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Synovial sarcoma in daughters arm


#1

My 11 y.o. was just diagnosed with synovial sarcoma about 7cm so considered high grade localized as far as we know, we have been given borh options of just radiation or radiation and chemo.
DR’s stats on chemo were only a slightly if any better outcome trying to figure out what to do any advice on here
Thanks


#2

I’m so sorry about ur som. My husband was diagnosed in his right foot 3 years ago. He had it amputated to stop the cancer. There was a very very tiny spot in his lung that his doctors said was to small to test. In January of this year he got really sick and February 24th he went to the er where we found out his cancer is back but terminal and in his lungs. He is currently doing chemo one week on one week on and the third off. It shrank the tumors but now the chemo is hurting his heart and we have to see a cardio oncologist every month. I can only tell you to pick what ur heart is saying. Chemo is rough and it didn’t work on my husbands foot.


#3

Sorry to here about your husband thats just horrible, they have talked to us about amputation as well, far as we know cancer hasn’t spread as of yet, never thought i would find myself in this position as a parent.
The dilemma is just do radiation and if any cancer has spread then we are worse of or do both and put my daughter through chemo possibly for no reason


#4

That’s the hard part. Did they check the lungs


#5

I have a sarcoma in pelvic area, my third. Other two taken out by surgery which is the only recommended treatment. Chemo and radiation not effective. I did have radiation on this latest because the doctor wanted to try and shrink the tumor. He said if he operated, he would also have to take out my bladder. Tumor did shrink but back to the size it was before I started radiation. There is a chemo pill which I will try in the future (votrient). Before that though I am having a CTA scan (veins) to see if there is a vein feeding the tumor and, if so, will probably try embolization to cut off the blood supply to the tumor. You might ask your doctor about both those options. Good luck.


#6

I am sorry to hear about your kid. I know exactly what you are going thru. I had to spend my daughter’s BDAY visiting oncologists a year ago. I wish that God gives you all the energy and helps you, your family thru this process.

The best thing is to remove it with clean margins ASAP. I have seen people do chemo and radiation to try to shrink it to get margins so the surgery is not as bad (specially when it is close to organs you don’t want to loose). Sometimes that works making it smaller making the surgery easier but many times as well it does not do anything but keep it from growing more. The best and only proven cure is to remove the tumor ASAP before it spreads.

I visited around 5 different oncologist and for my daughter case and so far they have not recommended Chemo yet. From what I can tell the Drs usually recommend chemo when the tumor is around 5 cm or larger or is growing in the lungs were it usually spreads first. For me it looks like all the Dr. follow the same instruction manual.

In your case your daughter’s tumor is slightly larger so you have to make a Chemo decision that only you can make. Just have in mind that chemo is not as effective against this type of cancer.

My understanding is that kids do better against the disease than adults. Also God works in mysterious ways. I wish you the best. You are not alone fighting this!


#7

I’ve always had check first, and then surgery. The thinking behind this is that the chemo will clean up cancer cells in the system that have not yet formed tumors. Chemo for synovial is especially brutal, but it’s better to have chemo, do an MRI, then have surgery with clean margins and monitor. If you have surgery and they find more tumors, you’ll need to do chemo anyway, and you will have to wait until the surgical site is completely healed. This costs you valuable time. Do chemo, then rad/surgery or just surgery. Best of luck!


#8

The first sentence in my post should say chemo first, not check first.


#9

I can very much understand your mental situation as im also in a very similar situation. My son 11 yrs have it on his neck diagnosed March 2018. He finished surgery and radiation therapy. Some doctors suggested chemo but we’ve decided not to do that. As its not that proven unless It metastasize to other parts and chemo is a must.
We will do his scan in three months time.
His tumor was 5 cm, surgery done with clear margin.
Still as parents were always worried. Hope God protects.


#10

Hi everyone…I’m sitting in the hospital with my 53 year old husband. He has a 14 cm synovial sarcoma in his chest, lying on top of his lung. It’s shaped like a cucumber. It is mid-grade and regional. He has had 3 chemo blasts- that is where they keep you in the hospital and give you the strongest chemo available for 5 days 24/7 plus meds to protect your organs. It’s brutal. He’s been through 6 weeks of chemo (at the same time). The tumor has shrunk almost 40% and is moving away from his esophagus etc. his surgery is set for the end of this month (July ‘18). The sarcoma specialist said she has only taken one out that is bigger than his and that this man is still alive. Anybody else have any story like his that has a happy ending?


