Welcome ray!

Do you happen to know what stage the cancer is as well as the location?

I concur with the others, go to the top notch CCC, it's okay to get more than one opinion, in fact, I encourage it! You want to get rid of this beast and go through it once, so make it count! You sound like you have all the right motivation you need (your boys and wife) to beat this disease.

Browse the board and write down any questions you may want to ask your team of doctors. We are here for you, you are not alone.

Sorry if I was not clear. They have yet to find the primary source of the cancer. When they removed the cluster of nodes and sent them to pathology they returned the diagnosis of SCC and HPV.

I assume they will find it with the PET scan.

There are no outward signs of any other cancer which is the most alarming. I feel fine, other than being tired from working full time, chasing a 2 year old around and trying to keep my 8.5 month pregnant wife off of her feet.

I just made an appointment at Memorial Sloan Kettering in Manhattan for a second opinion.

Here is a follow up for the group.

If I seek treatment at Memorial Sloan in Manhattan, how are the logistics handled. We live 3 hours away so daily treatment will require a temporary relocation. How debilitating (understanding everyone reacts differently) are treatments? While our insurance is very good, someone still has to work. Just wondering how folks deal with piece.

Thanks,

Ray

Welcome to the OCF!! You are in the right place since you will find receive a lot of help and encouragement. I was once very problematic about my mother-in-law's T4a Mandibular cancer. But since I joined this forum my outlook has changed.

We will be thinking of you and hoping that the best. Eat and rest well. Like what Christine said now is the time to have all the yummy food you crave.

Sending you positive thoughts!!

Ina

Brady,

Sometimes with HPV+ SCC the Primary is eliminated by our immune system AFTER some cancer cells have broken off and find their way to the nodes so it is possible that they may never find the Primary.

My husband has a story very similar to yours. Found a mass in his neck- turned out to be 2 lymph nodes clustered together. Then we went through figuring out where the primary was. PET scan showed BOT and then he had a laryngoscopy with biopsy on 10/10 that confirmed BOT was primary. This was after months of back and forth with various doctors and we finally went to Cleveland Clinic (#2 in US for Head and Neck) and got an accurate dx and recommendations for treatment. We could have had chemo and rad in Cleveland, which would have been very inconvenient and no family support around for us. It appears the standard treatment for this is Cisplatin and Radiation- which can be done closer to home. So my point is, consider going to Sloan for proper diagnosis and recommendations for treatment and then have treatment carried out closer to home. When my husband looked at what living in a hotel would be like for 7 weeks in a place where we had no family support versus being in his own bed every night with family close by, the choice was easy for him. He is like you in that he feels perfectly fine- no symptoms at all- and the time from when he was first officially diagnosed (10/1) to when treatment will actually being (around first week in November) is very long and stressful- as it feels business as usual. Would never know anything was wrong by looking at him or talking to him but all that is about to change.
Good luck and I am praying for you and your family.

Hi Ray,
Some people do handle working for the first few weeks. It's just hard to count on until you are in the thick of it. I know what you mean about the commute. Kevin and I just couldn't see how we could do it and be with the kids since ours are all school age. Luckily we had an mo from Sloan Kettering that had opened a clinic here in Elmira. He is gone now, so not sure what we will do for a recurrence if one happens. Have you asked at Sloan if there is any housing available there? I know I have a friend that had a lodge type place for families going through tx. Not in NY though.
If you do induction chemo you could go there, get it done and go home for a couple weeks. You would have to have a doc nearby for emergencies though. If they do chemo/rads together then it would be everyday for the rads and you are right, you'd have to relocate for the 6 weeks or whatever I guess.
Be sure to write down EVERYONE that says they will help. VERY important to have that support for you and your wife.
Blessings,
Kathy

Ray,

If it turns out to BOT (my guess). The standard treatment is 7 weeks of rad plus chemo. I am three weeks in. I worked from home a little the first 2 weeks. Now, forget it. I don't recommend driving either and I am only 12 miles from the treatment center. I get my second dose of chem tomorrow and expect to be ill for the next week.

Also the three weeks after treatment may be the worst. My point is you are going to find it difficult to work for a couple of months. It could be shorter or it could be much longer.

The treatment is hard stuff. My advice is plan on being out of service for a while. If you get by easier, great. But I can tell you it is not a lot of fun. You will need help. Get all that you can.

Ray, we traveled 3 hours each way for my husbands treatment and luckily heard about The Hope Lodge through the American Cancer Society. It was a blessing finding this wonderful place where we could stay with no charge. Very nice rooms with a 6 community kitchen that are shared. We met very wonderful people that worked there and were there as guests also. There are 3 locations in NY, not sure which would be closest to you.


American Cancer Society Hope Lodge�Buffalo
Buffalo , NY Phone: 716-882-9244

American Cancer Society Hope Lodge Jerome L. Greene Family Center�New York City
New York City , NY Phone: 212-492-8400
, NY
American Cancer Society B. Thomas Golisano Hope Lodge and Hospitality House�Rochester, NY
Rochester , NY Phone: 585-224-4936

Hope this is helpful. As far as driving my husband usually drove especially when we were rushed for time or there was a lot of traffic but I often took over when coming home when he started falling asleep. He is a Pastor and did work much of the time throughout treatment, even drove home Wed. night just to do a parenting class all but two weeks. He never missed a Sunday during treatment although he did look pretty bad for awhile with his red neck and weight loss.

Wishing you the best, Terri

I disagree w/ Lady re "it doesn't matter where you get the TX". IMO it matters a lot. Knowing WHAT the Tx will be and knowing HOW to administer it are as different as knowing what to do to fix your car and knowing how to do it. Designing the correct radiation plan and making sure it is followed can make a huge difference in life altering side effects. Moffitt gave me the option of being treated in St Pete, way closer to my home, but after talking to Moffitt's Dr Trotti, a leader in IMRT technology, I decided to make the 90 round trip miles every day for 7 weeks and I'm glad I did. Remember this is ONLY 7 weeks out of your entire life. Why take a chance with your body and the rest of your life? Go with the best and minimize your risk.