NEW YORK - new Dx, please help

bpell0402

I've been scrolling through some posts, what a great website.

My mother was just diagnosed with Metastatic Squamous Cell from a cancerous lymph node which was just resected.. we thought was a branchial cleft cyst. Similiar stories have been comforting.

Anyone with a specific doctor in NY to recommend? This is so confusing. I am thinking of Sloan Kettering, any one with specific experiences/recommendation on WHO to make appointment with? Help is much appreciated.

This is so shocking and overwhelming. I am IN the medical field and its still confusing. My mother is in complete denial which is also difficult.

We are scheduled for PET scan on wed.

Thank you for any responses to this post and all other posting which i continue to go through. Similiar storied are very comforting.

mswijiknyc

NYC docs
Sloan Kettering is a great place, although Pat never went there. He initially went through Weill Cornell Medical College of NY Presbeterian and the ENT staff there. His H&N surgeon is very gifted, but can be a bit stiff on the personable side. Beth Israel has the best board certified H&N rad onco in NY state and Pat was scheduled to go but didn't make it in to see him.

If you need more info please message me. Lots of hugs and hang in there

April

bpell0402

mswijiknyc said:

NYC docs
Sloan Kettering is a great place, although Pat never went there. He initially went through Weill Cornell Medical College of NY Presbeterian and the ENT staff there. His H&N surgeon is very gifted, but can be a bit stiff on the personable side. Beth Israel has the best board certified H&N rad onco in NY state and Pat was scheduled to go but didn't make it in to see him.

If you need more info please message me. Lots of hugs and hang in there

April

April,
I am sorry for your
April,
I am sorry for your Loss. Thank you for the information. A friends father has had treatment at Beth Israel.

These discussion boards are amazing, so many inspirational stories, supporting comments and information. I feel much more prepared to ask questions to the doctor this Wed.

The support on this board is so amazing. After some more processing Im sure my mother will benefit from speaking to others, just to see she is not alone.

thank you for your help

Kimba1505

bpell0402 said:

April,
I am sorry for your
April,
I am sorry for your Loss. Thank you for the information. A friends father has had treatment at Beth Israel.

These discussion boards are amazing, so many inspirational stories, supporting comments and information. I feel much more prepared to ask questions to the doctor this Wed.

The support on this board is so amazing. After some more processing Im sure my mother will benefit from speaking to others, just to see she is not alone.

thank you for your help

Great Site.
You have found a great site for answers, good questions, support, care, and even a laugh 24/7. The guy in the picture...yep, behind my hair, is Mark, my partner. He was diagnosed at 53 last April SCC, left tonsil, Stage IV, HPV+ mets to lymph nodes and neck muscle. He had a lot of surgery including radical neck dissection, plus 6 weeks of chemo and radiation. He has had 2 post treatment PETs and both have been clean.
You can find a full range of H&N diagnoses and a full range of treatments and people's experiences here. There are people who are directly in the fight, and those who love them. So please tell your mom of us, and stay on board yourself. I could not have been the caretaker to Mark that I was with out the people here.
As for NY docs. I cannot help you. Mark had amazing physicians here in Philly.
Best to you and your mom,
Kim

Hondo

Kimba1505 said:

Great Site.
You have found a great site for answers, good questions, support, care, and even a laugh 24/7. The guy in the picture...yep, behind my hair, is Mark, my partner. He was diagnosed at 53 last April SCC, left tonsil, Stage IV, HPV+ mets to lymph nodes and neck muscle. He had a lot of surgery including radical neck dissection, plus 6 weeks of chemo and radiation. He has had 2 post treatment PETs and both have been clean.
You can find a full range of H&N diagnoses and a full range of treatments and people's experiences here. There are people who are directly in the fight, and those who love them. So please tell your mom of us, and stay on board yourself. I could not have been the caretaker to Mark that I was with out the people here.
As for NY docs. I cannot help you. Mark had amazing physicians here in Philly.
Best to you and your mom,
Kim

Hi bpell

It’s hard that is for sure but hang in there and get the PET results and see what they say. Your Mother like many of us will be going through some very hard times that will affect the hold family and she will need the help and support of everyone. CSN is a great place for you to get info on what to expect if she needs treatment.

Welcome to our Family
Hondo

UWSNYC

Eric Genden, Professor and Chairman - Head and Neck Surgery, Mount Sinai Medical Center

Skiffin16

Welcome Aboard
Sorry to meet this way, but you have found a great group of people....

