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12 year old daughter just got diagnosed


#1

Hi all,
My daughter just got diagnosed with a large 5cmx8cm synovial sarcoma tumor on her upper thigh. Docs want to do chemo radiation and surgery We are in Chicago at Rush University. We are getting a second opinion at university of Chicago. We would be willing to travel. I am looking for the best synovial sarcoma team.
Also, we are terrified of radiation. The doctor told us her bowels, bladder, kidneys, growth plates and kidneys would all be affected.
We would love any and all advice on anything!
Thank you


#2

Hi
This looks like my tumor but smaller. Do not think about radiation now start with chemotherapy as I did. It may shrink enough to be removed with surgery without the need of radiotherapy. My tumor shrunk about 40% and they remove it 4 days ago. I’m now in the hospital and I start physiotherapy today. Hopefully I will not lose much of my leg function. Find a good oncologist and a good surgeon too. God bless you.


#3

Also look at Dr. Richard Lackman University of Pennsylvania, he has been treating this type of cancer for thirty years. He treated my sarcoma now 29 years ago. Mine was in my wrist and he saved almost all my function.


#4

Hi Shawn,

I'm Pascal from Paris (France). I pray for your daughter and for you.

By experience, if I could give only one advice : go fast and decide quickly, this fucking cancer is faster than any other.

My son passed away because he has neglected to signal to his GP he has a small ball uper his tigh.

I don't want to make you creazy but sometimes it is a question of days.

Keep in, touch

Love and hope

Pascal


#5

Children with synovial sarcoma are treated somewhat differently than adults. I hope other parents here can recommend pediatric specialists. Closest to you is probably this one:

http://cancer.northwestern.edu/public/why_northwestern/search_physician/physician_info.cfm?ID=251&LastName=Walterhouse

I assume you also have to worry about her reproductive system if the bowels, bladder, kidneys and growth plates are affected :-(


#6

Hi Shawn. My son was treated for SS in his arm just around his 20th birthday and 6 years later is doing fine. We were very happy with his treatment at Dana Farber Cancer Institute in Boston, which has a dedicated sarcoma department. We actually didn't bother getting a second opinion because when we mentioned this to our DFCI team, they told us the place to go for a second opinion was Mass General (also a great hospital here), where many of the DFCI doctors had trained; and we were told that Mass General would give us a different opinion. Our DFCI team then walked us through the pros and cons of every treatment option, describing why they leaned one way and Mass General leaned another way, but really without trying to influence our choice. I'm not saying that you shouldn't get a second opinion at U. of Chicago -- what I do advise is that you yourselves understand all those pros and cons and ask the doctors for the reasons why they're leaning one way or the other.

If you're willing to travel, I would recommend contacting DFCI's Sarcoma center, or the sarcoma team at New York's Memorial Sloan Kettering -- though bearing in mind that you don't want to delay things.

If you've been warned of all these bad effects of radiation, then I would recommend that you look into what sort of radiation the Rush doctors plan to use. Check out this page from Memorial's website: https://www.mskcc.org/cancer-care/types/soft-tissue-sarcoma/treatment/radiation-therapy.

Don't listen too much to laypeople who don't know your situation -- like me and everyone else on this website. Every cancer is different. For instance, another poster here recommends chemo first; in my son's case, the recommendation was radiation only and not chemo at all. It really varies from person to person, cancer to cancer. The one thing that is constant is that you need to know as much as you can, and ask the questions that really matter.

I will also pass along a tip about speeding things up. I work in a profession where networking and "who you know" matters. So when my son was Dx'ed and the hospital was taking a while to set up appointments, I sent an e-blast to everyone I knew who might possibly have a connection to the hospital: leaders in my faith community; a very wealthy friend whose family donates to the hospital; people who have some political connections....Look for people with money who are likely to be donors. As it turned out, it was a "friend" connection rather than a "money" connection that worked for us -- someone who was on my eblast list was very good friends with a doctor on the team, and appointments were immediately set up for my son.


#7

Hi Shawn. My son was treated for SS in his arm just around his 20th birthday and 6 years later is doing fine. We were very happy with his treatment at Dana Farber Cancer Institute in Boston, which has a dedicated sarcoma department. We actually didn't bother getting a second opinion because when we mentioned this to our DFCI team, they told us the place to go for a second opinion was Mass General (also a great hospital here), where many of the DFCI doctors had trained; and we were told that Mass General would give us a different opinion. Our DFCI team then walked us through the pros and cons of every treatment option, describing why they leaned one way and Mass General leaned another way, but really without trying to influence our choice. I'm not saying that you shouldn't get a second opinion at U. of Chicago -- what I do advise is that you yourselves understand all those pros and cons and ask the doctors for the reasons why they're leaning one way or the other.

If you're willing to travel, I would recommend contacting DFCI's Sarcoma center, or the sarcoma team at New York's Memorial Sloan Kettering -- though bearing in mind that you don't want to delay things.

If you've been warned of all these bad effects of radiation, then I would recommend that you look into what sort of radiation the Rush doctors plan to use. Check out this page from Memorial's website: https://www.mskcc.org/cancer-care/types/soft-tissue-sarcoma/treatme....

Don't listen too much to laypeople who don't know your situation -- like me and everyone else on this website. Every cancer is different. For instance, another poster here recommends chemo first; in my son's case, the recommendation was radiation only and not chemo at all. It really varies from person to person, cancer to cancer. The one thing that is constant is that you need to know as much as you can, and ask the questions that really matter.

I will also pass along a tip about speeding things up. I work in a profession where networking and "who you know" matters. So when my son was Dx'ed and the hospital was taking a while to set up appointments, I sent an e-blast to everyone I knew who might possibly have a connection to the hospital: leaders in my faith community; a very wealthy friend whose family donates to the hospital; people who have some political connections....Look for people with money who are likely to be donors. As it turned out, it was a "friend" connection rather than a "money" connection that worked for us -- someone who was on my eblast list was very good friends with a doctor on the team, and appointments were immediately set up for my son.


