Synovial Sarcoma on left ankle

Hi Bakri 

Sorry to hear about what you have been going through especially when there were two operations where no cancer was detected. My wife's sarcoma is very different and it took quite some time to find it but the good news on that front was it was not so aggressive.

I wonder if if might help you to speak to someone at sarcoma uk who are specialists in this area. The options you have been given seem quite wide ranging so all we can do is get the best information we can and make a decision based on that.

<<hugs>>

Steve

Thank you so much for your reply. How is your wife feeling now? 

It took a while and some help but my wife now rates her position as living with cancer. She says she is not bothering it and it is not bothering her.

Her oncologist is so pleased with the outcome and says if she is happy and there is no evidence of progression next year that he would be happy to discharge her to GP care since there is little point making her come to appointments and x-rays etc when there is no change.

<<hugs>>

Steve

The exact same thing happened to me except I am in my 50's. I had two prior operations as well. The first operation I was told the tumor was benign plantar fibromatosis, even though it was sent off to pathology. The tumor grew back and I had a second surgery this past July. This time the pathologist was unsure and sent it off to Cleveland Clinic who diagnosed me with Grade 2 Synovial Sarcoma. My tumor is also just under my ankle on the outside of my right foot. I immediately went to the closest of the 3 Cancer Centers in FL that has a dedicated Sarcoma Unit. I was ,,,,,,assigned an oncological surgeon who made a plan for me which is, I believe, the current standard; radiation and wide excision. I have undergone radiation as a neo adjuvant therapy to shrink the tumor which will be followed by surgery which I have in 2 days. It has been a 7 month process so far. When the did the CT of my chest to make , there was no metastases they found a very small area of abnormal breast tissue in one of the ducts on the left side. I went back for more tests and it wound up being Ductal Carcinoma In Situ. I had a lumpectomy to remove the tumor and reconstructive surgery two and a half weeks ago. I will have radiation on my breast after my foot heals a bit.

Moffitt Cancer and Research Center on the USF campus has been amazing. I have a big group of sarcoma doctors who meet is a tumor board discussing each individual case.

My 3-month scans have shown there is still no spread of the synovial sarcoma and my tumor has shrunk following radiation which makes a smaller area that the doctor has to excise during the operation. We are still a bit unsure what the reconstruction will be like with the plastic surgeon who is working alongside my sarcoma surgeon but they will find out when they go in for the operation how extensive the reconstruction will be. I am just happy and feel very fortunate and that they're able to do limb sparing surgery. I feel like finding and going to the clinic that has a dedicated sarcoma unit was the best choice for me.

I hope you are okay. How are you feeling now? 

I hope you are ok. How do you feel now? 

Hello Bakri,

I hope you are well too and that you have found a facility that can provide you with the current standard of care for Synovial Sarcoma.

I am doing quite well despite having issues with wound healing. As I mentioned before, I had surgery for the breast cancer and they removed the tumor with clear margins surrounding it. I am currently halfway through the radiation treatments for that and am faring well with minor side effects to the therapy and hormone blocking medication I must take for 5 years.

As far as the Synovial Sarcoma is concerned, I had my wide excision surgery at Moffitt Cancer Center in Tampa, FL mid January. They removed the tumor with clear margins and as of now there is no sign of cancer. As my foot had endured 2 prior surgeries and radiation, the skin in that area was compromised. My Orthopedic Oncological Surgeon and my Oncoplastic Surgeon did a wonderful job.

I apologize that this is a somewhat involved explanation...

Because there was a deep wound left from removing the tumor (which, fortunately had not spread) the plastic surgeon closed my wound with a local pedicle skin flap that was rotated from an adjacent area of my foot over the wound to provide healthy skin for healing. He then took a small thin skin graft from my thigh to cover the area left exposed. They need to cover the wound with the thicker skin flap as there are blood vessels and nerves which they hope will grow and reattach to the wound bed below. The thinner skin graft from my thigh was placed on the exposed area which had not been compromised by cancer, scar tissue and radiation so therefore had a wound bed that would heal over on its own with just the thin layer of skin as protection.

Going into the surgery my surgeons told me there was a possibility that the skin flap might not "take" and would fail. Things seemed to be going well but about 2 months after the surgery there was wound dehiscence (separation at the edges of the flap) and necrotic skin which had to be removed with another surgery a few weeks ago. They left the wound bed open this time and sent me home with something called a Wound VAC. This is supposed to enhance the natural healing process. They do intermittent therapy switching off between using the VAC for a week or so and then doing just a wet dry dressing with an anti microbial solution (Dakin's Solution) for a few days followed by one with just a saline solution for a few days to give the healthy tissue surrounding the wound a rest.

That is where I am at right now. My underlying wound bed is looking healthy and the hope is that it will continue to slowly heal and that there will likely be another skin grafting or skin flap surgery sometime this summer. If I get really lucky my wound might decide it can heal on its own! I will see my surgeon at the end of the month to reassess but in the meantime, a home health nurse comes to my house every other day to change my wound dressing and check on my wound. I have suffered some nerve damage and am still having mobility issues as I need to keep off of my foot and elevate it as much as possible. But the great news is that they have removed all of the cancer and I still have my foot!!

I am fortunate that my employer (I am a teacher at an international boarding school) and co-workers are amazingly supportive and have held my job and covered for me as I have had to be out on medical leave. 

Have you had any more luck with a solution for your Synovial Sarcoma? Have you found a good care center that has experience treating this specific type of cancer? It is very rare and from what I have researched and been told by my sarcoma team, the best current standard of care for a localized tumor that has not spread (as mine was, Stage 2 intermediate grade with spindle like cells) is the wide excision surgery with radiation therapy, either before or after surgery.

I realize this is a very lengthy reply, but it is my sincere wish that you are finding excellent care and being provided with the hope and positivity that I have been fortunate to experience. Sadly, statistics say this type of rare tumor (as are a lot of sarcomas) is misdiagnosed at least 50% of the time. My Orthopedic Oncological Surgeon said he believes the percentage is actually much higher! I feel very lucky thus far and, though I know it is an extended process, I feel very hopeful for a successful outcome. The care and love I have been shown over these past many months have more than overshadowed the pain and the difficulties.

Blessings to you Bakri!

-Cheri