I am a caregiver to my husband. I was on this board 2yrs ago and found great solace and info. Lost the password and just started again. My husband and best friend, had his original laryngectomy in 1996. 20+ lymph nodes removed. He was doing very well until June 2005. He felt that something was stuck while swallowing and food would hang up on that spot. The VA wanted to do a surgery and remove his right tonsil. The lesion was infact behind the right tonsil and was extensively biopsied by a doctor outside the VA. He then had IMRT radiation combined with internal radiation delivered through a device placed in his throat. Don't know all the technical terms. Again he was doing better and scans showed nothing worrisome. In April of this year he complained of a sore spot that food got hung up on. The Rad/Onc put him on 2 rounds of antibiotics that seemed to help. There was just this place that wouldn't heal. The last Rad/Onc appointment in June a "polyp" was detected. He returned to the VA for a biopsy and CT scan and the results were inconclusive. On July 16 he had a huge hemorrhage out of his mouth and we took him to the VA ER. At that time head/neck chest x-rays were taken. A week after that he had further biopsies taken, and they returned positive for SCC. It took a while for the CT scans and biopsies to be looked at by ENT surgeons as they are short on staff. What we were told was that there is no "tumor" but a moderate to poorly differentiated area and it was in the muscle tissue. In addition there was no possible surgery as his right carotid artery was completely surrounded as well as the cancer cells being too close to his vertebral artery and subclavian artery. They suggested palliative radiation and hospice. He is still eating soft things and is on pain meds every 4hrs. I'm sorry this is so long but I am afraid that if I start to cry I won't stop. Any suggestions would be welcomed.

EB: God bless you, darling....Keep us posted and let us be your 'shoulder' if you need one..Both of you will certainly be in our prayers! Lois & Buzz in NC

EB,

I am so sorry this is happening to you and your husband. You've already been through so much over the past 10+ years. An article published yesterday? in the New York Times is referenced on this site and it talks about the inconsistencies in cancer care at various sites as well as differences in diagnosis, recommendations for treatment, etc. Perhaps it would help to get a second opinion? You have been given such a difficult diagnosis and prognosis that it might be helpful to see if another specialist agrees. Hopefully, someone on this board will have some info that will help as I can only offer support. My thoughts and prayers are with you and your husband.

Sophie

Dear EB- no one wants to hear the words "palliative treatment or hospice". But if that is the only alternative, then at the very least it will give you all time to get your life organized toward dealing with that scenerio. Have you gotten a 2nd opinion from a major Cancer Center? You don't say where he has been treated other than at the VA and by a Rad\Onc. I know you are feeling like you have been hit by a train and I am so sorry. Amy in the Ozarks

I fully support was Amy says,
you may have done this aready but a 2nd opinion of a major CC may still be a good idea. Even if they come to the same conclusion at least there would not be any little voices.

Markus

Dear friends: I meant to say CHEMO as palliative treatment. The VA is the one in Gainesville FL. The Community Cancer Center is also in Gainesville as they serivice the VA patients for radiation. The Rad/Onc said he could not have any more radiation. We went outside the VA in July of 2005 and went for radiation instead of a possible free flap surgery and I think they may have been offended. We borrowed money to cover expenses. My husbands disease is not considered service connected even though he worked on the flight deck of an aircraft carrier for 4 yrs with no respiration protection, and the fact that they practically gave them cigarettes back in the 60's

We have not really spoken with anyone at the VA except for the ENT surgical nurse who has been very helpful and sympathetic. They sent all the records and test info to Shands at the U of F and their ENT team felt that surgery was not an option as the risks were too great.

Rather than a 2nd opinion I am more concerned that he get the right Chemo cocktail that would be helpful instead of just something to shut us up. As I've said many times to friends, if I knew that exact spot between doormat and bitch (pardon me) I'd be happy to stand right there.

Eb i would love to tell you the trauma rob and i went through with the threat of arterial involvement,but i am too fragile and you are too emotional.Give me a few days and if you want to talk about it my e-mail address is in my profile.

love liz

Right Eb here i am ready and willing.Hows it all going?
Liz

EB,
I am also having palliative chemo, hospice is 'on the cards' for when necessary and reading about Liz and Petey's hospice experiences, that cheers me up on the days when I dare look to the future and what it's going to bring.
Every time I see specialist or have treatment they remind me that it IS palliative, but it still doesn't stop me hoping!

I guess what I've done is 'Hope for the best, but prepare for the worst'
brenda

I was so terrified that Bob may have a recurrence today as we wait for a ct scan to be scheduled. Thanks for reminding me what is really important and that no matter the outcome it is the journey that counts. "Hope for the best but prepare for the worst" is exactly what I needed to hear today. Sending ((((HOPE)))) your way!