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Frankie


#1

My grandson Frankie is 6 he just turned 6 in April - in December around the holiday his Mom discovered a lump on his leg (thigh area) she brought him to his pediatrician who sent her to a surgeon the surgeon dismissed it as a hematoma told her if it didn’t’t go away in 6/8 was bring him back - she returned to pediatrician they sent her for cat scan she was sent back to the surgeon saw the head of pedis surgery at Stony Brook and they set up surgery - unfortunately surgery was postponed until the end of April but still thinking it was no big deal cause until the surgeon operated to remove this tumor no one including the surgeon ever thought pathology would come back as synovial sarcoma - we are still waiting on scan results so we still have no idea if it’s anywhere else on him … He has a NY State insurance which has denied treatment at Dana Faber so Friday we went to Sloan Kettering for consult - without scan results they have told us more surgery to remove surrounding tissue, port placement, aggressive chemo and radiation. We are all so very confused, overwhelmed, and at such a loss for words…my daughter in law has 3 children from a previous marriage and 2 with my son Frankie who is sick and a 11 month old son. As any parent would be they don’t know what to do where to turn what treatment center to go with without the other children being affected . Any help advice suggestions would be appreciated. Thank you


#2

I understand how scary this diagnosis is for your family. It may help to touch base with St. Jude. They have been helping us with second opinions and they have plenty of experience with synovial ... as I'm sure Sloan Kettering does. It helped our peace of mind to have another hospital confirming treatment for our son, who was 11 at diagnosis. I thought it would be difficult to tell our oncologist that I wanted a second opinion, but he was great and has been so helpful getting scan results and slides to St. Jude. Since this is a rare cancer, finding a hospital with pediatric experience is especially important. We are in the Cincinnati area and go to Cincinnati Children's Hospital. Please keep us up-to-date and ask any other questions you have.


#3

Our recommendations is St. Judes. They never charge any thing. They are equipped with housing for your family. Our son Ben is 7, he was diagnosed when he was 6. His is synovial sarcoma, in his ankle.

We are having him treated nearby. We travel to Charlotte NC. At times we wonder if we shouldn't have went to St. Judes.

You have to get a referral, but they told us it moves pretty quickly. We have sought second opinions, Cancer Treatment Centers of America said St. Judes is the best to go to.

I pray that everything will workout. If you have any questions, you feel free to contact us.

Minion mom


#4

Sloan Kettering is a well-known sarcoma center. This is a good starting place. "Oops" surgeries are quite common unfortunately and most people do have to be operated again no matter what the scan looks like. That's because a surgeon does not remove a benign tumor the same way he removes a malignant one. When the tumor is malignant, he is supposed to remove healthy tissue around the tumor because this healthy looking tissue likely contains malignant cells that will start new tumors. Chemotherapy in children is considered to improve survival. Radiation is used if some of the healthy tissue surrounding the tumor cannot be removed.

You may want to take a look at the following website:

http://sarcomahelp.org/

It has many good information and tips.


#5

I agree with the above comments of st judes. Sloan Kettering I have heard does well too. 2nd opinions are a must and on the pathology I think. They didn’t think that my husbands was anything and removed without biopsy which of course needed a 2nd surgery. They call them oopsie surgeries. Most important is to find a dr that has experience with synovial. In my opinion I would absolutely do a second surgery if they don’t removed it properly the first time they can leave cells behind if this was my son I would absolutely do the 2nd surgery. We did what we thought could give my husband the best chances. A 2nd surgery found some cells left. Then we did i interoptive radiation and 30 sessions after. The radiation during surgery was direct to the site and much stronger then what you get after. he did some freezing as anything to kill the tiny microscopptive cells so they don’t travel. At this point we felt we would do chemo route too to help kill anything that is left so nothing grows. We chose not to amputate. The thing about treatment is it’s a very personal decision when it comes this type of cancer. You will hear two different things from two great drs. I’ve done a ton of research, and have found that all of the success stories I have read so far almost all have done the chemo/radiation. I know of a woman who had a kid that had it in his ankle he amputated did the chemo radiation and is now in his 30s with no problems. I’ve read of a woman who had itin her arm had 6 surgeries and chemo/rad didn’t amputate and is fine too. You are going to read all different kinds of things on the internet and in the end she really has to decide what right for her son based on what stage he is at and where your family is and what quality of life ect . I’d say, wait for those results to see if it has metastasized anywhere else and then consider the options. And it doesn’t metastasize in all patients which is awesome news. They are learning more and more as time goes on and I’ll pray for your family because I know what our family has gone through and this is a great board to be on if you need support too. Please tell your daughter she might feel there are days she can’t make it through but she will. You will all get through this time I’m sure you are still shock. I was for a long time we all understand on here … Id like to share what I think is good news too (I mean of course nothing is good news in this situation but there’s some news that can give you a little more hope ) … Finding it in a limb according to a lot of research is better then other places. Also it’s easier on the body for radiation. God bless you guys


#6

I forgot to add. While I didn’t find out till after cancer treatment of America , while being very expensive does in fact have holistic dr AND medical dr that work together which I think is great. And diet and exercise I fully believe play a very big role in keeping cancer at bay in post care. They have some good successes. We go to Stanford which I’m not a fan of. For a lot of different reasons.


#7

Well I have read , the younger they are the more chance they have, my son George dx in kind 2012 aged 11’ had lower leg amputation , no chemo , it was in his foot and they could go get it out. Have been told in over 50% of cases it comes back within two yrs to the lungs . I don’t regret the decision as have been told this us a particularly nasty aggressive cancer , I wish you luck
And hope xx