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Treatment in the US?


#1

I've sent my case over to my cousin in San Diego and he showed it to an oncologist there. He referred us to Memorial Sloan Kettering Hospital in New York, which has one of the best cancer and soft-tissue sarcoma research centers in the world. The recommended options they gave me there are much different than at the hospital I am being treated at.

Link to my previous discussion (read it to see my story/treatment options): http://www.synovialsarcomasurvivors.org/forum/topics/too-many-decisions-which-is-the-right-one

I've now been recommended to do induction chemotherapy (most likely ifosfamide + some other chemo drug), then have the base of my tumor removed (guided with an MRI), then another surgery to remove the spots in my lungs, and then continue with chemotherapy in hopes of keeping me in remission.

My problem with being treated in America is that I was told that chemotherapy is given with almost every cancer there because the doctors are paid more with the more chemo they give, even if it isn't effective for the specific type of cancer. Here in Canada, no matter what treatment you're given, doctor's salaries don't change. What do you guys think? Should I go ahead with these new options? Or should I stick with my treatment here? And what's treatment like in America? Thanks in advance, and good luck to all of you.


#2

I receive treatment at the Dana-Farber Cancer Institute in Boston, MA and have found it to be absolutely incredible. They are affiliated w/ Harvard Medical School and have an entire floor dedicated just to Bone and Soft Tissue Sarcomas.

As far as worrying about doctors giving medications just to boost their income, I don't give a whole lot of thought to these claims. I've grown up in the US and you hear these types of rumors sometimes but our doctors still go through extensive schooling and are held to highest standards when it comes to ethics. I can't imagine doctors giving drugs just for the sake of lining their pockets at the expense of the patients health. I believe that most cancer patients end up taking chemotherapy in the long run b/c it's been proven highly effective in many cancer cases.

I'd advise you not to put much faith in these claims and instead do your own research into types of treatments given for the type of cancer that you have. You are also not obligated to accept every medication that your doctor recommends although I'd encourage you to ask as many questions as possible if you have hesitations! When I was hospitalized last year I think I drove my nurses crazy b/c I asked them what every single pill was that they were bringing in but you don't know if you don't ask!

I've heard excellent things about Sloan Kettering so I wish you the best of luck and recommend that you at least give them a chance. Don't ever hesitate to bring up your concerns to the doctors themselves. I'm sure they've heard everything!


#3

I'm a patient at Memorial Sloan Kettering cancer center, they are wonderful, don't believe the rumors about doctors giving you chemo or any other treatment so they can make more money. Do your own research and ask alot of questions. The doctors and staff there will be more then happy to answer your questions and help you. I've been a patient there since 2007, I fly in to NYC from Florida.


#4

Thank you both for your advice. Sally, are they good in treating synovial sarcoma? What have you done for treatment? Please let me know.


#5

Hi Sarah,

I had my treatment at NYU with Dr. Rosen. I would definitely recommend them to you. He is one of the most experienced sarcoma specialists out there and definitely knows his stuff. He does chemo and was actually the one that pioneered it's use in treating sarcoma. It definitely is not a situation where you just use chemo for a higher bill, chemo is very effective in fighting this cancer and you should definitely do everything you can to maximize your life!

Feel free to check out my blog if you want to see what my treatment was like with them. Start way back at the beginning though! http://survivingsarcoma.com.

If you have any questions, definitely don't hesitate to ask!

Rob


#6

They are Very good, I've been a patient since 2007, in 2007 I had chemo, Adriamycin and Ifosfamide. I had 4 rounds of this cocktail, this eliminated the caking in my omentum wall(metastasy) and shrunk the mas from 9.6cm to 5.7cm. At that point I was able to have surgery. In 2010 I had a recurrance in my left lung it was small 0.07cm it was removed with a wedge resection and then I had another recurrance one year later Dec. 2011 this time it was bigger, in my left lung again, bi-lobial, one was 3.3cm and the other 3.1cm. This time chemo first, Ifosfamide and Etopiside 2 rounds but when I had a scan done it looked like chemo was not working at that point my thoracic surgeon(Dr. Manjit Bains) recommended surgery. I again was able to have wedge resection. I was told the chemo is recommended first to help clear the area of cancer. I just had my 3 month follow up CT-scan and it came back cancer free. I just pray the next one on August come out the same.

Sarah said:

Thank you both for your advice. Sally, are they good in treating synovial sarcoma? What have you done for treatment? Please let me know.


#7

Memorial Sloan Kettering is an awesome hospital, one of my best friends works there!


#8

I visited with Dr. Singer at Memorial Sloan Kettering hospital. He's fantastic. Ultimately, I opted for the team at UCLA because they were closer, and the team was also highly qualified. My surgeon, Dr. Fritz Eilber, did his Fellowship with Memorial Sloan Kettering. My medical oncologist, Dr. Tap, transferred from UCLA to Memorial Sloan Kettering soon after he set up my chemo regimen.

I did adriamycin/ifosfamide/mesna for 5 cycles, plus ifosfamide/mesna for 1 cycle.

Then I did 28 rounds of radiation.

Then I had surgery to remove the tumor.

Then I did 9 more rounds of radiation.

Now I'm doing 6 rounds of Gemzar and Taxotere as a precaution, in case there are any little cancer cells floating around.

I just got clear scans last week, so as of July 2, I'll be in remission for 7 months!


#9

Dr. Samuel Singer is fantastic he did my first surgery in Nov of 2007 and he still does my follow up visits with my oncologist Dr. Mary L. Keohan every 3 months. Dr. Manjit Bains is my thorastic surgeon I see him if there's a problem with my lungs. Seeing and talking to the doctors at Sloan Kettering can only help you.


#10

Thanks for sharing Sarah!


#11

Getting a second opinion from the US can't hurt but getting the whole treatment there could be quite expensive :-(