‘This Isn’t OK’: Mucosal Melanoma Survivor Talks Self-Advocacy

Throughout her cancer journey, vaginal mucosal melanoma survivor J.B. Ward was her own best advocate, never taking no for an answer as she sought treatment.

“I had to remind myself that these (doctors) are humans and that they are doing the best they can with the information they have,” she told CURE®. “But humans are not perfect, just like I'm not perfect. And sometimes you have to — if something doesn't feel right or if you have questions that don't seem to be answered or anything at all — feel comfortable asking questions, feel comfortable getting other opinions. And if you have a provider that is not interested in second opinions, is not interested in hearing other people's opinions, then that might be a red flag, that might be a reason to seek other opinions and transfer your care.

“Because, especially with a rare melanoma, especially with a rare cancer, you have to be willing to go outside the box, and you really need a provider who's also willing to go outside the box and to listen to you. “

Mucosal melanoma, unlike the majority of melanoma cases, develops internally in mucus membranes lining parts of the body, according to Memorial Sloan Kettering Cancer Center, which noted that 1% of all melanomas are mucosal melanomas.

When Ward received her diagnosis, she said, her life was in the midst of a “huge upward swing.” She had recently graduated from grad school and was the married mother of a son who hadn’t yet turned 1 when she first began experiencing symptoms. She and her family had recently moved, but a phone call to her former OB-GYN’s office saw her concerns downplayed.

“They said, ‘(It) sounds a lot like bladder prolapse, which is very common after giving birth, and, you know, just do some Kegel exercises, it's all good,’” Ward recalled. “So, I was just going on that assumption. Based on the nurse line phone call, I don't feel that they had any real awareness to be concerned about what I was describing, and they just assumed it was sort of the best-case scenario.

Months passed until Ward was able to be seen by a new OB-GYN who assumed she was dealing with a cyst and opted to wait a few months before performing a biopsy “after a little bit more persistence” on Ward’s part.

“Sure enough, when the biopsy came back my new OB-GYN was so floored and surprised by it that she called me and had me come into her office after-hours because she wanted to tell us immediately what was happening,” Ward said. “And she had scrambled to do some research, to call other providers that had ever seen this before, such a rare melanoma.

“And even as she was telling me what the biopsy found and we were kind of talking through how this could have happened, she still seemed just bewildered. I'm young (and) this sort of thing, she's never seen it before. And the whole beginning of the diagnosis was just a lot of scrambling, a lot of calls to other centers that may have seen this before, just a lot of question marks, and it was just a whirlwind of confusion. And even my providers were caught up in that whirlwind. So, it was a little bit disorienting to have the people who were trying to take care of you really not even have their own sense of direction about it.”

Ward, who eventually consulted with the Mayo Clinic and sought care at The University of Texas MD Anderson Cancer Center, has been cancer-free for nearly six years following a treatment process that included surgery, biochemotherapy, immunotherapy and intraoperative radiation therapy.

She is now a public speaker and advocate, appearing at events such as the Melanoma Research Alliance’s 2022 Scientific Retreat and the 2022 MRA Melanoma Exchange Patient and Advocate Forum.

“If I can advocate for others who are in that process, who are dealing with the day-to-day struggles of trying to self-advocate and take care of themselves or others, if maybe they're a caregiver for someone who is going through this, I have the time and I have the energy now to advocate for other people,” she said. “And I feel a responsibility to do so. I also feel that because I faced so many unknowns and questions in the beginning with my diagnosis and my treatment, if the awareness were there then maybe I wouldn't have had to deal with that. And so, my speaking out publicly, my advocacy work, is really partly to get awareness out there that this is even a thing.”

Transcript

My whole process, (when) I started out they did remove everything with surgery, the vaginal tumor was gone, and they couldn't find anything. What we decided to do was give a try to kind of an old treatment that they were kind of like, “Well, why not? If it works, great. If it delays things until we have more options, great.” So, I went to MD Anderson and did bio chemotherapy. I don't know if it's used much anymore. But it was a very rigorous treatment, but it allowed me to have the backup option of immunotherapy if I needed it. That treatment was tough. And then it recurred. After I finished that treatment regimen, which was three months, I wanted to immediately have scans and they were a little bit hesitant. They were like, “You know, you just finished this, let's delay,” and I was like, “No, no, no, I really want to be aggressive about this, because you're telling me this is an aggressive cancer, you're telling me this treatment most likely won't work. We've got to do a scan.” So they did a scan right afterwards, a few of my lymph nodes were enlarged and questionable. They're like, “Let's just wait and see what happens to them.” I said, “No, let's biopsy them, I really want to know what's happening.” So, they did, they brought me back in to biopsy one of the lymph nodes. And sure enough, it had recurred. …

We decided to do immunotherapy. And that worked, it started to reduce the size of the lymph nodes that were showing up, but the toxicity and side effects that occurred were significant. And so, my local oncologist who I was still seeing to get the treatments, said, “We can't give this to you anymore because of the toxicities.” So at that point, really what I was thinking of as my only option was taken away from me. So that was another point in the whole process of this where I had to say, “No, I can't take that for an answer. You're telling me no.”

So, I ended up calling back the larger cancer center that I'd been to before. And they said, “You know what? We can actually, you can continue this, but we're going to have to balance it out with lots of labs and some steroids. And we'll figure this out.” And I also got another opinion at that point, too. So that process involved a lot of checking with other people, because there, again, wasn't really a consensus or they didn't really know exactly the best path, especially the local place where they definitely hadn't seen this before. So, I was able to do it with that and kind of manage it a little bit here and there with steroids, tapering and then some of the treatments and then labs and all of that.

Ultimately, I did have stable disease, other than one of the lymph nodes continued to swell a little bit. And, again, at that point, I was like, “This isn't OK.” So, I consulted with Mayo Clinic, and then they had suggested doing something that had never really been done before, and I brought that back to the other center, and they said sure, so as part of a trial we did a surgery that did intraoperative radiation. So, the surgery had, I think, four different specialists on hand and available to remove what was there (and) use intraoperative radiation. And from that point, I have been clear. There have been some scans with questions, because (with) PET scans there are going to be lots of false positives that come up when there's certain things happening in your body. So, there are things to follow up on. But since that time, which was over five years, almost six years ago now, there's been nothing come back. So, it's kind of surprised a lot of my providers, but again, nobody really knew quite what to expect.

This transcript has been edited for clarity.

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