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Old 09-11-2003, 12:27 AM   #1
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Unhappy oral cancer terminal?

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?

 
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Old 09-12-2003, 06:38 PM   #2
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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

 
Old 09-12-2003, 08:18 PM   #3
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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

 
Old 09-13-2003, 09:32 AM   #4
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Unhappy

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.

 
Old 09-13-2003, 04:18 PM   #5
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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

 
Old 09-14-2003, 11:01 PM   #6
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Unhappy

The sores where small bright red. Like an open wound that would not heal. They grew and spread and gray/white sores appeared.
I would stress that if you have a sore that is not healing, you need to have it checked out until you have answers.
With his radiation side effects. He was given an antinausea medication along with pain and anxiety med.s. But nothing for the thick musus and fleme that caused so much choking. He could not swallow after third week of treatment. After first week he could only get down about a half teaspoon of liquid. Feeding tube was put in after third. But this does NOT seem to be the norm for most people. I do not want to scare anyone. Mostly looking for a hand and to help anyone who might think twice about getting checked out.
Hope this is helpful.
If anyone is out there who has been through anything like this, please respond. I feel so alone with it all. I don't know what to do to help my brother during this terrible time for him. I'm not ready to lose him. And the thought of his suffering going on and on is just to much to bear. How do care givers make it through and provide our loved ones with the comfort they need? I can't even go shopping without seeing things he would like as a gift and than...oh, reality. Every time I eat a bite of food I feel guilty. I look at his daughter and see his eyes looking back. I already miss him SO much I can't stand it.
I have faith in where he's going. I just don't know how to handle the way he has to go.

 
Old 09-14-2003, 11:15 PM   #7
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I am sorry my responses are so difficult to understand! I am pretty much mental mush with all that is going on.
My brother recieved radiation targeted at his mouth, neck,throat and base of skull.

 
Old 09-15-2003, 06:19 AM   #8
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I will write you more tonight as my spouse is going through radiation treatment currently for head and neck cancer.

I am also waiting for approval from the administrator of this list to be able to give you the support website address. As soon as I know that I can do that, I will post again.

Look for a response from me tonight. I am on the west coast so take into consideration that I am 3 hours earlier than the east coast.

slr

 
Old 09-15-2003, 10:19 PM   #9
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Hello MyBrother

I was going to tell you a little bit about radiation treatment.

It is normal for the doc's to want to put in a PEG tube (feeding tube) prior to the start of radiation in case the patient finds it difficult to swallow or eat.

My spouse was against this but had one anyway and it was a nightmare and after the PEG was put in, in the middle of a storm I had to make a trip to the ER and they admitted my spouse. That ER visit was another nightmare that I won't go into right now. The PEG had to be removed but they didn't do it then, they waited until radiation had started and then my spouse was told not to eat anything the day the PEG was removed and only clear liquids for the next 2-3 days. Well, we all know that a radiation patient has to eat!!

If this had been told to us, we would have had the PEG removed during the hospital stay.

I don't understand the course of radiation treatment for your brother if the cancer was in the mouth. Why did they radiate the base of his skull?

What exactly was his diagnosis? What was his exact staging? What exactly were the symptoms he had prior to diagnosis?

As far as the support group goes, I am sorry but the admin of this health board told me that I cannot give you the information as it is against their rules.

If I had another way to get the information to you, I would do it as I think it would help you alot. In the meantime, I will be happy to give you any information that I can.

I know this much, your brother should have been given information about his skin drying and what to use to alleviate that. He should have been given more than just pain meds and antinausea meds. He should have been given something to alleviate the burning in the mouth; he should have been given something for dry mouth if he experienced that. Was he offered therapy to alleviate dry mouth?

Let me tell you this (I am sure you already know this) but all cancer is horrible. I have watched a close friend die of a brain tumor; another close friend die of stomach cancer; a boss die of pancreatic cancer and I have a good friend that has pancreatic cancer right not; an aunt die of breast cancer that spread to her hip and her husband died of prostate cancer; my inlaw has had prostate and colon cancer; I only know of one that survived and she had liver cancer and I would never have expected her to live. Despite all of that, I can tell you that head and neck cancer and the side effects of the treatment is horrific (or can be). It is worse than the side effects of other cancers because of the location of the treatment.

About all I can offer you is that I understand what you are going through and it is horrific.

slr

P.S. Sorry about the support group issue. I thought you would be able to benefit from it. But, if I leave this board, I want to do it on my own and not because they banned me.

