Do you still think 2nd opinion necessary? I kinda bypassed some steps for the sake of saving as much time as possible.

Pardon my ignorance. What is an ENT? Which is preferred?

Detected by primary care MD when he complained of sore throat.

Got a question of insurance. His insurance lapse when became unemployed. Applied for MEDICAID but "Catch 22" govt regs didn't qualify him. I'm looking into insurance with pre-existing conditions. Any thoughts.

I respect your knwoledge, experiences (regretfully anyone should go through such an ordeal), and that you took the time to offer both to me and my family is quite remarkable and truly appreciated. May you both enjoy continued health.

Sincerely,
odaat

Head & neck surgeon is just fine - probably even a little bit better qualified then an ENT (Ear, Nose & Throat) specialist.

I can't help you with the rules for Medicaid. My wife and I have our own private small group through Kaiser since we are both self employed. We're both over 50 and it's not cheap, almost $1200/mo. It does include eye care and dental with a $5.00 copay for doctors and $10.00 for generic drugs ($15.00 for name brand). Hospitalization and treatment, like chemo and radiation are free. Scans are $50.00, lab work and chest x-ray $10.00. It also includes mental health. Some people swear at Kaiser and some swear by them. They have made big improvements over the last 10 years. although they recently got some bad press for the kidney transplant program. My wife and I are generally satisfied with the standards of care and they seem to be particularly good with major and chronic health issues. They faifhfully follow the current NCCN Oncology Practice Guidelines. They are currently breaking ground for a number of dedicated cancer centers around the US. I have seen the same doctors there for almost 4 years now. They have a "no medical questions asked" policy for small group plans, but you must meet strict eligibility requirements and they are not in every state. I should also add that they paid 100% of the fees for my treatment at a comprehensive cancer center and I got to choose whether I wanted to go to Stanford or UCSF.

The other alternative would be through the public health care system. Some of them are quite good and are resdiency sites for doctors out of medical school at from the major CCC's. I have a friend who had advanced stage small oat cell lung cancer that had metastesized into the esophogus and she got state of the art chemo cocktails and three different radiation treatments, lung, esosphogus and brain and is a 3 1/2 year survivor. Small oat cell has like a 5% 5 year survival rate. It's one of the worst. You have to be a pauper and not own anything, especially real estate. I believe there is a 2K limit on the value of the car, otherwise the state will attach it.

Is there still time left to COBRA his original insurance? It can get very expensive, particularly if he has assets, some here have mentioned 6 figure copays.

It goes without saying that we would always recommend a CCC wherever possible.

Dear Odaat, have you talked to an Ins. provider that knows if the state of Penn. provides any kind of options? Arkansas has an Ins. program called CHIPS-[compreshesive Health Ins] It is administered by Blue Cross and is for people who have lost coverage elsewhere. It is a Godsend to us. I would not have known about it, except for a sharp Ins. Agent. Call your State Ins Commission or get on the net and search for the State Ins. Commission. [pre-existing conditions did not disqualify him] It may take lots of leg work, but you might find something good. Good Luck. Amy

Odaat,
My dad was treated through the UPMC system in Pittsburgh nine years ago and it is one of the best in the country. I spent many hours in the cancer center information center/library there.

I would think their social workers would be versed in some of the insurance issues, or could refer you to someone who is. Also, a great resource could be the benefits administrator in the human resources department at your employer or at your son's former employer. They know all the COBRA rules (in case your son is still eligible for that) and they often are aware of alternative insurance resources for these kinds of circumstances. Good luck and let us know how things go.

Joyce (Pittsburgh native and Steeler fan)