Widow raises awareness of rare kidney cancer linked to sickle cell, following husband's death

A woman from Oldham whose husband died of a rare kidney cancer has created a charity to support people with similar diagnoses.

Nicola Casey’s husband Ricky Casey passed away at 49 after a year long fight with Renal Medullary Carcinoma (RMC), a rare and aggressive kidney cancer.

Nicola said: "He was a happy, really fit and healthy guy. A really popular guy in the community as well. He is well loved and really well missed by everybody, not just me."

In March 2018, Ricky developed a dull ache in his testicle which doctors suspected was an infection.

He was then prescribed antibiotics.

On 26 June 2018, Ricky had his last day at work. At the time he was helping to battle the wildfires on the Saddleworth moors. Credit: Nicola Casey

In weeks, this very quickly evolved into more serious symptoms like weight loss, shortness of breath and severe pain in his left flank.

Then began the long journey of undergoing different tests trying to get to the bottom of his symptoms.

At the time Ricky was still working and fighting the fires on Saddleworth Moors.

In June 2018, Ricky helped to battle the wildfires on the Saddleworth moors

Sadly, Ricky’s worsening pains resulted in him being told to stop working on the Moors fire. He never returned to work again.

In July 2018, an ultrasound scan picked up a mass on his left kidney and in the lung.

After many biopsies at various hospitals, it was a biopsy at North Manchester Hospital that he received a diagnosis of RMC.

What is unusual about RMC is that most individuals with this type of cancer have the Sickle Cell Trait or Sickle Cell Disease.

What is the sickle cell trait (SCT)?

  • Having SCT means you have inherited the sickle cell gene from one of your parents

  • The trait does not mean you have sickle cell disease and people with SCT rarely have any clinical symptoms related to the disease

  • People with SCT usually do not have any of the symptoms of sickle cell disease and live a normal life.

At Ricky’s first appointment at The Christie, the couple received the devastating news that his cancer was stage four.

Nicola said: “He was due to start his chemotherapy within the next two to three weeks of the diagnosis but it was here [at The Christie] that we had the news that it was stage four.

“It had spread to other parts of his body and there wasn’t much hopeful success with this type of cancer.”

Ricky began chemotherapy treatment in 2018.

While Ricky took a break from chemotherapy, Dr Tom Waddell, a medical consultant at the Christie Hospital, submitted a request for funding to the NHS for a drug called Bortezomib.

But funding was rejected because there wasn’t enough evidence to prove it would work.

Nicola said: “I was devastated and obviously Rick was devastated, but there is nothing you can do.”

Ricky passed away in Nicola’s arms on 1 May 2019.

Because RMC is so rare, there’s little research into the success rate of treatment for this aggressive cancer in the UK.

What are the symptoms of RMC?

Dr Tom Waddell, Medical Consultant at the Christie Hospital, treated Ricky. He is also a Trustee of the Ricky Casey Trust.

He said: “RMC is really less than one percent of all renal cancers which means it’s a very rare diagnosis.

“Really what we would be looking to promote as a charity, would be about early recognition of symptoms from the kidney itself.

“Loin pain, pain in the region of the kidney in the front or in the back, passage of any blood in the urine, or unexplained weight loss would all be key symptoms.”

The Ricky Casey Trust

Following Ricky's death, Nicola turned her grief into something positive and created the Ricky Casey Trust. The charity aims to:

  • Raise awareness of rare renal cancers and the link between RMC and the Sickle Cell Trai

  • Raise money to start the first clinical trials in the UK for RMC - the charity need £500,000 and have raised £100,000 so far

  • Support people who are diagnosed with rare forms of renal cancer

The trust are supporting Leon Talabi from Manchester who was diagnosed with RMC in November last year.

Leon spoke to Granada Reports about his RMC diagnosis and how helpful the Ricky Casey Trust have been

Leon said: “The Ricky Casey Trust have embraced me from minute one.

“There’s groups that they have introduced me to that we have each month, and that’s helped me a lot just to speak to people who have the same cancer as me.”

He added: “The Sickle cell trait is what I have and it is what has led to the cancer.

“If I survive, not saying it’s irrelevant, but it’s not necessarily the message that I want to get across.

Credit: Leon Talabi

“The message is to get yourself checked for the sickle cell trait and not get yourself in my position."

Nicola, CEO of the Ricky Casey Trust said: “If you have got the trait and you are having signs and symptoms when you present yourself at the GP then they will know then that they need to send you on a very quick path to try and diagnose this cancer [RMC] early.

Nicola hopes her charity will continue to raise awareness and save lives.