God Bless you and your family.

slr

 
Old 09-15-2003, 10:19 PM   #10
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Hello MyBrother

I was going to tell you a little bit about radiation treatment.

It is normal for the doc's to want to put in a PEG tube (feeding tube) prior to the start of radiation in case the patient finds it difficult to swallow or eat.

My spouse was against this but had one anyway and it was a nightmare and after the PEG was put in, in the middle of a storm I had to make a trip to the ER and they admitted my spouse. That ER visit was another nightmare that I won't go into right now. The PEG had to be removed but they didn't do it then, they waited until radiation had started and then my spouse was told not to eat anything the day the PEG was removed and only clear liquids for the next 2-3 days. Well, we all know that a radiation patient has to eat!!

If this had been told to us, we would have had the PEG removed during the hospital stay.

I don't understand the course of radiation treatment for your brother if the cancer was in the mouth. Why did they radiate the base of his skull?

What exactly was his diagnosis? What was his exact staging? What exactly were the symptoms he had prior to diagnosis?

As far as the support group goes, I am sorry but the admin of this health board told me that I cannot give you the information as it is against their rules.

If I had another way to get the information to you, I would do it as I think it would help you alot. In the meantime, I will be happy to give you any information that I can.

I know this much, your brother should have been given information about his skin drying and what to use to alleviate that. He should have been given more than just pain meds and antinausea meds. He should have been given something to alleviate the burning in the mouth; he should have been given something for dry mouth if he experienced that. Was he offered therapy to alleviate dry mouth?

Let me tell you this (I am sure you already know this) but all cancer is horrible. I have watched a close friend die of a brain tumor; another close friend die of stomach cancer; a boss die of pancreatic cancer and I have a good friend that has pancreatic cancer right not; an aunt die of breast cancer that spread to her hip and her husband died of prostate cancer; my inlaw has had prostate and colon cancer; I only know of one that survived and she had liver cancer and I would never have expected her to live. Despite all of that, I can tell you that head and neck cancer and the side effects of the treatment is horrific (or can be). It is worse than the side effects of other cancers because of the location of the treatment.

About all I can offer you is that I understand what you are going through and it is horrific.

slr

P.S. Sorry about the support group issue. I thought you would be able to benefit from it. But, if I leave this board, I want to do it on my own and not because they banned me.

God Bless you and your family.

slr

 
Old 09-15-2003, 10:52 PM   #11
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Thank you for taking so much time. I have been searching and have found a support group that I think might help.
I am so sorry for all the pain you have gone through! I knew oral cancer was bad but with Dr.s saying "its do-able", I was blown over when he was put terminal care. They won't give a time line. Off record three mouths.
As far as his trials go he has suffered about everything you could think of. Started back in Nov. with a sore inside his check, than tongue, than throat.
They did radiation at the base of his skull because of a small lesion that was shown on the CT scan.
He was told he could not take anything to help with inside of his mouth during radiation. He had it all.
He had severe responses to everything.
Thank you for your help.

 
Old 09-30-2003, 03:52 PM   #12
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to "my brother"
I am so sorry to hear of your situation.I can however empathize.My partner had oral cancer of the tongue and was also mis-diagnosed for several months-the tumor grew to nearly 2 inchs, surgary not an option due to size and location.she is very fortunate to be alive. she was given experimental dosages of chemo/radiation.
the agony she has and still is going thru (after two years out of treatment) is incredible.altho the intensity of trements were what was needed for her situation...they now base their treatments on much less for others. the doctors cant tell us what would be considered "normal" side effects ect. as she her treatment plan unique. her newest battle is somthing called "radiation necrosis"....
I am so sory for the suffering you are both going thru--I know how hard it is to watch and not be able to help as you would want

 
Old 10-01-2003, 02:09 AM   #13
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Are you sure that when they started treatment, the cancer hadn't already spread, or that the tongue cancer was not just a secondary stage (metastasis)? Why else would they have been radiating the base of his skull etc. instead of just the site of the sores?

The symptoms you describe do not sound like they come from the oral cancer alone, this sounds like it's spread to other places as well. Unfortunately, doctors often fail to do a full-body scan once they've decided on the cause of a problem or the site of a cancer, regardless of what other problems the patient has!

[This message has been edited by Redhead23 (edited 10-01-2003).]
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Old 01-13-2004, 05:55 AM   #14
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Re: oral cancer terminal?

Quote:
Originally Posted by slr
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
Hope things are better for you. I would be appreciative of the sit you mentioned for Head & Neck Cancer. Thanks! Suzi

 
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