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New York Times Interview

lizziek's picture
lizziek
Posts: 27
Joined: Feb 2011

I joined the group right after my ENT told me I may have cancer. I wanted to let you all know about the interview I had yesterday with a New York Times reporter doing a story on the surgeon, Dr. Eric Genden at Mt. Sinai, who will be doing my biopsy and surgery (transoral robotic and neck resection) this Friday.

Dr. Genden's assistant called me a couple of days ago and told me about the planned NY Times story and asked if I would be willing to be interviewed since I was the next patient up for transoral robotic surgery. Genden has done more of these for head and neck than anyone in New York State. I said sure.

I gave the reporter my story and how I found Dr. Genden by doing internet research after I was told I had probable supraglottic throat cancer by my local ENT. She will email me after the surgery to see how it went. With the increase of oral cancer (probably due to HPV) and the mildness of the symptoms (me a mild sore throat and a little trouble swallowing) I think people need to know about this cancer and get themselves to an ENT when they have these symptoms.

My primary care PA dismissed my persistent sore throat when I told him about it in early December, telling me to just gargle with salt water. They didn't pay attention until two months later when I came back with more symptoms and then referred me to the ENT who I saw two weeks later. I won't know anything for sure till a week after surgery when the pathology reports come in but the MRI and PET show nodes.

I'll let you all know when I have the follow up interview so you can watch for the article.

Wish me luck, surgery is 7:30 am Friday, Eastern time

Lizzie

P.S. I told the reporter about this board.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

That's great. Hope you will post a link to the article.

Best of luck to you on Friday. Will be thinking of you.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

First of all Lizzie, best of luck on Friday morning with your surgery. Mark, had TORS (Trans Oral Robotic Surgery)in May of 2010 in Philadelphia with one of the two surgeons who adapted the surgical robot (used for cardiac and other body parts) for ENT surgeries. We felt Mark was in very good hands (human and mechanical).
Mark is a huge fan of the New York Times and it is a widely read newspaper. So I agree with you whole heartedly that this is a great way to inform and educate the public about the increas in H&N cancers and the HPV factor.
As for the slow diagnosis, I believe that is common. Mark's surgeon feels 3 months is acceptable for primaries to figure it out. Truth is doctors are taught when you hear hoof beats think horses not zebras. This cancer is zebra, and it is common to think sinus infection, ear infection, blah blah blah before thinking cancer. Mark was on 3 regimes of antibiotics before he was sent for a CT scan. His process was greater than 3 months, but our energy went into fighting cancer rather that being angry about the time it took to diagnose.
Again, best of luck to you on Friday and we will look for your article in an upcoming NY Times.
Kim

lizziek's picture
lizziek
Posts: 27
Joined: Feb 2011

I am glad to hear about his good experience with TORS.

Sorry about the rant. I can see why they don't want to rush you to a specialist for a sore throat. I just hope with some press that doctors (and the public )think about the possibility of a zebra.

I read an article where they are thinking of recommending primary care physicians use the ENT scopes. I think that is a great idea. If an ENT PA can do it, so could a good primary care doctor. I think more of these cancers would get caught early.

Lizzie

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

It does sound that, Lizzie. Hopefully, as this thing goes forward, it'll stay okay with you. Did you stay anonymous? Reckon this'll add a little more to your C experience. Way I see it, with Dr. Genden perhaps knowing you talked to the Reporter- zero chance of error in any way. Know you'll get the best solution(s) possible.

7:30 Eastern is 6:30 my time. Will say a Prayer for you.

Believe

kcass

lizziek's picture
lizziek
Posts: 27
Joined: Feb 2011

I am not concerned about Dr. Genden, but the thought did occur to me to have my husband let the nurses on the floor know about the interview. Couldn't hurt.

luv2cut1's picture
luv2cut1
Posts: 285
Joined: Oct 2010

For your upcoming surgery and treatment. Thank you for helping to educate the public.

Myka

Ingrid K's picture
Ingrid K
Posts: 809
Joined: Mar 2011

Sending you best wishes and many prayers for your surgery on Friday.
All the best.

Hondo's picture
Hondo
Posts: 5601
Joined: Apr 2009

Hope it all goes well for you this coming Friday, will keep you in prayer.

Hondo

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Would be very interested to read this interview, please keep us posted so we can all read it.

Sending you prayers and positive thoughts for tomorrow. You will do well!!

Stay strong,
Glenna

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

I too had TORS, and my ENT trained at PENN where this was developed. My doc might have trained with or trained under the doc that did Mark's surgery. It is a fantastic procedure, and they were able to save alot of structure by using this very precise and exacting machine.

I wish you the best and look forward to reading the article.

Mike

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

Lizzie, that'a great you had an opportunity to get Head and Neck cancer in the New York Times.

Glenn's ENT surgeon had his TORS training in PA also. Glenn never ended up having any other surgery than the modified radical neck because they coulnd't locate a primary but I was very releived to hear about it as an option.

Good luck, I know you'll do great. We're all here pulling for you.

Lisa

rozaroo
Posts: 667
Joined: Apr 2010

My thought's & prayer's are with you on your upcoming surgery! Also please keep us posted on your interview with the NYT!
God Bless
Roz

Hondo's picture
Hondo
Posts: 5601
Joined: Apr 2009

Prayers all do for you.

Hondo

as123
Posts: 1
Joined: Mar 2011

Hi, I'm the writer Liz mentions. I greatly appreciated her comments and am eager to speak with others as well. I'm especially interested to get the perspective of a man who had HPV+ cancer and underwent transoral robotic surgery as well as reconstruction. Will you send me a message if you're in that category and would like to share your experience? Thanks so much

tcw
Posts: 1
Joined: Mar 2011

Before anyone has neck dissection for a tongue cancer, I recommend getting a 2nd opinion from a non-surgeon familiar with treating this disease. No matter how good and precise transoral robotic surgery is, you should feel certain it is necessary. The ENT I saw after diagnosis for base of tongue cancer with a single lymph node metastasis to a lymph node recommended it, and I was scheduled when I got a 2nd opinion from a leading oncologist in this type of cancer. That 2nd opinion convinced me the dissection was unnecessary. I went through chemoradiation and so far I'm clean.

donna340
Posts: 72
Joined: Nov 2010

Good luck with surgery today. Sending lots of prayers!

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