Spike Elliott's diagnosis of stage 4 cancer and a rare genetic mutation came as a result of what began as a shoulder ache.
But his journey also brought to light a concerning omission of ethnicity data from our health system.
It comes as a charity's study reveals how few Welsh patient records include information on ethnicity.
According to the Welsh government, efforts are being made to increase the variety of data gathering and health research.
Despite the "clear differences" in how particular cancers affect various racial groups, one oncologist claimed that it meant assumptions were made about how patients will respond.
Spike, whose parents are both from Jamaica, said, "It made me feel alone, as though I wasn't included in the cancer world.
"My prognosis ranged from six to twelve months. That was backed up by statistics. But when I learned that the BAME (Black, Asian, and Minority Ethnic) community is not included in the statistics, I became concerned. Because, what happened to me then?".
Despite being required to do so, according to Judi Rhys of the cancer charity Tenovus, patient ethnicity information is not frequently gathered. She wrote to the health minister requesting that more be done.
"We know that race is a factor in cancer, and that people from black and minority ethnic groups frequently have worse outcomes," she said.
The figures range from 15% to 55% among the health boards, so we are aware that they are not routinely collecting that data. In Wales, there is obviously much work to be done as we are far behind. ".
A new IT system used in cancer informatics, she continued, does not offer the option to provide ethnicity information about a patient.
At Cardiff University Business School, Emmanuel Ogbonna teaches management.
He claimed that the vast majority of people have no intention of discriminating in any way, shape, or form.
"But because they support a racialized system in their daily lives, the only outcome you can get from that system is a racialized outcome. ".
As a co-author of the Welsh government's anti-racist Wales action plan, he is aware that efforts are being made to address inequalities, but he claimed that trust was a barrier.
"Many people from minority ethnic communities will tell you that despite having information that should be helpful to them coming out of their ears and the ears of the authorities, nothing is done to help them.
"So we need to build that level of trust so that people feel and know that if you ask them for health information, you're going to use it in a way that will benefit them, not one that will hurt them. ".
When he first experienced a shoulder ache in 2018, Spike was a 49-year-old father of two who was healthy and active.
After a scan that revealed "abnormalities," he was shocked to be instructed to proceed right away to A&E for additional testing.
The Cardiff interior architect was formally identified as having stage 4 cancer after five days of tests and blood checks. .
I told them, "I believe you have the wrong person. ".
While the cancer had begun in his lung, it had moved from there to his brain, where it now hurt in his shoulder.
Initially, surgery was intended to attempt to access the tumor, but during a meeting of experts, consultant clinical oncologist Dr. Jason Lester realized that Spike, a nonsmoker, may actually have a rare gene mutation called ALK.
It indicated that Dr. Lester "was very hopeful" that a tablet would be better for Spike than a surgery to try to remove as much of the tumor as possible.
He claimed that compared to "very low incidence" in white people, ALK mutations in lung cancer were extremely rare, occurring more frequently in Asian people.
There is very little published data on it in patients of color. But given the evidence, it appears to occur even less frequently in black patients than in white patients, making it more likely to go unnoticed. ".
Spike's symptoms grew worse while he awaited the results of the genetic test, the cancer spread to his spine, kidneys, and lymph nodes, and he gained weight as a result of the steroids he had to take.
"My legs in particular on my right side were becoming limp. I was constantly out of breath, my arm started to claw, and I was unable to move very far.
"I just tried to maintain my sanity by paying attention to my breathing. I was broken and only trying to put myself back together. ".
He was prescribed Alectinib once the ALK gene mutation was discovered.
I felt different in a matter of days, he claimed. After several months, the brain tumor had more than halved, and no cancer was present in any other organs.
I'm now starting to prosper. which is far from being able to survive. ".
His health has since improved to the point where he is once again able to play and coach his son's under-11 football team.
Dr. Lester, a man of mixed races, agrees that more accurate ethnicity data is needed.
It always bothered him that there wasn't much information on black people in the cancer research that was published, he said.
When it comes to lung cancer patients, the vast majority are either white or Asian, according to large studies that have been conducted. In those clinical trials, black people make up a very small percentage.
As a result of the poor quality of available data, it is almost necessary to speculate about the types of cancers that may be present and how patients of color may react to treatment.
All of it is speculation, but it shouldn't be. ".
According to a statement from the Welsh government, "We are working with partners to identify barriers and find solutions to improve data collected at point of contact, including through our race disparity evidence unit, so more data is captured and available on ethnicity.
Also being developed are clearer guidelines and expectations for how diversity needs to be taken into account during the planning and execution of health research studies. This will have an impact on treatments provided.
. "
