Local educator battles rare kidney cancer, health care system

RIO RANCHO — Renal Medullary Carcinoma (RMC), a rare form of kidney cancer, is diagnosed in about 1% of people with kidney cancer. Melissa Fernandez, a Rio Rancho Public Schools employee and longtime resident of the city, found out last year that she is part of that 1%.

For Fernandez, the news was a roller coaster of emotions.

“I was diagnosed incorrectly first — but my first diagnosis was also very rare — because they’re cousins. So fear, of course, panic,” she said of her reaction to the news.

She added that when she found out, she was alone.

“I was actually in the hospital because, after the surgery, I had poked a little hole in my lung,” she said. “So I had to go back into the hospital and I was waiting for my X-ray result ... All of a sudden, my pathology popped up, and I looked at it and you see ‘stage four,’ and you see the name of it and then, of course, I’m not going to not Google what it is. I was alone at the time and just cried.”

What started the whole ordeal of discovering her diagnosis was blood in her urine.

“So, it was the end of March (2024), our spring break, and I was visiting my daughter. I went to the bathroom, and there’s blood in my urine. ... Then the next day there was still blood; I was like, ‘Oh that’s not normal.’ So I flew back to Albuquerque, and when Monday came, there was still blood in my urine. I went ahead and made an appointment right away. Easy enough I got in. She was like, ‘It’s probably just a UTI,’” Fernandez said.

“We treated it for UTI, and it went away for a little bit and then it came back. I went back probably like a week, two weeks later. ... There’s times along the way where I kind of kicked myself that I didn’t treat it with the urgency I should have. ... I got my CT scan at the beginning of May, and it came back (showing) a solid mass on my kidney,” she said.

She said because there is a shortage of specialists in New Mexico, she didn’t want to go through waiting for an answer.

“And my specialist’s reaction was, even though I didn’t see him, his message was like, ‘I don’t know anything about this. I’m going to send you over to an oncologist.’ He didn’t even call and tell me himself,” she said.

Think New Mexico, a nonprofit think tank, made it a priority to look into the general health care worker shortage during this year’s legislative session, referencing the aging physicians who have been in the practice a long time, saying by 2030 about 40% of doctors will retire, including physicians working in oncology.

There are several doctors who treat kidney cancer in New Mexico at various hospitals, including the University of New Mexico, Lovelace and Presbyterian. However, very few are able to deal with Fernandez’s type. The practice of treating RMC is about as rare as the condition itself.

Despite her own anxiety and fear, Fernandez says the hardest part was telling her family about it.

“I didn’t even tell my dad and my husband first day because they’ve been so scared. We’d been so worried from a hospital visit. I just felt like they needed one night of peace being at home, kind of not being worried. Telling them and telling the kids is probably the hardest thing I’ve ever had to do,” Fernandez said.

“My dad, I watched him go through the seven stages, like disbelief, anger, bargaining, just within a matter of 20 minutes. He’s like, ‘That can’t be right. Why do you think that? That’s got to be wrong. You haven’t talked to a doctor,’” she said.

She said the rest of her family was more subtle but that it was like watching them go through the stages of grief, too.

“I told one friend, and we were in the conversation for about 20 minutes. And you can all of a sudden see it like the reality hit her,” she said.

The added layer of the cancer’s rare nature just made it even more scary.

“The initial diagnosis was collecting duct carcinoma, which puts me in the 1% of all kidney cancers diagnosed, and then with renal medullary carcinoma, I moved up to half a percent of all kidney cancers diagnosed,” she said. “The news is worse. I think we were already prepared for it to be pretty bad. So, I think by the time we knew it was RMC, at least we knew that there was a specialist.”

Fernandez says she is an outlier when it comes to RMC.

According to the MD Anderson Cancer Center, RMC is usually diagnosed in young Black people or people descended from certain ethnicities. Fernandez is neither Black nor young.

However, Fernandez does have a trait that’s identified as a direct link to RMC.