#11

My husbands cancer came back to his lungs earlier this year but the doctors have all said there is really nothing they can do only chemo. I will pray that everything goes well with ur husband.


#12

ask about the drug votrient and embolization. Good luck


#13

Sorry to hear about your child. My son was diagnosed at 9 but is now 11 cancer free. We did surgery, chemi and radiation since the tumor was more than 5 cm. How big is the tumor?


#14

Thank you, Bryce for your inquiry. So glad to hear your young son was healed. I am a 67 y/o female which does not fit any of the profiles for synovial sarcoma. I like to say that "I’m special ". This is my second “rodeo” since 2016. My first surgery was done by a podiatrist unknowing it was a cancer tumor. My GP passed me off with recommendation of taking tylenol and do some prescribed exercises at two different annual wellness visits. Then an orthopedist did an xray of the obvious lump on my ankle, saw nothing and recommended PT. Later we learned from him that he had experience of patients with synovial sarcomas. grrrrr. I went on to a local PT for a few excruciating painful sessions and I have a very high pain tolerance. I finally decided to stop in at a podiatrist office I drove past multiple times a week to see if they accepted my medicare and advantage plan. They did. I made an appt soon thereafter. The 40 yr veteran of podiatry thought it was a ganglion cyst and asked if I wanted him to drain it. He tried, but nothing would drain. He suggested it could be a hamangioma (sp?), an entanglement of blood vessels, but that surgery would require surgery center. After wrangling with my “advantage plan” I ended up going to a hospital 40 miles from home to comply. The tumor was nothing the podiatrist had ever seen. All these providers never suggested getting an MRI or having a biopsy while the tumor was in place. The podiatrist sent out the specimen for pathology. It took a couple of weeks for results. The “advantage plan” denied a second opinion outside of their preferred hospital network. Thankfully, my husband is a tenacious research person and became my case manager. I was within a window of opportunity to get out of that plan and into a supplement instead. He interviewed numerous docs from Salt Lake City, Seattle, San Francisco and Sacramento. Where I live in Boise there are none who can treat surgically and the ONE in town who can diagnose only sees this a couple of times a year. We settled on Univ of CA Davis in Sacramento where a doc performs surgery several times a week. That was who we wanted!!! Unfortunately he didn’t have the whole tumor to deal with, but a little stub and a vacant spot where he worked to get clean margins. A week later I had a skin graft that was amazingly successful and highly unique. Between hospital and rehab my stay was 28 days. I never had a moment of pain through either surgery and knew without a doubt the healing hand of the LORD was upon me. I still believe that! I believe God is using me for His glory and I am really ok with that. Chemo and radiation are never an option for me unless God changes my mind. Fast forward to this past January…I was experiencing foot pain, not ankle pain. Went to my monitoring oncology doc who saw nothing in an xray and sent me on my way. I suspected maybe scar tissue had developed that could be impinging on a nerve or tendon. A referral to PT was granted and it helped (different PT than before). June rolls around for my annual MRI which was to be my “graduation” picture. Bam! A mass had returned and a biopsy confirmed it as synovial sarcoma. The report says it is a little less than 4 cm. That answers your very short question, but I thought some back story was appropriate. I will be back at UC Davis in a couple of weeks for another consult. I know one of the options is amputation and I have accepted that as a welcome treatment plan. Already meeting with prosthetic companies and the amputee support group in Boise this week just to network and get information to process before hearing the possible traumatic news. I am not afraid of any of this. I am at great peace. I just want to be a good steward of this body. A miraculous healing without any of the above is still the preferred outcome.


#15

proton radiation is effective for SS


#16

Proton Radiation is very effective. My Wife had a SS tumor on her lower left lung that was treated with Proton Beam Radiation at the Mayo Clinic this January. I can’t remember the dimension of the tumor but her surgeon said it weighed about 10 pounds (very large tumor).After treatment was complete, she had surgery to remove the tumor. Our surgeon came in the room right after surgery and let us know they could not find a single viable cancer cell (they have a pathology lab that tests on the spot) because of how well the radiation worked. She also said that was the first time in her career that she has seen radiation work that well. If anyone here has the option to undergo Proton Beam Radiation I highly recommend it. If anyone has any questions about the process let me know!