Hello, all,

I cannot tell you the courage that everyone's posts have given me.

Last week my ENT confirmed what I already knew from my readings here, though still in shock anyway, that I have stage 4 lingual cancer (more pronounced in right than left, 3-4 cm long), still waiting on pathology to confirm HPV (I pray), metastasized in two lymph nodes, one near my jaw, the other along my aorta. Both are about 2cm long the aorta one a little longer. (I am not smoker or drinker).

I am seeing a radiation oncologist at one cancer center today (I have great fortune to live in NYC) and going for a second opinion at another on Wednesday.

How do I decide between the two? The first is renowned for throat cancer and urged by my ENT and internist, and the second, urged by friends and family, is a world class cancer center and hospital. E.g., the doctor or the hospital? Practically, also, the first is easy to get to.

Thoughts?

Thank you!

Rebecca

Are either of them Comprehensive Cancer Centers? You have a high % chance of testing positive for HPV, appx 70% so let's hope it is. Won't change your treatment much but will/should improve your mental outlook. IMO I would want to be treated by a CCC that see's and treats 1000's of patients like you. Don't get to caught up with personalities. Results are much more important. After seeing 4 different cancer docs I went and stayed with Moffitt. Not only because they are a CCC but they also did not suggest any surgery and gave me the highest survival % of all of them.

Both are, though one isn't on the OCF list, one (not on list) is Continuum- St. Luke -Beth Israel, and other is Sloan Kettering. I am lucky.

You will have a much better feel after your visits. Do make up your mind asap. Post after your visits and maybe we can provide some meaningful feedback. When do you hope to get the HPV findings back? I would want anyone treating me to know that result BEFORE a Tx plan was suggested (and especially agreed to) even though I said it probably won't make that much of a difference.

Thank you, I will post and let you know, thank you!!!. My ENT said there were indications in the pathology report after the needle biopsy of HPV but when I got report itself I saw nothing mentioning HPV. ENT missed the tumor in the surgery for the biopsy (cancer must be somewhere in the fold of the lingual tonsils) but hoping tissues will still be able to confirm HPV. But pandoscopy at showed it is nowhere else.

Results should be back today or tomorrow. And thank you again. Any questions you think useful to ask?

Have many patients like you do they treat?

Obviously, what treatment do they propose?

We will be with you throughout this bump in the road so do use us often.

Thank you!!!!!! Will let you know, and thank you!!!

Welcome Rebecca,

I went to Mt. Sinai, and now I'm with Beth Israel. Dr Harrison is my RO, who also is an ENT specializing in HNC, and can't say enough about him. He used to head the radiation dept at MSKCC, and the whole ENT dept is from there or Mt. Sinai, and took the best if the best when starting their cancer dept and ENT program. Dr. Jacobson is my ENT, also from Mt. Sinai. Someone on this board recently went to MSKCC, Andew, and seen Dr. Lee, RO. I still dislike cause they wouldn't even consult with me lol. Good luck.

Wow, I am seeing Dr. Harrison today. Thank you thank you!
Thank you, this is a great boost and nice confirmation, thank you!!!!

Every RO knows who Dr Harrison is, and others I consulted with said I was in good hands. That's probably why MSKCC did not want to see me. Tell Dr Harrison Paul B. said hello. I just saw him last Monday.

Welcome to OCF! Glad you have found the forum to help you get thru the next few months. You will find tons of info and support here.

A CCC is the best place to get treated. It will give you the greatest chance of beating this.

Wishing you all the best with your appointments.

Hi - welcome and good luck!

Hi Rebecca - welcome to the family. I know you're terrified right now but it sounds from what I'm reading from you and other posters as though you're in great hands. We're here to help in any way we can, as my fellow David says, to get you through this bump in the road.

We too, are getting a second opinion at The Siteman Cancer center in St Louis on Thursday. Alredy met with an Oncologist and today the radiologist from another CCC in St Louis. We will decide based on the treatments offered at both. Our ENT surgeon insists on Erbitrux and IMRT and if any of the specialists have a difference of opinion, we will go back to square one. One center is around the corner, the other a bit more of a treck! By the end of this week we will be ready to make that all important decision about treatment and begin the journey. Really frightened, but moving forward. We know there is a light at the end of this tunnel! Good luck!

Nancy

Hi Rebecca

I'm the Andrew that Paul was referring to. Good luck in your appointments. I saw 4 NYC area centers (Beth Israel, North Shore-LIJ Cancer Institute, NYU Langone, and Sloan Kettering). I had a decent idea of where I wanted to go post all the consults. You are very lucky to be in NYC with so many great hospitals. I actually think that all 4 docs I saw worked/trained at sloan kettering at some point. Paul is right that there is a ton of talented doctors around.

For me, the decision came down to how comfortable I felt with the doctors (asking questions, ability, and experience). Also, MKSCC was the only one who actually found the cancer on my BOT, others only saw the cancer on the tonsils. It seems a bit stupid as I'm sure it would have been discovered later on the PET, but for me it was important the surgeon was comprehensive in the exam. I also liked Dr. Harrison, and I'm sure you don't really have a bad decision you can make. I only disliked 1 doctor and am glad I didn't go with him/her. I'm very happy with Dr. Lee and my other docs at MSKCC.