Sickle cell trait and similar blood mutations are often found in people that have been diagnosed with RMC. The trait usually doesn’t present any symptoms, and people who have the trait usually live normal lives.

Fernandez said she had an idea about the sickle cell before her cancer diagnosis but got pushback from her first doctor when she suggested it.

Her problems didn’t end there.

“So at that point, I called around, and luckily, I was able to get into Lovelace the very next day. The first urologist I saw, for some reason, they hadn’t gotten the report on my images. They said, ‘Well, from reading your report, I’m fairly certain that yes, it’s cancerous. Yes, we’re going to have to remove it,’” Fernandez said, noting the doctor continued to give information as an afterthought when leaving the room.

Scans had already looked at her pelvic area, but the doctor wanted scans of her chest to see if the cancer had spread anywhere else. Her next appointment wasn’t for another month, but she continued to call to see if she might get in earlier.

“We go in and he says, ‘Yes, I’ve seen the scans. Yes, I can confirm that you have cancer. I think you need to have the whole thing removed. We know we won’t know for sure the pathology until after we take it out,’” she said.

The doctor didn’t recommend a biopsy because cancer cells can seed themselves in other parts of the body when that happens. They also told Fernandez that they weren’t the type of surgeon that can do her surgery and would recommend her to the right person. She said she became frustrated because the doctor wasn’t clear about her cancer.

“I don’t think he looked at my scans. He never sat with me and showed me my own scans. Like you can see them in your chart but you don’t know what you’re looking at, right? So, my first person was terrible,” she said.

Her second doctor, she says, was much better and actually sat with her to go over her scans.

“They talked about the risks of surgery versus the risks of not (doing it). At this point in time, I’d done a lot of Google research. So I have my Google MD. I did know that renal medullary carcinoma was a thing and I knew that my sickle cell trait made it such that I might be someone who had it. I don’t meet a lot of the criteria for sickle cell traits. I’m not young, I’m not Black, and I’m not an athlete,” she said.

Her second doctor didn’t think sickle cell was a possibility. However, after her kidney was removed and the pathology report came back, it showed that the cancer was actually RMC and that she did have those sickle cell traits.

By that time, Fernandez had already applied to MD Anderson for her treatment but hadn’t been qualified because the cancer hadn’t been confirmed. She retracted her first application to see what would happen with Lovelace.

“Once I had the pathology report and I knew it was cancerous and I knew it was a rare cancer, I called MD Anderson,” she said.

This time, she met all the requirements and was told she’d get a call back within 24-48 hours.

“I got a call back within two hours for an appointment a month later. So, even then it’s brutal. But I knew that’s where I needed to be. I no longer had any trust in Lovelace or UNM really,” she said.

At MD Anderson, based in Texas, Fernandez started her chemotherapy. Later on, which she was later able to move to New Mexico. However, Fernandez suffered a setback as cancer cells in her pelvic region pushed her bone into her pelvis, causing it to break. She is in a wheelchair because of it.

Her next step is to see if the chemo is working or if the cancer has continued to spread. She did get good news that her cancer proteins were going down.

Now, Fernandez wants to help her doctor, Pavlos Msaouel, a medical oncologist and researcher at MD Anderson Cancer Center and renal medullary carcinoma expert, spread the word on how to catch this type of cancer in its early stages.

Msaouel, according to the MD Anderson website, has clinical interests in the treatment of patients with renal cell and urothelial carcinomas, with a particular emphasis on rare variants such as RMC. Fernandez was told that he was the best person for her treatment.

He has done extensive research on RMC and its prerequisite markers, but a lot of his recent research hasn’t made it into the medical community yet.

“Dr. Msaouel says research, once it’s published, still takes another couple of years to make it into mainstream medicine. So, even though the research and the information is out there, it’s going to take a while to get out there. That’s where I’m trying to come in and, at least in the Albuquerque, New Mexico, area, make doctors aware that this is out there,” Fernandez said.

She also asks that people who may have sickle cell to double check with their doctor. And, she said, if they have blood in their urine to have it checked beyond a CT scan to look for possible tumors.