#8

You may want to read this article:

http://www.ncbi.nlm.nih.gov/books/NBK65904/


#9

According to a presentation I saw at a Sarcoma Conference, pediatric sarcoma specialists all know each other and work in a more coordinated way than adult specialists. For example, there is the Children's oncology group to coordinate research and trials:

https://childrensoncologygroup.org/

Protocols used by different specialists are much more likely to be identical...


#10

Hi, my daughter was diagnosed at age 13, her synovial sarcoma started in her left upper thigh also. She had chemo l, radiation, and partial hip and femur replacement in the beginning of her treatment. We went to Hershey children’s hospital in Hershey, PA, also St. Jude in Memphis. Have your doctors contact Dr. Navid at St. Jude. The best chemo she was in was Pazaponib that worked for her. Please contact me for more information if you would like. I’d love to help you.


#11

Hi Shawn, I had a surgical excision of a synovial sarcoma in my R ankle at University of Chicago in Feb 2014. I had 33 rounds of radiation therapy at the University of Chicago Comprehensive Cancer Center in New Lenox. I was extremely pleased with my radiation oncologist and his team at their cancer center. I was told my only options for radiation therapy was either the U of C main hospital or this satellite Comprehensive Cancer Center due to it being a sarcoma and the difficulty in accessing the sarcoma site as mine had a tail that wrapped around my tibia. I have never second guessed my radiation oncologist or his staff. Their attention to detail was and still is first rate. However, I have switched my continuing care with my orthopedic oncologist from University of Chicago to Dr Terrance Peabody at Northwestern Memorial. After doing my research into orthopedic oncologists with experience not just in sarcomas but specifically Synovial Sarcoma …his name is who I kept getting. He was at the University of Chicago for most of his career before leaving to join Northwestern. When I told my Doctors at University of Chicago I was going to see Dr Peabody for a second opinion … They were very okay with it when I told them " who" I was seeing. Northwestern is also the only hospital in Chicago that is considered a Sarcoma Center. I know that there is a hospital in St Louis that is a Sarcoma Center and they have a lot of experience with Synovial Sarcoma.
i hope this information helps. I have second guessed myself thru this whole process. Prayers for your daughter.


#12

Thank you all so much! I am trying to
Digest everything. It good to hear advice from people who have been through this thing. Thank you thank you thank you. I’m sure you will be hearing a lot from me.


#13

Hi Shawn,

My daughter had a very large synovial sarcoma tumor on her neck. She went to Memorial Sloan Kettering in NY, they gave her 4 sessions of Chemo and then operated the tumor. The team of doctors at MSK were amazing, they were able to remove everything that was microscopitcally visible to the eye and the best thing, no nerve damage. She will now be taking radiation, but not the normal radiation She will be taking the ProCure Proton therapy, which is percise targeted radiation. Check out this link (https://www.procure.com)... and find out if your doctors offer this type of radiation. Proton therapy can precisely target a tumor, reducing damage to healthy tissue near the tumor and potentially allowing you to receive higher, more effective doses of radiation. There are a few facilities in the US (not in every state), so find out the closest to you.

My prayers are with you and your daughter.... as I went through the same thing and it was not easy. Stay positive and ensure your daughter stays positive, as that will help you both go through the process.


#14

I had a 15cm tumor in the left upper thigh… Operarion was with clean margins… I did not receive radiation as doctors told me the benifits are not clear and it would make the area stiffer. So more side effects and no clear benefits… Radiation in the lungs later also showed that only 2 out of 4 metastases we removed by it so… My thigh remains clear today… And although a nerve was could and muscle removed my ability to walk is not impaired…


#15

15 centimeters? Wow, that was huge. So glad your leg is clear, I hope your lungs clear soon. Thank you for your story.

Acruzin, thank you. Praying for your daughter too!


#16

Also may I ask which proton therapy facility and if it is partnered with Sloan Kettering? I am looking to find a proton therapy that works with a specialized children’s sarcoma place like NY. Thanks


#17

There is a great doctor at northwestern. He was at university of Chicago but moved about 4 years ago. His name is dr. Peabody. He treated my synovial sarcoma 20 years ago. I just saw him again this year for another issue. He is wonderful. I had surgery and radiation and have been clear for 20 years. I had a 3 cm tumor in my knee. Good luck. Let your daughter know that I am living proof that people survive this. Prayers!.


#18

The Proton therapy is partnered with Sloan Kettering. Dr. Lee, who is the radiologist at Sloan Kettering actually recommended and doing the proton therapy due to the precision. We have to take my daughter to NJ to the Proton facility that was closest to NY. They also have a lot of children in this facility. My daughter will be going 5 days wk for 7 weeks. We are very impressed with the facility and they explained the difference between regular radiation, which can easily affect other organs and the Proton therapy. The link I shared has videos and where the facilities are located in the US. Highly recommend you look into this with your doctor. As a mother, I know we always want to do the best possible to give our children quality of life.

Shawn said:

Also may I ask which proton therapy facility and if it is partnered with Sloan Kettering? I am looking to find a proton therapy that works with a specialized children's sarcoma place like NY. Thanks

#19

Twinlip thank you! I need to hear from long term survivors! It’s terrifying to think we are going through all this when it could come back.
Acrizin, we have an appt to see the proton facility about an hour away. I hope we can do it. Thank you.
Chemo starts today…


#20

Shawn, I am so glad you got an appointment with the proton facility, which I believe you will find very high-end how they do their radiation to preserve nerves and other organs. Praying for your daughter... stay strong and positive.