OT: Oncologist referral needed

[knight_ru]

Good evening fellow RU faithful -

So, I am in need of a oncologist who has experience with Ewing Sarcoma. Even though this usually affects children/teens, my mother received this diagnosis (though the report was not 100% certain as it could be a similar cancer type).

Any names/suggestions are most welcome.

Thanks in advance.

 

[DJ Spanky]

I can't refer you to a specific oncologist, but I highly recommend you contact Sloan Kettering.

 

[otter97]

Good evening fellow RU faithful -

So, I am in need of a oncologist who has experience with Ewing Sarcoma. Even though this usually affects children/teens, my mother received this diagnosis (though the report was not 100% certain as it could be a similar cancer type).

Any names/suggestions are most welcome.

Thanks in advance.

Sorry to hear you need this Knight_ru.
Id recommend Dr Joseph Lane at HSS/Cornell. (thats in the UES in manhattan)

1. 
   Joseph M. Lane, MD
   Orthopedic Surgeon · Manhattan
   Address: 475 East 72nd Street, New York, NY 10021
   Phone:(212) 606-1172

 

[RutgersUnion]

I can't refer you to a specific oncologist, but I highly recommend you contact Sloan Kettering.

Seconded. My father and my mother were both at MSKCC and its not just about the treatment its about the care. We initially brought my mother to Beth Israel and although the treatment was to be almost a identical we quickly realized there is nowhere like MSKCC and switched.

 

[mildone]

I don't have specific oncologist names, and this is not a recommendation specific to any particular form of cancer. But my family's experience with Memorial Sloan Kettering Cancer Center along with their hospital in NYC (and their satellite facility in Basking Ridge) was so positive in every conceivable way that if you can find a specialist affiliated with them, I strongly recommend you go there.

Over the course of several years of frequent visits to five different MSK facilities (4 in NYC, 1 in Basking Ridge), we never once experienced anything less than outstanding care. The organization is astonishingly well organized and efficient. Everyone from the custodial staff at the hospital to all the technicians, nurses, doctors, surgeons and researchers we dealt with were beyond professional. They were all, by far, the best any of us had every seen at any medical facility. And it wasn't even remotely close.

And no, I don't work for them. They were simply that good. They clearly work very hard at being the best at what they do.

Best of luck with your mom.

 

[Knight Shift]

Another recommendation for Memorial Sloan Kettering. Teaching and research hospital. I was originally told my right kidney would have to be removed along with a tumor in a difficult location. The urologist/oncologist at Sloan Kettering, who had performed well over 1000 partial nephrectomies, preserved 95% of my right kidney. He also was adamant about doing an open surgery versus the very popular laparoscopic surgery. I got the impression that they have encountered every type of situation, and with the combination of surgeons, oncologists, research and professors, they can tackle any problem.

 

[JPhoboken]

Memorial Sloan Kettering, NYC. Personal experience. Top notch, organized, every kind of doctor you might possibly need.

 

[Knight Shift]

I should also add that every aspect of my care was delivered with compassion and excellence. On line patient portal allows me to check scans and results. Calls and e-mails to doctor's staff are promptly answered. The billing department was instrumental in navigating the mess my insurance company created.

 

[mildone]

I'm not the least bit surprised to find the, so far universal, love for MSK. Maybe we just were lucky, but there were moments when the experience was so unbelievably good that it was surreal. Almost Twilight-Zone-esque.

I remember one time at the hospital in NYC when my dad asked me for something (I forget exactly what it was). There was a guy in the room collecting trash at the time. The guy said he would take care of it, put down the trash, took off his gloves, washed his hands like a surgeon getting ready for surgery (which blew my mind) and then hustled off and came back with whatever it was my dad wanted.

And there were lots of examples of that kind of care. Everybody was helpful. Everybody was cheerful. Everybody was compassionate.

 

[LevaosLectures]

MSKCC has an Australian geneticist who is a stone cold fox. Angela Arnold. Also shes a freaking genius. And nice. I wish I had another reason to get genetic cancer testing. Apropos of nothing just throwing it out there.

 

[Unionst]

Good evening fellow RU faithful -

So, I am in need of a oncologist who has experience with Ewing Sarcoma. Even though this usually affects children/teens, my mother received this diagnosis (though the report was not 100% certain as it could be a similar cancer type).

