Renal Medullary Carcinoma: An In-Depth Look At A Rare Cancer

Renal Medullary Carcinoma (RMC) is a rare kidney cancer that predominately effects young, Black people who carry the Sickle Cell trait or have the disease. There isn't enough research done on this and Sistem contributor Hiba highlights this issue in a piece dedicated to our friend Chad Alexander.

It is hard to commence this without a cliché definition of what 2020 has been, deplorable is a word that comes to mind. It’s a year that has illustrated the delicacy of life, the importance of the people around you and a year that has left us all feeling like we’ve been punched in the gut. I guess you can say it has made us thankful, particularly for the moments shared with those who are no longer here with us.

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As many of you are already aware Chad died yesterday Monday 14th September shortly before 7pm at home surrounded by his family. I wish I could say that he’d had enough and had decided it was time, but the truth is he endured so much pain for way too long but he was willing to go through that pain to see his children grow up, to grow old with me, to build his business, to continue to be positive member of his wider community, to just live life… He had so many plans and there are just no words to describe how devastated I am to have to admit that we tried so hard but it just wasn’t enough. On behalf of myself and our children I’d like to thank all of you for your continued support, many of you have known Chad longer than me and I know a lot of us took a blow yesterday that will resonate for the rest of our lives. The money you all raised is in an account and if anyone would like that money back please send me a message, otherwise it will go towards Chad’s funeral and I plan to make a donation to St Michael’s hospice who for the 18 days that Chad was at home helped to manage his pain and support me so that I was able to continue Chads IV antibiotics and treatment for the infection- as I said before the plan was always to continue with treatment. They receive no NHS funding to support people at home, despite this they do an incredible job. The outpouring of love is amazing to see, please continue to say Chad’s name and share pictures and stories. Our children are too young to have made lasting memories of their daddy so will rely on others to make sure Chad’s legacy lives on. Lastly please don’t forget the devastating disease that has lead us to point. Renal medullary carcinoma is a rare and aggressive cancer that is often only diagnosed at an advanced stage because symptoms are not recognised. Tell a friend to tell a friend … Are you a carrier of the sickle cell trait? Blood in urine Flank pain Unexplained weight loss #BunCancer

A post shared by @ bun_cancer on

The pain of losing people only intensifies when you start to see the reality surrounding conditions that disproportionately effects those that look like us. Put plainly, the disparity of research surrounding Sickle Cell Disease, (highlighted in Black Brits and the Sickle Cell Crisis) signifies how little we are all informed. Whilst most of us have heard of Sickle Cell, the reality of the condition just hasn’t been investigated enough. People suffer with their symptoms without guarantee of understanding, empathy or even treatment.

The fact that illnesses which largely effect Black and ethnic minorities are poorly researched and diagnosed, has devastating effects on the outcome of chemo, surgery and survival rates. Like many RMC patients, Chad’s journey, began with symptoms of blood/clots in urine, weight loss and back pain, which was often mistaken for working out too hard or eating the wrong foods, assumptions we are all bound to make. @Bun_cancer is a page that documented Chads journey with cancer which was outrageous to comprehend.

It took doctors approximately nine weeks to diagnose Chad, all while displaying symptoms of RMC and having the Sickle Cell trait, where it had further spread to his spleen, pancreas, lung and had nodes (separate tumours) under his diaphragm. A few weeks after this, Chad and his partner found out it had also spread to part of his hip and sacrum, meaning the kidney cancer had spread all over his upper abdomen – which was crucially missed in the first scan.
A heartbreaking fact is that this is not uncommon for patients of RMC, as diagnosis usually occurs at around stage 4 of the cancer.
With stage 4 cancer, the advised treatment in the UK is palliative.

The amount of young people who are completely unaware that they may be carriers of the Sickle Cell trait. People who lead healthy lives, may not have severe symptoms or may not be referred to specialists by doctors who don’t take their experiences seriously. Diagnosing and noticing symptoms of RMC is harder when you are unacquainted with what you should be looking for. According to the National Organisation of Rare Diseases, it can be better treated if diagnosed early. But getting the treatment is also an issue.

Chad and his family had to raise funds for treatment in the USA. £50,000 was raised for treatment at the MD Anderson Cancer Centre, in Houston Texas, the only known place globally to have successfully treated a patient with the cancer. While the same chemo is available here, the USA is more advanced within their research of RMC.
Chad unfortunately passed away from his illness on September 14th but his memory lives on with his instagram page still being updated. And his closest friends recently airing a tribute show on Westside Radio on what was his usual show time.

As we learn more about Sickle Cell disease, trait and its related conditions. As more people are being diagnosed and the demand for rare blood type increases, we must donate. For our friends, for our families and for those who need us.

Editors note: Hiba has donated her fee for this article to Kidney Cancer UK & Sickle Cell society

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