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Cancer centers

Hana2017
Posts: 3
Joined: Nov 2017

Hi Everyone,

 

My wife was recently diagnosed with adenocarcinoma with unknown primary. The doctors suspected the primary was in her small intestine. She is about to receive her third chemo. There are still a lot of open questions.We are  looking for a cancer center where there are more specialists for treating cancer with unknown primary.   After searching online, the best treatment option is immunotherapy, anyone who knows this type of treatment? Anyone has any experience with MD Anderson in Houston and Dana-Farber in Boston? I hope someone on this site who may provide some information and directions.

Peter

 

 

Woodytele
Posts: 163
Joined: Apr 2017

I currently go to Dana Farber in Boston.  They are highly specialized in all Cancers, I would recommend highly. 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I used a local hospital and radiation center for Neo-Adjuvant treatment but got second opinions from Dana Farber and Brigham and Women's Hospital in Boston. I had the surgery done at Brigham and Women's on October 30 and will meet with an Oncologist at Dana Farber this week to discuss Adjuvant chemotherapy. Dana Farber does Oncology and Radiation (I think) and their patients have surgery and in-patient stays at Brigham and Women's Hospital which is next door.

Dana Farber is highly specialized. My local oncologist covers all of the cancers (I think). The Oncologist that I'm seeing this week specializes in Colorectal Cancer. So he will know a lot more about my type of cancer including clinical trials information. But Dana Farber is a high-volume place. The number of cancer patients that they treat is unreal and their patient intake system is designed to maximize the time of their most important staff. So it can feel like it's pretty hard to make your first appointments for tests and to see an oncologist and that's the problem that I had the most trouble with. I think that it took about two weeks to get an appointment scheduled wher I could just walk into my local hospital to be seen the next day by an oncologist.

You really need to find out what kind of cancer your wife has in order to talk about treatments. Immunotherapy targets cancers where there's a marker on the cell surface and uses the body's own immune system to attack the tumor cells. The cancer that I have is inside the cell so it wouldn't be responsive to current Immunotherapy drugs. For Colorectal Cancer, a biopsy would be sent to a lab to analyze it and if Lynch Syndrome is indicated, then Keytruda, an Immunotherapy drug approved this past spring and the "Jimmy Carter drug" could be used to fight the cancer. But that's getting ahead of things.

So my experience with Dana Farber has been good in that they've given me second opinions which worked out with treatment even though I used local services for treatment. Their surgeon (DFCI/B&W) was excellent as she's Board Certified and an expert in this area. There's a lot of distance between Boston and Houston and there are excellent hospitals in many parts of the country. You would likely need to make several visits for appointments and tests so you could consider top hospitals closer to where you live. I do know that there are people that travel from various parts of the world to get treated for cancer in Boston (at Mass General Hospital and Brigham and Women's) but it usually involves staying here for a while and that can be challenging.

Top 20 cancer hospitals from Medcape in 2016.

  1. University of Texas MD Anderson Cancer Center, Houston

  2. Memorial Sloan Kettering Cancer Center, New York City

  3. Mayo Clinic, Rochester, Minnesota

  4. Dana-Farber/Brigham and Women's Cancer Center, Boston

  5. UCLA Medical Center, Los Angeles

  6. Moffitt Cancer Center and Research Institute, Tampa, Florida

  7. Seattle Cancer Care Alliance/University of Washington Medical Center

  8. Cleveland Clinic

  9. Johns Hopkins Hospital, Baltimore

  10. UCSF Medical Center, San Francisco

  11. Massachusetts General Hospital, Boston

  12. Hospitals of the University of Pennsylvania-Penn Presbyterian, Philadelphia

  13. Stanford Health Care-Stanford Hospital, California

  14. Northwestern Memorial Hospital, Chicago

  15. Barnes-Jewish Hospital/Washington University, St Louis

  16. University of North Carolina Hospitals, Chapel Hill

  17. New York–Presbyterian University Hospital of Columbia and Cornell, New York City

  18. USC Norris Cancer Hospital-Keck Medical Center of USC, Los Angeles

  19. Wake Forest Baptist Medical Center, Winston-Salem, North Carolina

  20. City of Hope, Duarte, California

 Individual rankings for Colorectal Cancer are somewhat different. This ranking is for cancer in general.

Hana2017
Posts: 3
Joined: Nov 2017

Woodytele and Mikenh,

Thank you both.

We are experiencing similar things in dealing with the hosptal admin. Given my wife was diagnosed as unknown primary, a few extra steps (time) were required. Explanation on immunotherapy is helpful. Appreciated.

