Akash (Dermatofibrosarcoma Protuberans) : A rare type of cancer

Akash sarcoma cancer survivor

Lump to Lipoma:

My problem started in 2017 when a small lump had formed on the back of my right shoulder, and it came to my notice while taking a bath. I had no idea how long it had been there. However, even after that, I ignored it, thinking that it might be a minor swelling due to an insect bite. 

 

After two to three months, I made a visit to the local doctor and was told that it is a lipoma and a common tumor, that I do not need to worry about. He told me that it wasn’t necessary to remove it unless it pains. Later, my parents got me checked at a hospital, and the doctor had the same opinion. 

The Decision:

My parents were keen to have it removed, but I kept on giving excuses. After a year, in February 2019, I decided to get operated as my project load started reducing. My operation was scheduled at Sakra World Hospital on 13th Feb 2019. A day before that, I had to get an ultrasound as a checkup before the surgery. 

The Downhill Ride:

Things started going downhill from there. The radiologist said he doesn’t think it is lipoma because he saw blood supply in the tumor. And lipoma is supposed to be just fat deposit. The surgery went as planned the next day, and the surgery lasted around 30 minutes, where the lump was removed. 

The Declaration:

I was discharged the next day and told to wait for the biopsy report. The report suggested that I have a cancer called Dermatofibrosarcoma Protuberans (DFSP), a rare type of cancer, the IHC reports confirmed the reports. 

Treatment Protocol:

After the diagnosis, I went to an oncologist at Sankara Cancer Foundation. He suggested it is a locally recurring tumor and I will have to go through a wide excision where they will try to remove the entire tumor with some margins so that the area is completely cleaned of malignant cells. An MRI was done to identify the approximate size of the tumor. The doctor told it was a big tumor of about 5cms size. 

Going under the Knife:

So, I went under the knife for the second time on 28 Feb 2019. After the second surgery, the biopsy reports showed the tumor, although completely removed, the smallest margin was just 1 mm. Typically, a safe margin is around 2-3 cm., so it was still touched and go situation., My oncologist suggested we wait now and follow up every three months to see if it is recurring.

The Importance of a Second Opinion:

At this time, I also went to three-four hospitals for a second opinion. Many doctors suggested I should go for radiation to completely kill any chances of recurrence. But my oncologist suggested it is not a good idea because, given my young age, radiotherapy will put me at a high risk of second cancer later in life and also other side effects.  

 

As per him, the cons of radiotherapy were more than the pros in my case. It was getting extremely difficult for me to decide, especially when different doctors are giving a different opinion, and it was left entirely on me to decide. 

 

Finally, for one final opinion, I referred to TATA memorial hospital to Mr. Ashish Gulia. He asked me not to consider radiotherapy. He told him me, he has been researching this disease for some time and in fact, said that in sixty percent of the cases, the tumor remains dormant. So, there was no need for the second surgery as well. He recommends taking my oncologist’s advice and follow-up checks every three to four months. 

Astray:

Life has literally turned its head around in a matter of two months. From enjoying my life, work, traveling to places, to juggling around from one hospital to the other, and it has been a very stressful and depressing time.

Gasping for Breath:

I am trying to get back on my feet and bring a change in my lifestyle. I was aware of Love Heals Cancer since Nitesh Prajapati was my senior at IIT. I had been reading about his journey with Dimple during their trying times. It was a huge shock for me when I came to know about his condition and sincerely admire how Nitesh and Dimple handled it. I joined this group in the hope of any help for going through this stressful phase, to get rid of that fear that has engulfed me in the past few months.