Best,
John

Dazey

Sloan Kettering
I saw Dr. Patel in Head and Neck - excellent in so many ways, but especially in taking the time to talk to me and explain things in ways that could be understood. He told me immediately that the MSCC with unknown primary that I had was "curable with radiation, not palliative". He did multiple biopsies and referred me to their radiation specialist in Sleepy Hollow. That doctor was equally excellent and agreed that I could not possibly travel that distance everyday for treatment. He contacted a cancer center closer to me and discussed treatment with them. Once he was satisfied that they could do the treatment (IMRT)to his specifications, he called me and gave the okay and guidance in what would happen next. I cannot recommend Sloan-Kettering enough. They were such a source of comfort, knowledge and professionalism. I am now 16 months post treatment - cat scans are negative;I am followed by the local radiation oncologist (formerly with MD Anderson)who I also have the utmost trust in. I see my local ENT every 2 months now. Feel fine and continue with life - that is a good thing. Feel free to Private Message me if you have any questions. Dazey

bpell0402

Dazey said:

Sloan Kettering
I saw Dr. Patel in Head and Neck - excellent in so many ways, but especially in taking the time to talk to me and explain things in ways that could be understood. He told me immediately that the MSCC with unknown primary that I had was "curable with radiation, not palliative". He did multiple biopsies and referred me to their radiation specialist in Sleepy Hollow. That doctor was equally excellent and agreed that I could not possibly travel that distance everyday for treatment. He contacted a cancer center closer to me and discussed treatment with them. Once he was satisfied that they could do the treatment (IMRT)to his specifications, he called me and gave the okay and guidance in what would happen next. I cannot recommend Sloan-Kettering enough. They were such a source of comfort, knowledge and professionalism. I am now 16 months post treatment - cat scans are negative;I am followed by the local radiation oncologist (formerly with MD Anderson)who I also have the utmost trust in. I see my local ENT every 2 months now. Feel fine and continue with life - that is a good thing. Feel free to Private Message me if you have any questions. Dazey

Can't thank everyone enough.
Can't thank everyone enough. This place here is amazing.

Right now we have started at Mount Sinai ( Mnt Sinai Head and Neck oncologist did the surgery).. and i am trying to schedule second opinion at Sloan.

Pet scan done today .. right now i have a "prelimiary" report which is basically negative. Still not sure if thats a good thing or a bad thing. I see that "unknown primary" is very common... a part of me thinks maybe knowing the primary is better.. well probably not "better" .. im sure you know what i mean.

Mom is in complete denial which is making this difficult. She is certain that the pathology is wrong, this is a big mistake and if a pet scan is "negative" she should not need treatment and that doctors just want to make money and do surgery. My mother is stubborn and she can be very negative and weak at times. Still my best friend though

We see our first radation specialist on tuesday. Will be doing some research on here about different radation tonight.

Glad i can vent to people who understand. I cant sleep anymore at night though, so many racing thoughts...

Taking it a day at a time. . .
-BPell

Lena Rose

bpell0402 said:

Can't thank everyone enough.
Can't thank everyone enough. This place here is amazing.

Right now we have started at Mount Sinai ( Mnt Sinai Head and Neck oncologist did the surgery).. and i am trying to schedule second opinion at Sloan.

Pet scan done today .. right now i have a "prelimiary" report which is basically negative. Still not sure if thats a good thing or a bad thing. I see that "unknown primary" is very common... a part of me thinks maybe knowing the primary is better.. well probably not "better" .. im sure you know what i mean.

Mom is in complete denial which is making this difficult. She is certain that the pathology is wrong, this is a big mistake and if a pet scan is "negative" she should not need treatment and that doctors just want to make money and do surgery. My mother is stubborn and she can be very negative and weak at times. Still my best friend though

We see our first radation specialist on tuesday. Will be doing some research on here about different radation tonight.

Glad i can vent to people who understand. I cant sleep anymore at night though, so many racing thoughts...

Taking it a day at a time. . .
-BPell

Highly recommend
Dr. Marshall Posner at Mount Sinai. He recently transferred from Dana Farber. He's an expert in H & N cancers, especially HPV related.

Chas616

North Shore Long Islsnd Jewish
North Shore LIJ just opened a new Head and Neck center.All phases of treatment are handled under the same roof.I had my treatments at the North Shore Don Monti Cancer Center great people in a great teaching hospital.
Good Luck
Chas

Pam M

Hello
Just wanted to wish you and yours well.

baleeve

Lena Rose said:

Highly recommend
Dr. Marshall Posner at Mount Sinai. He recently transferred from Dana Farber. He's an expert in H & N cancers, especially HPV related.

Second recommendation for Dr. Posner at Mount Sinai
I second Lena Rose's recommendation. I was treated by Dr. Marshall Posner at Dana Farber from 09/09 -12/09 for Stage IV SCC of the left tonsil Met. to neck, HPV+ tumor and tonsil.

I am a 42 year old non smoker, non drinker. Mother of three wonder boys 18, 8 and 6.

Not only is Dr. Posner one of the kindest doctors I've ever met but he is the foremost expert on SCC HPV+. He had been battling this cancer for over 30 years.

Everything he told me to expect happened and when a side effect happened he knew exactly what to do. I miss him. And if the ride wasn't so far I would travel to follow up with him but luckily Dana Farber has an amazing Head and Neck staff!

Trust me, HE IS YOUR DOCTOR!

I was in LA when diagnosed and if I had stayed there I may be dead now. Dr. Posner and Dana Farber saved my life.

My prayers are with you. STAY MOTIVATED. And be kind to yourself!! You will run the gamut of emotions and give yourself permission to. Its normal. Good Luck. God Speed.

Kelli



Highly recommend
Dr. Marshall Posner at Mount Sinai. He recently transferred from Dana Farber. He's an expert in H & N cancers, especially HPV related.