Hello All,

Just came back from my dad's radiologist check-up. Just to recap, diagnosed with SCC right tonsil 6/03. Doctors wanted a mediport and feeding tube inserted. That he did. 38 IMRT treatments with chemo (cisplatin and 5FU). 40 HBO treatments. New tumor diagnosed 7/04. Began 2nd round of chemo(taxol with carboplatin) in August of this year.

Anyway we went today for a routine check-up. Said all is as good as it can get. I then asked him about working on his Trismus and his swallowing. It's been 20 months since feeding tube was inserted. Was told the damage is too much. He will never eat or drink by mouth again. I feel like all the air has been let out of me. All along, I've been telling him to hang on. We'll get you eating soon. Just think how good the garden vegetables will taste next year. What an idiot!!! I could just feel his depression sink further (if its possible) after the doctor said those words. On one hand I appreciate his honesty. No one ever said that the feeding tube would not be reversed. But on the other hand, I almost wish we didn't know. This will only make him more resistant to keep up with the chemo. He's been more depressed than usual these last couple of weeks. Maybe deep down he already knew. Just said to me this morning "This is not a life." How do you argue with that?

Said he no longer wishes to go to the throat specialist. He would insert that scope thing down his nose to the effected area. That is the only way to monitor it. Can't open his mouth more than 3/4 of an inch anyway.

Sorry for the shitty attitude, but I just feel betrayed.

VickieM

Hi, Vickie. I know you do feel betrayed and your attitude is shitty but you have every right to feel this way. My husband has basically suffered the same as your dad and just now had yet another PET and found cancer in nasopharynx -- it just seems so unfair sometimes! You encourage your loved one to do the best they can under terrible circumstances and then they get knocked down another notch. However, things do get better. We were looking at the PEG for at least a year and it was removed a month ago. Now, my husband has had radical neck dissection and is undergoing additional rad but can eat, if only very smooth things, so he feels like he's made progress. Your dad is depressed and it is hard for him to overcome that with everything going on in his life. I'll pray for you and your family to find additional strength. MIllie

hello miss Vickie,

while i was in treatment i met a fellow who had traveled from overseas to see if there was a chance for reconstructing his throat so that he could eat again. he was one of the most upbeat guys you would ever want to meet. he had friends visit, went to a pro baseball game, smiled and enjoyed life. his wife was a saint. she mixed special meals for him in a blender and was just cheery. unfortunately, the docs told him that at this time there was nothing they could do for him and he would have to continue with the peg. they were not happy to hear the news, got themselves together and returned home. upon returning to thier tropical island setting, the sun still rose and they got on with their lives. hoping that sometme in the future things would change and he would be eating again.

i went thru two holiday seasons without being able to eat.. i put on a happy face, but really it just wasn't the same. and life around other folks was different too, because so much of our culture is related to eating. fortunately i'm back to eating now, but it took about 18 months.

i only hope that your dad's situation is also temporary... the docs may have overstated the situation, if so encourage him to continue to do those things that will get him eating again. if on the otherhand it is not realistic to expect to eat again, i am here to say that he can adjust to it with the loving care of family and friends. he will need lots of support because this is a heavy load for anyone. yet he can do it.. and you can help.

best wishes,
larryb

Larry and Millie,

thanks for the words of encouragement. Sometimes you just need that slap back to reality. Though life at times can be frustrating and this stage in the game, it's better than the alternative. Perhaps, he will still try to swallow, and prove the doctor wrong.
Thanks and God bless!!!

VickieM

Vickie, did he have surgery or just radiation & chemo?

Erik,

Surgery was not an option due to the location of the growth. Had radiation and chemo.

VickieM

Vickie.
I would feel betrayed too. IMRT is supposed to preserve the quality of life. I had the same condition and the same treatment with the exception that I just had Cisplatin and no HBO. I can't believe that he is having such problems. If you are not already being seen at a comprehensive cancer center - this is the time to get a referal.

What's the deal on the second tumor? Is it in the original site? Is this playing a role in the swallowing problem?

Another small difference - I never had a feeding tube - refused it AMA. Maybe he's been on the tube for so long that he will need extensive therapy to deal with the trismus and swallowing issues. Get a referal to a specialist - don't give up hope. Others here have had similar problems and been able to conquer them.

Vickie:
Is you father a veteran? The VA , in each of their hospitals, have 2nd to none disphagia clinics.
Darrell

Darrell,

NO, my father is not a veteran. After reading these posts, I came away more uplifted than before. I spoke with my father. Told him a doctor is just a doctor. They are not Gods. They can be wrong too. It was the radiologist that told him he would never get off the tube. So maybe we need to see a specialist, much to my surprise, he agreed. I think somewhere in my piles of papers, I have an order for a swallow study. But I don't know what type of doctor or therapist I should be researching to help with the swallowing and the trismus. Can anyone offer any suggestions. Thanks again and God Bless.


VickieM

the doc that did my stretch was a
gastroenterologist. he did a ballon thing. ENT's around here don't do ballon stuff. it worked for me, it could work for him. the proceedure is a very easy one, but left me with a sore throat for about a week. i needed to have it done twice.

i did the swallowing thing with barrium and think it was a complete waste of time.

i think that i'd go for the stretch and forgo the swallowing study if possible.

cu,
larryb

First words of the Hippocratic Oath -- PRIMUM NON NOCERE -- First Do No Harm.

Unfortunately, a lot of doctors lose sight of this when treating serious illnesses and neglect the person that's wrapped around that cancer, or bad heart, or whatever.

People have to have hope for the future -- it's been shown in peer-reviewed studies that optimistic people survive cancer better than pessimistic patients. So why isn't quality-of-life given a more important focus? For many it is as important as controlling the disease. Polls of cancer patients usually find that most would prefer less time and better QOL than more time with lower QOL.

We need to be better advocates for outselves...as someone else posted, doctors are not gods, don't treat them as if they were. It is YOUR life, not theirs'...

Barry Cooper's wife Gail
(using his log-in)

SPORE advocate, JH Urology