I am Bhawna, 39 years old and a Desmoid Fibromatosis patient. It all started in early 2018 when I started feeling pain in my right hand and behind neck. Being a teacher I thought it might be cervical pain as my job required me to stand for long hours and do a lot of notebook checking. I got myself checked up with general physician, orthopaedic and neurologist. They all gave me medicines but the pain instead of subsiding became severe and unbearable.
In November 2018, I consulted Neurosurgeon and got MRI done. He told me that there is a lump at my right Brachial plexus and needs to be operated. His initial view was that there are 90% chances of it being benign neurofibroma. In November, 2018 I got operated at Sir Ganga Ram Hospital and was told that tumor was totally removed. Biopsy report also confirmed it to be Benign Neurofibroma. Myself and my whole family got relieved on hearing this.
However, I never got relief in pain and then again in March’19 I consulted Neurosurgeon. He got another MRI done and we found that tumor of same size was there at same location. Post that we got the previous blocks reviewed at three (3) different hospitals. Sir Ganga Ram again confirmed it to be Neurofibroma, GB Pant Hospital diagnosed it to be Leiomyosarcoma and AIIMS gave possibility of Fibromatosis.
As the reports were confusing and giving different possibilities we consulted various neurosurgeons and all suggested to get it re-operated. We again got it operated in May’19 and this time at Paras hospital, Gurgaon. Now, biopsy report confirmed it to be Desmoid Fibromatosis. Also, Neurosurgeon told us that tumor has engulfed nerves in brachial plexus and hence, they were able to only partially remove it.
After that we started to search about Desmoid tumor and the way forward to manage it. We came in touch with Sachin Sarcoma Society and with their help and guidance consulted Dr. Sameer Rastogi at AIIMS. Right now I’m under observation of Dr. Sameer Rastogi and taking prescribed medication. We are grateful to Dr. Sameer and Mrs. Rashi Kapoor for helping and guiding us.
Basis my journey I observed that Desmoid tumour is not only “RARE” but also “UNAWARE and MISDIAGNOSED DISEASE”. This disease happens to 2-3 people in million and very limited research and medication is available. Also, no defined line of treatment is there for now. Anything available right now is still a research. DTRF (Desmoid Tumor Research Foundation), United States is trying to spread awareness on this and is providing research aid to companies for this. Unfortunately, there operation is limited to US and Europe. Also, any clinical trials happening are limited to West world only.
Sachin Sarcoma Society and Dr. Sameer Rastogi is trying their best to spread awareness about this in India. Dr. Sameer is discussing about this at various forums and conferences to bring best medications and treatment for patients in India.
I urge all of you to join hands in this and spread awareness.
We all need to stand together to get the world’s attention to this disease and get a suitable cure.
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