One thing I would recommend would be to meet with as many docs as possible at each cancer center. You will be interacting and being treated by both a radiation oncologist and medical oncologist. You may also see a surgeon (I did).

Paul - I can understand why you wouldn't like Dr.Lee/MSKCC if they wouldn't even give you a consult. I wonder why they do that.

Good luck and keep asking questions!

Top cancer centers choose you, you don't choose them. It's a matter of success or not that effects their reputation. I was already treated at Mt. Sinai, and with a community MO, RO, had mutiple recurrences, surgeries, and chemo, so my case is complicated, and was risky. Most doctors don't like treating someone that had work done elsewhere, and will ask how come you came here, and they really don't have to treat you. My decision to go elsewhere was the dosage of radiation, no surgery, and was looking at brachytherapy and other options due to the fact I had positive margins, PNI, LVI from my surgery in June 2012 to remove cancer that was free or roaming cancer, and had surgery a month before that was for cancer too, so I knew, and so did the doctors that it would come back, and it did.

I never met Dr. Lee, and don't dislike them, I just didn't like MSK's process. Dr. Lee didn't want to see me after I faxed all my paperwork, which cost me around $400, and running around for a month, and her receptionist or scheduler, forget his name, kept jerking me around saying we need this, and then that when I called about the constant delays, and then consulted with Dr.. Harrison in betwern. After I obtained every single document for the past three years, cd, pathology slides, and sbout 1,000 pages of medical papers, I'm told told I didn't have to bother coming in for a consult and to go with one of the other hospitals I consulted with. Dr. Harrison said, I know you have been shopping around lol, and you will not get a better offer than I'm giving you, which was true.

Anyway, I'm happy, and happy with the outcome, and all are great places.

These are some of the top CCC in Manhattan, by no specific order for ENT, cancer, that I can think of. As Andrew said, we are lucky with all the hospitals. Options are good.

MSKCC
Mount Sinai
Beth Israel
NYU
NY Presbyterian
NY Eye and Ear, for ENT and which is part of Beth Israel
Lenox Hill opened a world class ENT dept. hired the top ENT from MSKCC

Also, three of these hospitals have monthly SPOHNC meeting, support for people with oral head and neck cancer, once a month. I go to the one at Beth Israel the 3rd Thursday of each month, so there is a meeting next week, 2-4pm on the 5th floor, NYU has one, and so does Mt. Sinai, but I don't know their meeting dates, maybe Tue, Wed. You don't have to be treated at any to attend.

Continuing a bit off topic - Its really unfortunate that cancer centers have to spend time thinking about their statistics. I wish that wasn't the case. Glad it worked out well for you but sorry you had to go through the experience and waste of time.

I thought about stopping by one of those meetings, but I'll always be in work (they are all in the afternoon). I saw for many other cities they have meetings a bit later in the evening.

Are all the doctors suggesting the same treatment? That also impacted my decision as there were a few different treatments and a few different variations on the same treatment that were proposed.

It gets confusing in my case since I had 5 recurrences, and yes, different treatment plans. I did have two local MO, RO at one point, who did not want to give me chemo or radiation either due to my condition or possible damage from IMRT the 2nd time.

This last one in June, 2012, all my established doctors, Mt Sinai, local doctors were going to do 50Gy, and Erbitux, which I did not feel confident with just doing, and was looking for something more, probably a miracle, and that's how I found Dr. Harrison.

Dr Harrison said, I want you you listen to me closely, you have one chance, and one chance only to cure this. Just doing 50gy is not going to work, and most likely my cancer will come back, and it will kill me. He proposed a 4 part process of 1, re surgery to get all cancer out, btw it did return in the skin 2. IORT radiation during surgery, 3, a pec flap to the neck, and 4. IMRT for 5 weeks with Erbitux, taxotere to follow. I didn't need to shop around any more, I found my doctor, signed all the papers, and scheduled surgery, so I wasn't going with MSKCC, but just wanted to continue with a consult. Maybe they were right, as not to waste each others time. MSKCC does the same IORT, which was started there by Dr. Harrison, so he is the pioneer, and expert with this surgery, and wrote the book with Intraoperative radiation treatment, and another book, multidisciplinary care for head and neck cancer, and a few others.

Welcome to the site Rebecca Rose, so sorry you need it. When we were choosing between hospitals to deal with my husband's cancer, we had the same question...how will we know which one. It was so overwhelming, the extreme seriousness of the situation, the huge amount of information. The advice we were given, do your homework, get your opinions...then somewhere along the process there will be a clearing, you will know.

That's exactly how it happened. My husband got opinions from Mayo, MD Anderson and University of Chicago...ending up being treated at U of C. By the time we had gotten all of our information, the decision was clear.

We set our priorities early on in the process, and #1 (2, 3...infinity!) getting a good outcome with a good quality of life, over convenience of treatment center, personality of the providers, etc.

The other bit of advice, through this process, you will hear many of our opinions...we are here for you. That said, in the end, nobody has a more vested interest in the outcome that you do. What worked for my family may not work for yours. As long as you're with a CCC, go with your gut. Best of luck through the process, Ana