How to get a second opinion for treatment options?


My brother Eric has synovial sarcoma. He's had numerous rounds of radiotherapy and chemo. The last two cycles of chemo were at the University of Michigan. All treatments have failed to reduce his three tumors. His oncologist is trying to get him into a clinical trial at NIH, but the approval process to get into the trial is slow and puzzling. (We don't get much information from our oncologist because NIH isn't very open about their research, apparently.)

His oncologist is stressing that he do more chemo, but he is apprehensive because the previous rounds of chemo were either ineffective or harmful (the last round put him in the ICU for several days). He refuses to do more chemo unless a second doctor from another hospital confidently recommends it. He really wants a second opinion.

We've asked the oncologist for other doctors to contact but they haven't been very forthcoming in that information and we're getting impatient.

So, how do I go about looking for a second opinion? What are some other sarcoma clinics that I could contact? We live in Ann Arbor, MI now so it would be great to find something nearby or in the midwest. We could travel further than that but my brother is weak and probably wouldn't travel well.

Thanks in advance for your feedback.


You can contact the Mayo clinic or Sloan Kettering yourself. See if your insurance covers a second opinion. You can get written second opinions. You don't need approval of your doctor, but it would be sure nice if the doctor can work with you. All you need is copies of the latest scans. They most likely will ask for a sample of the tumor if anything has been removed before. So far everyone has been really helpful to us when you call other hospitals. Hang in there!!


Here is a discussion where members recommended their specialists:


Also the Sarcoma Alliance has a map of sarcoma centers if you want to pick a center close to you:


Don't expect your brother's current oncologist to help you with second opinions. Oncologists are usually too busy and have other priorities. Just pick a place, make a call and they will tell you what you need to bring. Do get a second opinion, even a third if you're still not comfortable with the treatment plan.


Im so sorry to hear that news. I believe your hospital has a sarcoma tumor board. you contact them and ask for them to review your file. This is a cool thing because its a board fo specialist that all look over your brothers file and collectively can give you an opinion... its hard to explain but its always an extra thing...you can also call fr and ask them if they would review the file for a second opinion. Synovial sarcoma is so rare, its hard to find a specialist but it is very important to get one that is familiar with it... Ive heard of mayo, sloan ketttering and one in texas the name escapes me right now as being excellent hospitals, however, every single case is different and don't give up on yours :) BUT DEF get a second opinion. any doctor that tells you that you don't need one... is not a great dr... god bless..


When my 11 month old son was diagnosed with Synovial Sarcoma we were able to get 3 opinions before starting treatment with the help of his PCP (primary care physician). We live in So-Cal so we researched doctors and hospitals in California that dealt with Synovial Sarcoma since nobody at the San Diego Children't Rady's Hospital had ever dealt with this type of sarcoma. Ask your PCP to put in referrals for you to other oncologist for second opinions. Hope this helps!


You have an incredible journey ahead of you. You will be amazed at the amount of support you and your brother will receive from your family, friends, and often strangers including this support group.

I had a large sarcoma removed from my abdomen four months ago. Because I sought a second opinion, I was able to forgo chemo/radiation as the type/make-up of synovial sarcoma was one that did not respond to chemo. As you work with the doctors, be sure to find out the type, grade and stage. Although my tumor was removed with clear margins, the chance of it reoccurring or spreading is high. At that point, chemo/radiation may be necessary.

I strongly encourage you to find a sarcoma center. Such as place can make all of the difference as this cancer is rare and many doctors are not familiar with the treatments.

I also encourage you to stay positive and strong. Fight like a girl. Your brother can beat this. Another thing, advice given to me by a cancer survivor has proven to help me tremendously: Find a blessing every day. You'll be surprised how that simple thought improves your positive attitude.


This journey can be frustrating at time but hang in there and do whatever your heart is at ease with. If it is of any help, when I reached out to NIH, everything was done in less than a week. Unfortunately, I did not qualify. Try Amanda at 301-■■■■■■■■



There are two great cancer centers on the Midwest I’d recommend. My oncologist at Northwestern Memorial Lurie Cancer Center in Chicago is excellent. I recently had surgery to remove my lung which was filled with sarcoma at The Ryan Cancer Center at Ohio state university. I was incredibly impressed by that cancer center. The sarcoma surgeon came from MD Anderson in Texas after 31 years of service. The oncology/radiology/surgery team is phenomenal. So those are two options I can personally highly recommend of you want to change who you work with.


Dr. O’ Rourke is my boyfriends oncologist in Grand Rapids. He’s done very well and is very respected. His treatments have included chemo and radiation. The response has been favorable. He is now at Mayo to be evaluated for a clinical trial.


Just wondering, is surgery not an option?


If you were referring to me…no, surgery isn’t an option at this point.