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Feeling helpless- what should I do?!


#1

Good day,

My name is Chanéz, Im 24 female from pretoria South Africa.

On 8 September 2012, I went in for an operation as I had a pain in my upper thigh for about 3 years and the physio said it is a muscle, but the exercises did not make the pain go away. August 2012 I started to feel a lump in my inner thigh and thats when the doctor sent me for an MRI scan, they picked up a large (5x8) mass and i had to go for surgery. The doctor said it is 90% only a soft tissue growth, but they will do a biopsy while I’m in surgery. I woke up in ICU and was told it is Synovial Sarcoma.

To make sure it hadnt spread to areas close by I went for a sonar where they could not pick up my ovaries, so to the Gynocologyst I went. About 10 days after removing my Synovial Sarcoma I had the surgery to remove a ‘cyst’, but it turns out it was a ‘Teratoma’. Luckily nothing related to the Synovial Sarcoma.

So now I was sent to the Oncologist to find out that to do next… 6 weeks of radiation to my upper thigh. Not so Bad and it went by very quickly. So now I have to go for X-rays and CT scans of my chest and leg every 3 months for 2 years. All of the scans through these 2 years showed no recurrence. Now my checkups was moved to every 6 months. So in March I went for my first 6 month checkup, first the chest scan, which came back clean, and now a sonar of my upper thigh. They picked up a mass that was not on any of the previous sonar scans. I was sent for a MRI and there 2 tumors presented.

Back to step one… I had surgery to remove the tumors 8 April 2015 and it was on my vein and the other tumor into the muscle, so they removed both tumors and a piece of my muscle. The recovery time is longer due to the radiation I had in that area. So again to the oncologist, he was very negative an d basically said that there is nothing we can do now and we will just have to wait for a recurrence… That is not good enough!

I went to another oncologist for a second opinion, so there are 3 options, amputate the leg, in plant radiation or nano technology when the tumor recur in my leg. If it is in my lungs, i can go for chemo, but chemo has almost no effect on Synovial Sarcoma Tumors, meaning its bad news!

I feel so desperate and just like I cannot do anything! Any suggestions or advice or anything??


#2

Sorry to hear this Chanez, sorry to hear this, my son had SS in his foot , chemo they said was not an option , so he had a lower leg amputation , he was 11 at the time , even though it was heartbreaking to hear and do this , we do not regret this decision as we feel it might give him a better chance . He is still cancer free at 31 months , I wish wish you well in your journey xxx


#3

Are all the oncologists you saw sarcoma specialists? Did the surgeon get clear margins? If yes, how big were the margins? This is an important question because it does influence how aggressive you want to be and whether you want to continue treatment now or wait until another recurrence.

Statistical studies can't predict what will happen in your individual case but they do show that you get a higher chance of recurrence if the margins are not clear and if the tumor is bigger than 5cm.

The benefit of amputation is that it won't be able to recur in the leg. If it does recur in the leg and you get lung metastases at the same time, your treatment options may be reduced, in particular surgeons may refuse to operate just because there are 2 sites to handle.

I wouldn't say chemo has almost no effect on synovial sarcoma tumors. It really depends on the patient and compare to other types of sarcoma, synovial sarcoma tends to be more sensitive to ifosfamide and also to votrient.


#4

Hi chanez! My name is yenessa and I am 26. I was first diagnosed 3 years ago when I was 23 and pregnant with my last child. I’ve had surgery 3 times all in my left thigh and leg. My las surgery amputation was mentioned due to the fact I had a tumor completely surrounding my femoral artery. I said no running the chance that due to the total of 7 tumors I had and it being my already 3rd surgery in the same leg that my leg would not have any movement. At the end of the day I made my own decisions and kept my faith. May 7 2014 under went my 3 rd surgery more than 16 hours… I have a scar on my left leg from my ancle to my groin were I had more than 400 stitches and a skin graf the size of a baseball on me knee. Also another 100 stitches on my “good” right thigh were veins and tissue had to be taken out to be put in my left leg! Make a longgggggg story short. After a good strong 10 months in remission in march we found out that I have yet a 4 recurrence only now it is Stage 4 metastatic monophasic synovial sarcoma in my left lung. And u know what I am OK with that. If there is one thing I have learned through out these past three years is that u have to accept and work forward. I really don’t have time to be sad or feel sorry. I just say it is what it is… What are we going to do about. And I choose to always win and live! I work am a mom to 3 beautiful children and have a wonderful husband who is also my friend and has a been a big help in this process. Familiy, friends and even people who just reach out to u like I am doing can be very helpful and somewhat inspirational. I really wish all the best and know that u have a friend here. I have never joined a support page before in the 3 years I’ve been sick off and on, but I really glad I am. There is a lot of great and wonderful stories from people here u should definitely read and reach out to. Ohhhh yeah and by the way nothing is lost… U are ALIVE it is up to you to male sure it stays that way! Give this thing the fight of your life. Each and every time like its supposed to be. Just remember you are not alone We will fight with you!!! Take care God Bless!!


#5

Elodie I start the Tracon Pharmaceutical clinical trial with trc105 in combination with Votrient on Tuesday!! Also I’m starting a #DailyVideoBlog on Instagram to kind of document the process before during and after this new journey I’m about to begin!


#6

Yenessa what page on Instagram?


#7

Yes! Alive an living!!! You are such a strong person!!


#8

@Yene_Marie on Instagram Chanez!!! Look for me I love new friends. Especially someone who knows what I’ve gone through and has to unfortunately go through it also!


#9

Elodie, 'n don’t think that there are synovial sarcoma specilist oncologist here! Can’t find anything on the internet! Can you recommend a specialist in order for me to get into contact woth him? The surgeon that did my operation said he feels confident that he removed the entire tumor, but pathologist report says they found some of these cells in the surrounding tissue he removed, so I believe Prof Le Roux when he says he thinks he got everything


#10

If the pathology report says there were cells in the surrounding tissue, it means the surgeon didn't get clear margins. It's easy for a surgeon to get the impression he got everything because sarcoma tumors tend to look encapsulated which is misleading. The pathologist has the final word on this...

I took a look at pubmed to see if I could find any hospital in South Africa with experience in sarcoma. It's tricky to find sarcoma specialists there indeed. But you may want to contact the people who did these 2 studies:

http://www.ncbi.nlm.nih.gov/pubmed/25216095

http://www.ncbi.nlm.nih.gov/pubmed/22831944

If you click on "Author Information", it will give you the name of the institutions where the studies were done. They may be able to recommend a sarcoma specialist, if there is such thing in South Africa...

Otherwise would you be able to go abroad for treatment? If yes, which country would be more convenient?