Hello My 85 yr young dad who never drank or smoked (Boston VA) was diagnosed 9/09 with T3NONMO SCCA of left tonsil; they pulled some teeth he had chemo/radiation; had PET got all clear then came back left retromolar trigone and tonsil; New options - split course radiation - 2 times a day every other week for 8 weeks; may help ease pain, let him use his mouth and shrink tumor - 1 percent cure; Pain mgt/chemo - may help shrink or contain tumor; Option 3 which tumor board does not want would be to cut out jaw; part of tongue, etcc.. but they think he may not recover well due to age, emotional state, area in radiation field. From neck down he is in great health; has gone from 167- 129 pounds... I went and talked with VA oncologist, surgeon and radiation Doctors and am wondering if we should get another opinion.. Also wondering if he should of had tonsil removed in the begining.. Any advice on what you think my dad should do would be greatly appreciated - we want him to have good quality of life for whatever time he has left - currently he is in so much pain (EAR, throat) - he can not eat only uses feeding tube..

Dawn,

I guess it comes down to what your Dad wants to do. 85 is a really good life, an age I sincerely doubt I'll make however IF I'm lucky enough to get to that age...there's no way in hell I'd choose to go through what I've gone through. But EVERYONE is different.

Oregon I believe has a "Death with Dignity" law similar to Washington's, so there's options there as well if that's a path he is looking at. It all depends on personal beliefs etc..

I've always told myself that IF I have a recurrance with a poor prognosis then I'm moving to WA, smoking a lot of medicinal marijuana and checking out via my "Death with Dignity" option when the pain gets more then I care to bare.

Anyway, Dawn, I'm sorry to hear of your Dad's recurrance and we are here to listen and help.

Eric

Dawn, welcome to OCF. Im so glad you found this site. There are many herre who have successfully gone thru chemo/rad treatments. Some have also had surgeries to go along with it. The questions you are asking are your own choices. They are personal and while we arent doctors, only patients and their caregivers.

Your father sounds like he is in good health otherwise and should be able to lead a decent quality of life after he gets thru this. I have a feeding tube too. Ive used mine for almost 3 years. Some people have a feeding tube permanently for all kinds of different reasons.

Have you considered going for a second opinion? A couple OCF members have gone for 3, 4 or even 5 opinions before they chose what their treatment path would be. Please consider this before making a choice.

Ive gone thru chemo/radiation. Ive undergone the jaw removal operation too. That is one long difficult recovery but, it can be done. If your fathers mental state arent positive currently its completely understandable. Many have used antidepressants to get thru this. Pain is something nobody should have to be in. It does not help the patient at all. Many here have used the fentanyl patch. Hopefully you are able to get his pain under control quickly.

I know your job isnt an easy one. Being your fathers caregiver/advocate is something that takes alot of energy and caring. I wish you and your father the very best of luck with your choices.

I would seek another opinion from a CCC:

CCC's

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

BEST CANCER HOSPITALS

http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/

We are really not qualified to make this type of recommendation other than to point you towards those that are medically trained to do so. I personally went to 5 different cancer docs before I ended up with Moffitt and I am very glad I did. Not suggesting the circumstances are even close except for the seeking of additional opinions.

Re the pre Tx surgery...it's very common NOT to remove the tonsil(s) once they have confirmed the presence of the cancer but his Primary (the tonsil tumor) was very large by the Staging you presented so I'm not sure what Moffitt would have recommended but at this point worrying about that is worthless IMO.

What does your Dad want to do? I wish you luck as your options seem to be limited.

Dawn, you have just been given great advice by very knowledable people that have fought this stuff. I think that whatever your dad has done will end up as his decision with your help. As for the age thing, that is in his hands and how old he feels. I am being readied for a third abdominal aorta surgery and then after I will let them remove my lower jaw as both sides of the lower are dead. They let me know I am alive by hurting 24/7 but I can handle it. By the way, I soon will be 75 and that is why to me age is nothing. I wish him well and you for being such a great daughter.

Eric - Thanks for the response - I am not sure if I should reply to each or respond to the entire thread.. so may do both Anyway I was flying back to Portland Oregon after spending the long weekend with my Dad who lives in the Boston area. Dad is a cantankerous patient and a procrastinator, he was one of these guys who did not pay into medicaid B (frugale to the core) since he is a veteran so we are not sure if moms insurance would cover him for a second opinion as others suggest but heck I would pay if i knew I could get him to go - living across the coast is not easy to help but I'll move if I have to if I think I can help. Yes, I think we and the Doctors are concerned if he has the surgery it may be pure hell and he will swap current pain with new set of pain, may spend many months recovering, to get him maybe to where he is now, if he survives and the cancer most likely will come back if they get it all.. But another part of me thinks - it may be worth a shot.. the latest exam showed "The right tonsil, bilateral base of tongue, the endolarynx and pirifoms all appear to be free of disease - significant ulcerative mass in the left retromolar trigone extending into the left tonsil ; Biopsies of the mass were taken from edge to center - No esophagoscopy at this point " He is on all sorts of pain meds ; "Pain Medications; fentanyl Patch 50 ucg every 3 days; breakthough pain - use morphine or oxycodone every 4 hours as needed ; NEW - Gabapentin : 1 tsp twice a day for one week then increase to 2 tsp twice/day. This is for neuropathic pain, we increase dose slowly, may not notice effects until you have been taking for a few weeks" He also
wears an ear plug to help .. he has the worst bad breath that the Dr gave him an antibiotic for but he is also swabbing with Listerine.. Then they are tying to determine if they should remove the rest of his teeth if it is safe to do so post radiation and prior to any new radiation he may choose to get next..

Do you know if one could get a second opinion via a consult over the phone or internet based on his file or would he have to go in - maybe that is a dumb questions

Sorry for the long post

EzJim, sorry for all you have endured but you seem like a real fighter and i truly appreciate your perspective and wish Dad could be more like this.. for I do think if he was chronologically younger the DR's would be more comfortable with surgery...

dacidcpa - thanks for the advice and websites and agree we should look forward not "what if" it to death... As a I mentioned in reply to Eric - Dad is not the greatest patient and maybe a second opinion would help us all ... how does one go about getting a second opinion?

ChirtineB - thank you for the response and sorry if I am overposting.. sorry for all you have endured and you and everyone else on this site - although you are not Doctors, i think your experience and thoughts are as valuable maybe more than advice from some Doctors - Dads pain did seem to improve over the 3 days i was there since they upped his fentanyl patch dose and added gabapentin; Oncologist did mention if he chose to basically do nothing (maybe some more chemo and pain management) - she would come up with some other drug combos to deal with anxiety .. I think I will try to pursue a second opinion..

Dad is a retired nurse so is very good about cleaning his tube, etc.. I am hoping he can gain a few pounds by adding some more cans of ensure to his tube per day and I am also having him use some of the body builder high calorie stuff .. for the Dr stated it would be good if he could gain a few pounds prior to next procedure - whatever that may be..

Oh Yes. Get the 2nd opinion.