 

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

I posted this recently in another post.  MikeNH covered a ton of it, but just in case this on second opinions

Not sure where you live, but it is always a good idea to go for a second opinion if possible.  Put your questions and concerns together.  Ask ANYTHING that pops into your head.  Get comfortable.  (I am going for a remote second opinion at Mass General right now, Cleveland Clinic and Dana Farber also have these available, as do some others.  MD Anderson will do it also.  They are a bit more complicated.  And in some cases you need to fly down for 3-5 days.  But to put your mind at ease, could be worth it.)  Mass General is $850 for remote second opinion.  It takes about two weeks to get a second opinion.  (Mass is Top 15 cancer hospital, #11, in rankings.  MD Anderson is #1, MSK is #2, Dana Farber is 3 or 4 I think.)  Heck, start it now.  (Not sure where you are located)

Hana2017
Posts: 3
Joined: Nov 2017

Thank you for your suggestion. I will look into those options.

dancer2
Posts: 49
Joined: Jul 2016

What is a  remote second opinion?

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

You send all of your files, reports, etc to a facility for a review and possible other costs of treatment.  Cleveland Clinic, Mass General, Dana Farber and some others have people who get gather the information for you and send it on.  The costs of these vary, with some complicated cases perhaps costing more, but Cleveland Clinic and Mass General about $850, Dana Farber $2,000. 

MD Anderson was a bit more difficult  The first person was great and easy to deal with, but kept on going around in circles with the second person I spoke to.  Was going to write a bit more about it, but it was enough for me to look elsewhere for the time being.  (And I am looking for a second because I was told I am inoperable)

dancer2
Posts: 49
Joined: Jul 2016

Thanks for replying. Suppose the next time I call I should ask if sending the latest records will be charged for?

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

Mass General and Dana Farber (maybe others) use Grand Rounds, thrid party place that helps.  Mass General seems to be "all-in" at $850 right now so far.  I spoke with someone at Grand Rounds after I started process.  Told them where all the documents were, names of doctors, list of scans and they have done the rest.  Sometimes they may need more help, but if you have a list of doctors and reports, it is pretty quick.  I had mine pretty easy to look up via Memorial Sloan Kettering portal and the one or two other doctors leading up to the diagnosis.

Mass General link

 

http://www.massgeneral.org/second-opinions/

 

Dana Farber

 

http://www.dana-farber.org/appointments-and-second-opinions/online-second-opinion-program/

 

Cleveland Clinic

 

https://my.clevelandclinic.org/online-services/myconsult

 

 

dancer2
Posts: 49
Joined: Jul 2016

What is a  remote second opinion?

Didn't finish.  I need one and have called Stanfords Cancer center but have not followed through yet as I have not seen my oncologist for over a month tho go for the treatment which has boiled down to erbitux only to see if the neuropathy gets any better and this has gone on for three or four bi monthly treatments but have an appt with her this week...she was kind enough to give me the 'maintenance' that the place i went to in LA was going to give only i could not keep up the trips. Never heard from them once i left......I am after another opinion but from a top center....UCLA would be the closest to me here in nevada. Anyone here been there? A gentleman poster ( hope u post) goes to Stanford and has received great care and that is why I called them...but if there are great specialists at UCLA I would have a place to stay.........so would appreciate comments also..........I do not as yet have primary care doc, only because I never got sick and now have not a clue as to whom to go to. Are they crucial in our conditions? Do they help us move through this journey? As I have been on my own in all of this and sometimes quite frankly get overwhelmed as to what to do next. I'd like to get ned but have not come close yet in these last two years, just 'stable'...........am after surgery. thanks everyone!

ReeRee2's picture
ReeRee2
Posts: 39
Joined: Oct 2017

i am going to UT Southwestern in Dallas but I see I.t. is not part of the top 20. I have been thinking about going tonMD Anderson for 2nd opinio. I have stage 3 colon cancer and have taken 3 rounds of chemo.

Any thoughts?

abrub's picture
abrub
Posts: 2097
Joined: Mar 2010

I'd go there.

danker
Posts: 1188
Joined: Apr 2012

Ask MDA for a second opinion!

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

Is one of the best and I planned on using their remote second opinion.  But it turned into an absolute nightmare for me when dealing with some people there.  Really annoying and I gave up.  Could not get a straight answer at all about scheduling and other basic things.  The first person was awesome.  The next person made me want to shoot myself with an absolute brutal hour conversation going around in circles.  

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