oral cancer terminal? - Cancer: Oral Message Board

Mybrother · 09-11-2003, 01:27 AM

Last December my brother had a sore in his mouth that would not heal. Went to the family Dr. He said its nothing, try this mouth wash. Two weeks later, sore has grown and very painful. Goes to dentist, says its nothing but maybe infected and tooth problem. Fixes tooth and gives antibiotics. Still growing and now more sores, goes to ear,nose,throat Dr. Takes biopsy but says its not cancer. Two mouths later and another biospy says its cancer(no one even called to tell results where in. We had to call several times!) Two months later they remove part of his tongue and laser spots off. Say looks good. Quote "very do-able recovery", said stage II/III and caught in time. A board of specialist looked over his case and said great but lets do 6 weeks radiation as follow-up in case anything was missed. Radiation was hell. He had major side effects. Had to have a feeding tube put in third week of treatment. First couple of weeks the pains med.s would put him to sleep. But be the third, he wasn't sleeping more than an hour and in constent pain. Along with major choking on the fleme and mocus. They put him on more pain med.s and stuff to claim him. He was so upset by the treatments.(He has learning disabilities and understands at about a ten year old level.) Finally make it through the treatment with double doses at the end. Dr. says he should start feeling better in about a month. Well, here we are and it has been all dowm hill. Nothing was helping him. Radiation Dr. says he'll have to learn to live with it. The fleme and pain will always be there. He needs to care for himself more(because he requires 24 hr care). We took him back to the family Dr. because he wasn't urinating and severe pain. He now is on Hospice!
I am sorry to write a BOOK! It's just SO hard. I spent the day with him at a rest hospital and now I'm falling apart. What happened! I've been reading and researching this from the start. And this is NOT how its supposed to go. I haven't found one story that compares. Are all these Dr.s idiots?!? Everything says "go early for check-up or at frist sign". He did and now he's drugged out(to manage the pain)in an rest home! He's fourty with a ten year old daughter and has never smoked, drank or chewed.
What am I going to do?

slr · 09-12-2003, 07:38 PM

I know exactly how you feel. Last June, my spouse was not feeling well and went to the doc who sent him to multiple docs, MRI's, cat scans, bone marrow tests, etc. etc. and the internist told my spouse to get out of his office b/c he had sick people to care for.

Well, one day, my spouse was working in the yard and out popped this huge lump. Off to the allergist who said, this is not allergies. So off to the family doc who gave antibiotic as a precaution and ordered an MRI which came back suspicious. So off to the ENT who did a biopsy and those results came back SCC of the head and neck. Then a radical neck dissection followed by radiation. Diagnosis, stage 4.

I am mad b/c the medical system failed us. This was only the beginning; I am not including the rest of the nightmare that occurred.

There are nasty side effects to radiation treatment. I can recommend a web site for you to go to that all the people there have had some form of Head and Neck Cancer. All cancer is nasty but I honestly believe that head and neck is the worst.

The treatment affects saliva, eating, etc. etc. Did the doc's give your brother meds during radiation to alleviate some of the side effects such as burning skin, thick mucous, nausea, dry mouth, etc. etc.?

Where was your brother treated with radiation?

Let me know if you are interested in the H&N support group.

slr

slr · 09-12-2003, 09:18 PM

Oh I am curious about something though. What did your brother's mouth sore look like? I want to see why the doc's mistook it for a noncancerous sore.

You know, I have asked ENT's, dentists, etc. to describe a mouth sore to me so I can watch for unusual things such as sores in my spouse and I still cannot get a straight answer.

slr

Mybrother · 09-13-2003, 10:32 AM

Im sorry for both your troubles. Thank you for your replies. I needed to know that someone else is out there who cares. It is such a low point for us as a family.
Regaurding his treatment. He went to a hospital in the Ogden Utah area. My reaseach should as one of the best in our area. The Dr. said there was nothing to give him for his side effects. I don't know why. The Hospice did give him something but at this point its just to late to matter much.
His mouth sores started out as a small red sore that wouldn't heal. All of the Dr.s how looked at him at first said right away "no, thats not cancer". But when I researched it online I found pictures to show what to look out for and that was what he had! Sorry I can't remember the site. But it was under a search for oral cancer.
I would be interested in info. on the support gruop.
Thank you.

slr · 09-13-2003, 05:18 PM

What side effects did your brother have that the doc said could not be treated.

Can you describe the sore with more detail? I think it would be beneficial to all out there to know what to look for. As I said, I have had 2 ENT's and a dentist office not describe them adequately and I had a dentist, when asked if they check for cancer, ignore the question.

slr