Hi all,
I'm not sure who knows or who doesnt but i got miss diagnosed for a couple of years i was told the sore in my mouth was a canker sore and "nothing to worry about" so imagine my surprise when after a biopsy it was stage 4 SCC..well the reason i'm telling you this is while i was telling my inlaws about it all my father in law butted in and described my symptoms!!!!! when i asked how he knew he said he had had a sore in his mouth (left side tongue) that would come and go for a couple of years and he had been told the same thing only thing is like me everytime his came back it was bigger and more sore.
so i told them both to make sure he went to see my ENT next time it came back...

well it came back so he went to see his Dr the other day his Dr refused to refer him saying the same old same old its just a canker sore this time maybe with a virus?!!!!!, now he is having trouble with a persistent cough 2 months now, im so worried its all related and have no idea what to do, apprently meicare wont let him see a specialist without a referal....ok im done venting when will the medical profession stop doing this.

anyone heard of this type of thing that has really been "nothing to worry about"?

thanks for reading...hope this is in the right place..Debz

Debz- My husband was told for a year by three different doctors that the sore on the floor of his mouth was a virus, cold sore, even a blocked salivary gland. By the time we got him to an oral surgeon it was stage 4 SCC. It had spread to his lymph nodes and now it has metastasised into his right lung. He is only 47. The oral surgeon took one look at it and knew what it was before he even took the biopsy. It just so happens he is a pathology professor at Columbia University Hospital. It is so sad that these other docors don't refer people to a specialist right away. This could have been caught so much sooner. The original dentist has been a family friend for 20 years! I fear for the rest of his patients. Sue

auntypebbles,
Unfortunatly I hear about these type of situations all to often and it sickens me. People are misdiagnosed every day. I was one of them ten years ago. I know what you are going through and I don't like when others have to go through it.
Soooo... The following is what I would do.
The first thing I have to say is that he needs a new doctor now.
Secondly, whether medicare covers it or not, he needs to have a biopsy.
Recurrent ulcers in the same spot, painless or not, need to be investigated. Mouth ulcers that are innocent disappear and completely heal in 10-14 days. They can be very painful and cause lymphnodes to enlarge but everything returns to normal when they heal. They also do not usually continue to appear in the same place unless there is and associated irritation.
In my opinion, he needs to immediatly see an ENT or Oral surgeon. Find a doctor or for that matter a dentist who will refer him.
Good luck.
My thoughts and prayers are with you both.
Cheers,
Mike

thank you both very much appreciate you taking time to reply,

Aww Sue im so sorry you have both had to go through this its a very similar story to mine although so far mine hadnt spread.sending prayers your way for a full recovery.

i thought as much that it wasnt normal for a sore to keep appearing, still holding out hope it really is nothing but i know he needs to be seen (and soon) i will call my MIL in the am and work it out with her, we will find a way to pay ourselves.

My ent is an oral surgeon i read somewhere that not all ent's are created equal and you get better diagnosis from an oral surgeon because they see more or something along those lines, she is very thorough with me.

thank you again..Debz

auntypebbles,
ENT and/or Oral Surgeon, it really doesn't matter if they have experience in dealing with OC. It is however, better if either one is working as a part of a team at a Comprehsive Cancer Center (CCC). A member of a CCC team usually is involved in tumor boards(staging of cancer and treatment planning for newly diagnosed patients), has access to the latest clinical and scientific information, can arrange for immediate consultations with other specialists and can prioritize the urgence of treatment of a patient in order to expedite their treatment over another less urgent patient. I don't want anyone to think that I don't think that any diagnosis of cancer is less important than another but, some have a more urgent necessity for treatment depending on stage etc. to be treated in order that the patient has the best chance for success.
Cheers,
Mike

Dr Mike thank you again for your time,

I think thats why i like my Team who treated me, for me it was 10 days from being diagnosed to starting my treatment, that included setting me up with my Onc dr having my peg fitted dental cleanings having my mask fitted ect, well you know the drill but they where amzing and very speedy one phone call got me a same day appointment with who ever i needed to see.

I am about to call my MIL see what we can do...appreciate your time..Debz

Debz,
I happened to be on the phone to a nurse who was scheduling a procedure for my husband whose primary is Medicare and asked if he didn't need a referal. She said that NO referals are needed for a specialist if you are on the normal medicare. Only if you have Aetna or Cigna medicare. So what does he have? If regular Medicare, make cerain facility or doctor takes it. Then ask if referral needed. I don't think it is.

Take care,
Eileen

OOO Eileen thank you so much for asking...big hug to you. I'm still learning about the USA health care system so i will have to ask, well they are both retired i know they have medicare and medicade?...i think thats how you spell them but i will have to check they arent answering the phone they had better be at the dr's ...

I called earlier today to be told by my MIL it was on the back burner for now and my FIL was chopping wood?!!!!! what!!!! so of course i had to scare them a little to make them take this seriously you would think after all they went through with me it would be without question wouldnt you (they came to my home everyday i was going through treatment)My hubby is at work but he said if they havent gone by tomorrow hes going over to see them (that should do it)..LOL.

Thank you again Eileen as always your amazing...Debz

Debz,
That was standard US Medicare. I don't know anything about Medicaid. Maybe someone else can answer that one.

Take care,
Eileen