Hello All,
I'm thrilled to have found this forum this evening.

My Dad was diagnosed with stage 4 throat cancer (SSC, BOT) in January of 2006. He was just diagnosed today with a recurrence- stage 1-2, SCC in same area.

He has been given two options- surgery or nothing. Surgery has some serious quality of life issues attached to it (trach and feeding tube, speech concerns, etc).

No surgery has obvious issues, with life-threatening symptoms likely to occur within 6 months to a year. Physically he feels fine now (a non-healing sore throat is what led him to seek medical help) but emotionally he is a mess.

My first question is, where do you advise we seek a second opinion?

My second question is where do you suggest I find a resource for him of people like him that had to make this decision. He'd like to hear from someone who has been in his shoes to see how they decided what to do.

We are in Columbus, Ohio at the James Cancer Hospital at OSU. His SO suggested Case, Cleveland, UofM and Pittsburgh for second opinions. I have blindly surfed three of those sites and found people that seem most qualified but a personal rec from someone other than his SO would be awesome.

Thanks in advance for your time and any advice you can send my way. I have 3 little kids and I hate to see them lose their grandfather, more than I hate to see me lose my Dad. We love that guy.
Jenni

Welcome to OCF. You will find members here who have been successfully treated all over the world and probably recommend their center. A Comprehensive Cancer Center (CCC) would be the best place to seek a second opinion. These facilities usually have top notch physicians who work with a team based approach.

Im a bit surprised that you were given the second option. If your father is otherwise healthy than why would doing nothing even be an option? Many OC patients have had radiation twice with a few here even going thru it 3 times. Going thru radiation can be brutal but it can also take care of eliminating the cancer just like surgery can. There are options out there, you just need to get some other opinions where they dont say giving up is one of the 2 choices.

As far as a recurrence goes, many here (including myself) have been thru OC more than once. It can be done!

Best wishes!!!

PS... Almost forgot. Here is the CCC list.

CCC list

Thanks for the speedy reply Christine! It's reassuring to see 3 of the 4 suggested institutions on the list you linked.
Jenni

Hi Jenni,

welcome to OCF. Hang here for the best first hand info direct from patients going through all the various forms of oral cancer treatments.

I echo the why surgery or nothing? That sounds quite strange but of course we have no idea of the details and condition of your Dad and what may discount other forms of treatment.

Get other team based (i.e. tumor board) review and recommendation. I would be really surprised if they were to agree it is surgery or nothing.

Good luck ,
Don

Hi Jenni:
Sorry to hear about your dad's recurrence. It's great that you are doing the legwork to find answers to these important questions for him.

I don't know how his first battle with cancer went. He may have been able to keep an upbeat attitude throughout treatment or maybe he suffered some of the psychological side effects that plague many with cancer.

Now that he is having a recurrence he may very well need the frequent support that the family members on this forum are so good at providing. That means he needs to be on the forum himself. If you have to be his intermediary then besides overloading you with work it will diminish the quality of support he can get here.

So, long story short, try to get him to join the forum himself. Some people aren't real computer literate and have a certain degree of fear of the computer. You may have to take on the role of computer tutor if he is one of these. But the quality and frequency of support he can get for himself will make the efforts worth it.

If he is in fact computer literate and just hasn't joined the forum yet, then my apologies for mis-understanding the situation.

You stay a member too, we support caregivers just as well as we support patients.

Good luck,
Tony

Hi there I'm going to agree if this is his first recurrence, I would be seeking a second opinion on the lack of a second choice -

It's been almost 8 years since a previous cancer... Aside from medicine changing yearly - (monthly) I would thing that at this point he is good candidate for more radiation (which this type of cancer responds well to) as opposed to a life letting surgery -

I can't say for certain - because I don't know his details - but there are a few here who've had more than two rounds of radiation - it does have long term effects but I imagine it will be less traumatic than the surgery.

I really would search out a second opinion. Hugs and welcome

Thanks everybody for your replies here. I think he is interested in a second opinion.
As for getting on the forum himself, I don't see my Dad getting fulfillment here though I certainly would if I were in his shoes. He is not a computer guy, not a typer, not much of a reader. He's mostly a do-er. Face-to-face counts a lot to him. I'll ask about getting him on here and I'll sing its praises, but it won't surprise me if he passes.

At my treatment facility they have a head and neck cancer support group. Even in this small 35,000 population town our group has about 11 members.

If your dad isn't the computer type, maybe he could get some of his support needs fulfilled via the face to face they will have. As Maura Gillison (one of the leading head neck cancer researchers in the U.S. is also at OSU I think they probably would have a pretty good support group).

For our group - I've already asked them to join our family.

Good luck

I also say go for a 2nd and 3rd opinion. Although lucky, I have had 8 recurrences that were treatable, so far. I'm on my 5th different radiation treatment, and there are ways to do more radiation in some, and had 192Gy, really more with IORT, so far, while most say they had the max at 70Gy, and can't have any more. Not all doctors or hospitals may have experience to do this or want to risk it, but I have some of the best. For recurrences, surgery is usually the best option, followed by maybe radiation, chemo radiation, but each case is unique. NYC has the most top doctors, and hospitals in the country, and know a half dozen that are top in ENT, and treat recurrences often. If possible, you can stay at Hope Lodge on 32nd for free, which I can't say enough about, and consult with the various hospitals in Manhattan...Beth Israel, Mt. Sinai, MSKCC, NYU, NY Presbyterian, Lenox Hill to name a few.

Best of luck.