Synovial Sarcoma - Online Support Group

Please suggest best treatment in India for Synovial sarcoma

Thx for that info.
They say for sarcoma cases we need to see specialist doctors.
How is your sister now? I see that you sister had SS
Where was she treated
What grade tumor she had
How old is she

Hi Mito ,
Dr Manish Agarwal is one of the best doctor for sarcoma in india. He did limb salvage for my sister.He saved her right leg as most of the doctor in india were saying they need to amputate her leg even doctors from TMC.She had her surgery by doctor manish agarwal from hinduja hospital mumbai.

In March scan we found that she has multiple lung nodules in both lungs.She is currently on third cycle of chemotherapy and nodules are stable on this chemo.
We are taking Chemotherapy treatment in Ahmedabad gujrat as it near to home my hometown.
She is 24 year old.

That’s sad to hear about your sister. Hope after chemo she’s going to be alright.
Do you know how big her tumor was?
While treating her leg, wasn’t there nodules in her lungs? Did they do scan then? Or the nodules appeared after few months only?

Her tumor size was about 3-4 cm. She had two surgeries. First surgery was without the knowledge of sarcoma.Second Surgery was done to get remaining cancer cells and margin.
Her chest scan was clear during surgery. It appeared after surgery.

Wishing her good health. My prayers for her.

I think dr kapil kumar from blk delhi is best surgeon in india for sarcoma patient and lung surgery he has 26 years experience in rajeev gandhi cancer hospital new delhi and for chemo rajeev gandhi hospital is good

Hi Lokesh,
I wish and pray for your sister and hope she will recover soon from this situation. Hope she is doing fine now? How is your experience with Dr. Manish Agarwal and hinduja hospital?

Hello Rahul
Sorry to hear your brothers news. Where’s he getting treated? In India I doubt if there are many hospitals that see synovial sarcoma cases. Sho you’ve to be very careful selecting hospital and doctors. Tata medical centre Mumbai is one of the best as they see many cases. Dr Laskar Siddhartha is a radio oncologist and Dr. Chinnasamy is medical oncology.
How big is his tumor? Have they done pet scan?

Hi Mito,

We are doing treatment in TMH mumbai.
In last week of march he had surgery and until that we were not aware that it’s sarcoma. Because both MRI and biopsy before surgery were normal. In biopsy after surgery Dr. discovered that it’s synovial sarcoma and asked us to go to Tata memorial hospital in Mumbai for further treatment.

At TMH after MRI and histopath, report says it’s synovial sarcoma and Dr.(Dr. Prakash Nayak) said amputation of leg is required.

He is just 26 now and I am in complete dillema on what to do.
I suspect that the doctor were not able to remove whole tumor with surgery, I want to know are there any consequences if we go for chemotherapy instead of amputation? Can sarcoma spread from leg to other parts of body? Do sarcoma spread through blood or lymph nodes? How quickly it spreads?

Dr. are saying amputation is required after chemotherapy as well.

Before the surgery, there were two MRI and Biopsy were done.
One in (Aug-2018) since he was suffering from swelling and pain in his right leg. Then other before surgery(Last week of march) but none of the MRI and biopsy shown the traces of sarcoma.
We consulted with Dr. Arun Behl from Fortis mulund as well and received same opinion. We have not yet done PET-CT Scan, but we are going to do it tomorrow at Fortis to be sure metastasis are not spread. At TMH waiting period is so long for PET and Dr. from TMH saying PET is not required in all type of cancer.

Meet Dr Agarwal once from Hinduja hospital. He is an expert in limb salvage surgery.
See if he can save the leg from amputation

Experience with Dr Manish has been really good so far.
Along with good doctor he is good person and empathetic too.

Hi Lokesh,
Thanks for your response and suggestion. I will check with Dr. Manish Agarwal. Could you please tell me where was the tumor position in leg, was it below knee(back side)? Any idea, how below it was from knee due to which limb salvage surgery was possible? Was there blood vein(artery) involved in tumor? Please let me know, this will be important information for me.
Also you said there were nodules in lung after surgery and went through chemotherapy of 3 cycles. What is status of nodules, are they removed? Any other treatment like radiation or targetted therapy was taken?

I have also Synovial sarcoma in inguinal region since 2015,and operated 5 tym n taken chemotherapy n raditaions. Last surgery done in December 2018 at max hospital by Dr. harit chaudhary, at present it’s spread in my lungs multiple nodules . Nw I’ll go for targeted therapy den sbrt.

tumor was above knee.after 6 cycles of chemo She is currently on oral votrient chemotherapy for around 6 months .
and her lungs nodules are under control and shrinking slowly.

