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Akash (Dermatofibrosarcoma Protuberans): A Rare Type Of Cancer

Akash (Dermatofibrosarcoma Protuberans): A Rare Type Of Cancer

Lump to Lipoma:

My problem started in 2017 when a small lump 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 it might be a minor swelling due to an insect bite.

After two to three months, I visited the local doctor and was told it was a lipoma and a typical tumour that I did not need to worry about. He told me 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 13 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 didn't think it was lipoma because he saw blood supply in the tumour. And lipoma is supposed to be just a 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 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 tumour, and I will have to go through a wide excision where they will try to remove the entire tumour with some margins so that the area is thoroughly cleaned of malignant cells. An MRI was done to identify the approximate size of the tumour. The doctor told me it was a giant tumour 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 tumour, although wholly 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 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 tough for me to decide, especially when different doctors gave different opinions, and it was left entirely to me.

Finally, for one final opinion, I referred to TATA memorial hospital to Mr Ashish Gulia. He asked me not to consider Radiotherapy. He told me he has been researching this disease for some time and said that the tumour remains dormant in sixty per cent of the cases. 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 turned its head around in a matter of two months. It has been very stressful and depressing, from enjoying my life, work, and travelling to places to juggling from one hospital to another.

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 massive shock when I learned about his condition, and I sincerely admired how Nitesh and Dimple handled it. I joined this group in the hope of any help going through this stressful phase, to get rid of that fear that has engulfed me in the past few months.


Akash (Dermatofibrosarcoma Protuberans): A Rare Type Of Cancer

Lump to Lipoma:

My problem started in 2017 when a small lump 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 it might be a minor swelling due to an insect bite.

After two to three months, I visited the local doctor and was told it was a lipoma and a typical tumour that I did not need to worry about. He told me 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 13 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 didn't think it was lipoma because he saw blood supply in the tumour. And lipoma is supposed to be just a 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 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 tumour, and I will have to go through a wide excision where they will try to remove the entire tumour with some margins so that the area is thoroughly cleaned of malignant cells. An MRI was done to identify the approximate size of the tumour. The doctor told me it was a giant tumour 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 tumour, although wholly 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 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 tough for me to decide, especially when different doctors gave different opinions, and it was left entirely to me.

Finally, for one final opinion, I referred to TATA memorial hospital to Mr Ashish Gulia. He asked me not to consider Radiotherapy. He said he had been researching this disease for some time and said that the tumour remains dormant in sixty per cent of the cases. 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 turned its head around in a matter of two months. It has been very stressful and depressing, from enjoying my life, work, and travelling to places to juggling from one hospital to another.

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 massive shock when I learned about his condition, and I sincerely admired how Nitesh and Dimple handled it. I joined this group in the hope of any help going through this stressful phase, to get rid of that fear that has engulfed me in the past few months.

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