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Where to go for a second opinion

lornal's picture
lornal
Posts: 319
Joined: Sep 2013

My surgeon reviewed the CT scans from today, and is leaning towards not operable.  But, he will be conferring with a neurosurgeon tomorrow. 

I do want to get a second opinion - its not something that I ahve done before.

What places would you recommend going to? - the cancer is in the neck, and I guess creeping down the esophagus (or maybe the other way around).

The doctor mentioned MD Anderson, and Sloan-Kettering - and someplace in Ohio.

Are there others?

And, how does it  work - do they first start with your records - if you doctor makes the recommendation?  Or do you always need to go?

I'm guessing this can get to be quite expensive.  We also have a 16 year old son at home.

Need to decide fast- the doctor thinks 2-3 weeks tops before getting started.  The alternative to surgery would be chemo - maybe rads.  For that part - I think well stay local at Siteman.

 

 

Rommotu
Posts: 4
Joined: Dec 2013

Try mayo in rochester , mn they are known for favoring surgery as a definitive treatment (more so than sloan or md anderson) and as such, have some of the best surgeons and techniques in the country . Also, they are extremely efficient so i don't think you'll have a problem getting them to review your case quickly. Good luck and god's speed...

phrannie51's picture
phrannie51
Posts: 3985
Joined: Mar 2012

I contacted the Cancer Center in our hospital, and they put me in contact with a nurse who is the coordinator for gathering the stuff to get the paperwork together, the CD's of the scans....everything that needed to be sent to MD Anderson.  All I had to do was sign a bunch of medical releases so she was legal to pick the stuff up from the various doctors.  You maybe able to find such a person within the Oncology office, too....I had already got the second opinion stuff off before I ever went to my Onc.

If I'd have wanted to get two second opinions.....like say I wanted another set of stuff sent to Mayo, she would have had two batches of stuff made up to send.  You don't have to go anywhere until they look the stuff over, and decide what they can do....

p

donfoo's picture
donfoo
Posts: 1400
Joined: Dec 2012

Here is the list

katenorwood
Posts: 1879
Joined: May 2012

Hey there !

Do you have a nurse cooridinator working with you at your clinic ?  Alot of people don't realize that they can get a second opinion from the comfort of their own home.  Seriously !  You need to decide who you would like to go with first.  Many onc's, surgeons, specialists will give you a second opinion without actually going into them.  You just have to know how to connect with them.  You already have all of your test results and opinions.  Now it's to send them off to a specialist willing to do this.  Ask your onc. nurse, or ask for the nurse cooridinator.  Yes, there is alot of paper work and faxing....but your clinic and hospital does most of this for you.  Have a heart to heart with your most familiar doctor, the one you click with the most.  I also tell people to go with the second opinion with the most experienced doctor who has plenty of knowledge with your dx.  Good luck, and let us know what you decide to do.  Hugs sent !  Katie

patricke's picture
patricke
Posts: 494
Joined: Aug 2006

Hi Lorna, if possible, I recommend getting a second opinion from Mark Urken, MD, an ENT, head and neck surgeon, who works out of Beth Isral in NYC.  He is one of the best in the world, and specializes in head and neck reconstructive work which he does every day as regularly as he eats breakfast.  You can check his website for more information.  He is the guy who rebuilt my esophagus in 2011, and recently patched a gaping fistula where my voice prosthesis used to be.   If you are interested and would like contact information, or have any questions that I might be able to answer, please feel free to e-mail me.

PATRICK 

fishmanpa's picture
fishmanpa
Posts: 1155
Joined: Jan 2013

From the moment I contacted them, they were nothing short of spectacular. Not to mention #1 in H&N cancer.

"T"

hwt's picture
hwt
Posts: 2125
Joined: Jun 2012

You know I am a big supporter of Mayo but looks like Patrick has had first hand experience with a like situation. Personally, I gathered all of my own discs and records from Barnes and sent them Fed Ex to the people I had made contact with at Mayo and MDAnderson. If you do opt for Rochester, message me and I will be happy to recommend where we stayed. One problem with Rochester, this time of year, is weather you can't count on.   I start my chemo at Siteman (West) Thursday. By chance, is the ENT surgeon they are consulting with, at Barnes, Nussenbaum? I was leaving the BJC system but Mayo recommended Dr Atkins for the chemo so I decided to stay. 

sabriene
Posts: 28
Joined: Aug 2006

I happen to see you are at Barnes.  I just happen to have had a doctor here to see me for a vistit from Jacksonville, Florida.  He had been in practice there many years. Was telling me he had many patience with similar problems like we all are dealing with now.  I found this interesting for his opinion from sending patiences over the year to different cancer center that Mayo's, Barnes and MD Anderson were at the top of the list and himself would go to Barnes.  His patiences were all very happy with Barnes in St. Louis. 

I am guessing you may be from that area and wondering if you happen to no a very good oral surgeon with Barnes. 

Hoping you a speedy recovery with your treatments and sure your in good hands with Dr. Atkins.  Roger

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