Brother (age 27)my tumour in right inguinal region near by thigh and Dr. Said luckily my artery blood vein not involved in tumour and I taken 6 cycle of chemotherapy in 2018 April nd operated in December 2018 . N recently I’ll go for targeted therapy for lungs nodules . Medicine name votrient 400mg… I suggest to meet harit chaudhary in max hospital Delhi … (coz I also go TATA memorial n fortis) .max costly but it’s best …here r sme more treatments like RFA, SBRT

Wats the update Rahul? How’s your brother now. What have you decided ?

How big is the tumor?

Dear Rahul,

Sorry to hear about your brother. I would suggest you to consult at Sarcoma clinic at AIIMS Delhi on priority basis.Dr Samer Rastogi (Medical oncologist).There are more than 100 Sarcoma patients are getting treated here.

Decision of chemotherapy before surgery is a subject of expert opinion.

I am currently getting treated for Ewing’s sarcoma at AIIMS Delhi.

If you need any further help please get in touch with me , I will get you connect. You can share your contact no.& Details at (■■■■).

Thanks

Dhanuj.

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Hi everyone,
I am Rashi Kapoor, a synovial sarcoma survivor who has undergone surgery, 5 cycles of chemotherapy and radiation.
My treating doctor has been Dr Sameer Rastogi who is a Sarcoma specialist in AIIMS , New Delhi.
I was given 5 cycles of chemotherapy and was given ifosomaide and doxorubicin.My limb salvage surgery was done by Dr Ashish Gulia , TMH Mumbai.I would recommend all the sarcoma patients to come to AIIMS , NEw Delhi and take opinion from Dr Sameer Rastogi as he sees more than 100 patients in the OPD.
I was diagnosed with Synovial sarcoma of right knee in 2016.Its been three years and by god’s grace my scan is coming out to be fine.
I strongly suggest all the people to go to the right doctor ( Sarcoma specialist) and go for regular follow ups after the treatment gets over as it is a high grade cancer with a high probability of coming back in lungs.So it’s important to keep a. Check on the disease.I am so greatful to my treating doctor Dr Sameer Rastogi because of whom I have got better and now doing well.He is a very empathetic and compassionate doctor.
After the completion of my treatment ,We the group of Survivors and caregivers have made a patient support group for sarcoma patients.
It is named as Sachin Sarcoma Society.
The website is www.sachinsarcomasociety.org.
Pl feel free to reach to us at our HELPLINE NUMBER 9667248800 for any guidance and assistance and write to us at support@sachinsarcomasociety.org.

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Hello everyone,
This is regarding Rhabdomyosarcoma treated from AIIMS, New Delhi (lndia).

Myself Bhushan Valecha, father of Baby Navya Valecha (7 yrs at that time), patient of Rhabdomyosarcoma (a rare disease). At her early stage (in October 2017) Navya had severe Nose bleeding, we had given her some home treatment to resolve the same but as the time passed her complains about nose bleed increased. Then we approached the ENT specialist and after consultation we took some tests then we came to know that she had a tumor in her neck side. Soon we approached ‘BLK Hospital’ for surgery and then we took her AIIMS (simultaneously we also went for Rajiv Gandhi Cancer Institute & Medanta Hospital, Gurgaon) as second option. But then we finalized the AIIMS Hospital because of its cure statistics which was proved a good decision. We are fortunate enough that we approached AIIMS and Doctor Sameer Rastogi (Second God for Navya). Seriously, he is so much passionate and indeed an expertise in Oncology Deptt. , one of the best Doctors in New Delhi (India).
At first, after seeing the reports and other tests Sameer Sir advised her for chemotherapy (12 cycles) and 30 days radiations by Doctor Rambha (AIIMS Delhi).
I would recommend all the Sarcoma patients to visit AIIMS, New Delhi.
Now my Daughter “Navya Valecha” is completely diagnosed and well. Her routine tests are still going on under the supervision of Dr. Sameer Rastogi. I remember the day when she was in a very critical condition, Doctor Sameer took her in his arms and rushed to emergency ward. He takes care of his patients efficiently and also always available in any channel. I recommended Doctor Sameer to every patient who was/is suffering from any kind of sarcoma.
I can completely count on Dr. Sameer Rastogi AIIMS, New Delhi. Thanks all.