Any names/suggestions are most welcome.

Thanks in advance.

Sloan. This is one reason to live in the NJ/NY area, the best medical care is available and Slaon is the best.
I echo everything everyone has said about the care they provide. I will add that as a statistically minded person I am regularly amazed at how poorly doctors can have a handle on data. Not at Sloan. Their treatment option recommendations are very much data based and are well explained. The Basking Ridge facility is wonderful as is NY. We are so thankful we used them.

 

[PRH_RU]

I have seen and heard very good things about Duke as well.

 

[Knight Shift]

And on Ewing Sarcoma and MSKCC:
https://www.mskcc.org/pediatrics/cancer-care/types/ewing-sarcoma
Casey DA, Wexler LH, Merchant MS, Chou AJ, Merola PR, Price AP, Meyers PA. Irinotecan and temozolomide for Ewing sarcoma: the Memorial Sloan Kettering experience. Pediatr Blood Cancer. 2009 Dec;53(6):1029-34.


Leonard H. Wexler:
https://www.mskcc.org/cancer-care/doctors/leonard-wexler

Paul A. Meyers:
https://www.mskcc.org/cancer-care/doctors/paul-meyers

Alexander Chou
https://www.mskcc.org/cancer-care/doctors/alexander-chou

 

[RU205]

Do you live in NJ? If you live in NJ or NY go to MSKCC.

 

[bethlehemfan]

Yes to Sloan!

 

[Knight Shift]

One other thing if the OP lives in NJ. You have to make sure your health plan will allow you to get treatment in NYC if you live in NJ. Oddly, doing diagnostic testing, etc. at Basking Ridge was not a problem. However, my surgery last year almost got derailed when my health insurance company told me late in the schedule that my plan would not cover surgery in NYC. And I don't think they do surgery in Basking Ridge. I pushed back on the insurance company and convinced them that I had a unique situation that could only be handled by a skilled surgeon at MSKCC. But that whole episode with the health insurance fight was more stressful than being diagnosed with cancer. It all worked out, the surgery was a success, and so far, my scans are clear, and I have never felt better in my life. In addition to being a leader in his profession, my doctor was one of the funniest, warm and most empathetic medical professionals I ever met. I remember in my visits with him pre-surgery laughing out loud with him about various things. I am a big believer that laughter can be the best medicine, and thinking positively about all aspects of life always helps.

 

[RUMBA-JK]

Certainly there are many reasons to consider MSK - not the least of which is the history of experience -

Ewing’s sarcoma (ES) was first described by James Ewing in 1921 as a "diffuse endothelioma of bone" (Ewing 1921). He observed that this highly aggressive bone cancer was remarkably sensitive to radiation therapy.

Among other things, Dr. Ewing "laid the foundations of what is now known as the Memorial Sloan-Kettering Cancer Centre, building up a strong team of physicians who later distinguished themselves in the various specialties of oncology. His reputation was widespread; his peers referred to him as 'The Chief' and 'Mr. Cancer'."
http://sarcomahelp.org/ewings-sarcoma.html#tpm1_1

probably step one is confirmation of diagnosis

certainly hope for the very best outcome for your mom

 

[rutgersal]

I asked my friend, who is a pediatric neuro-oncologist at Memorial Sloan Kettering. He said that he didn't know anyone on the adult side as he works with children only, but that it didn't matter since they worked in teams and that all patients benefited from the collective group.

He informed that the proper procedure is to first contact Memorial Sloan Ketterings patient referral service at 800-525-2225. If you have a problem getting an appointment, he'll be happy to help.

He also suggested visiting the following website.

https://www.mskcc.org/experience/become-patient


Good Luck and I wish your mom a speedy recovery.

 

[Andy117]

My wife is an oncology nurse at Hackensack Medical Center, I can get you names there if you'd like.

 

[knight_ru]

Thanks all for the replies and well wishes.

@Andy117 - yes, that would be great. email is knight_ru (at) excite.com if you want to forward names along.

 

[knight_ru]

One follow up question ... Does anyone have a good referral for an insurance agent who deals with Medicare Part F supplemental plans? (Preferably in north jersey).

Thanks again for th suggestions and well wishes.