Pravjoth's Rare Cancer Journey

Pravjoth

Pravjoth

Pravjoth was diagnosed with a rare cancer aged 17. Having recently graduated from university, she is now an Entrepreneur. Her ambition is to inspire others with medical conditions and has launched Movement Fitness and Nutrition. You can follow her on social media channels by searching ‘Pravjoth Gill’.

Or visit her website www.pravjothgill.co.uk

Three years ago, I was diagnosed with Stage IA endometrial carcinoma (cancer) in the lining of my uterus.

This was after more than 6 years of unexplained symptoms. I was aged 17 at the time of my diagnosis, which makes it incredibly rare. Normally this diagnosis affects older patients over the age of 40 (in their menopause years) where treatment often includes having a hysterectomy.

When my oncologist gave me my diagnosis I was completely shocked, as were my family and friends. I felt uneasy with myself because I never imagined I would have cancer – especially being so young.  However, as we had been looking for answers since I was 11 years old, in a way, I was relieved to know what it was but uneasy because it was such a rare type of cancer for my age.

At the beginning of my treatment I went on to chemo drugs. My oncologist thought it was a good idea to be given an oral dosage of chemotherapy rather than IV treatment. This lasted for 3 months,  but unfortunately it did not have any effect on the cancer cells. 

This was then followed up with hormone therapy, where they inserted an IUD in my uterus. Unfortunately the hormone therapy did not work and my body did not accept the IUD, rather it caused a bad infection.

Ultimately, the medical team and I decided to go for surgery where they did a hysterectomy and removed my cervix, uterus and fallopian tube, but we agreed to keep my ovaries.

In the three years since my diagnosis, I feel more empowered to do the things that I am doing to raise more awareness about rare cancers and reproductive cancers for young people as this could happen to anyone. 

My hope is that by sharing my experiences, more people will look out for symptoms and unusual changes in their body, and to know when something is wrong with their body, to visit their GP and keep challenging them if they feel something is wrong.

'About a year ago, I found myself in a networking session, where I met Professor Andy Hall, Chief Scientific Officer for RareCan.'

I researched RareCan some more and saw they are building a patient led community for people with different types of rare cancers, producing data to help enable research. From my own experience,  I know that the values of RareCan match mine. I know that I want to support them in spreading the word about what RareCan hopes to achieve.

I know from my experience there is a lack of knowledge as to why people may have a type of cancer. It is especially hard where there may be limited or no treatment options. In addition the treatments on offer may not be efficient for rare cancers because so little is known. It also depends on other patient factors such as age, gender, fertility levels, pain tolerance etc. I had to lose out on my fertility at a very young age.  I hope this can change in the future.

As a blogger, I have talked about my rare cancer diagnosis and RareCan on my YouTube blogs. I want to help RareCan raise more awareness about the need for data to drive research for people with rare cancer.  

Anyone can join the RareCan community – the more people they have, the better the data they will have for researchers and in turn that will help improve treatments in future.

As the RareCan community grows, I am hopeful that I will meet others who also have rare cancers and to hear their story. It helps me know that I am not alone in my cancer remission journey. Being part of a rare cancer community as it grows, I know that we will feel empowered to put ourselves in front of researchers because we will remain in control of our information 100% of the time and we can participate as much or as little as we want to.

I would encourage anyone who has been diagnosed with a rare type of cancer to join the RareCan community.

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