Cancer Survivor: ‘I Wish I Could Have Spoken to a Pharmacist,’ Received More Pain Management Support

Pharmacy Times® interviewed Sarah McDonald, a cancer survivor and author of the book The Cancer Channel, about her experience battling adenoid cystic carcinoma and stage 3 breast cancer simultaneously while also watching her father go through cancer treatment as well. Her father did not survive his battle with cancer, and McDonald shares how that impacted her perspective on her own treatment process, as well as how surviving the experience helped to change her perspective on life and potential role in health care advocacy for patients with cancer.

Pharmacy Times®: Would you mind sharing a bit about your diagnosis process and treatment journey with the two types of cancers?

Sarah McDonald: So I first discovered a lump in the floor of my mouth after a dental deep cleaning. I called the dentist and said, ‘Hey, I found a lump. Is it possible that I have an infection?’ And she called me immediately back in and said, ‘It could be anywhere from an infection for which I will prescribe antibiotics to there's a super, super rare form of cancer. I'm sure that's not it.’ And of course, that's what it turned out to be.

After many trips to a number of different specialized specialists, I was diagnosed with adenoid cystic carcinoma, which is salivary gland cancer. That was cancer diagnosed as one number one. And I was post-surgery from the salivary gland cancer and was meeting with my head and neck doctor and said with him, ‘Okay, well, what are the next treatments we're going to do now that we've done surgery to remove the tumor.’ And he and I were discussing radiation, when I raised the issue of a lump that was in my breast. And I said, ‘I found this lump 6 years ago. And it was biopsied at a different medical center. And I was told that it was nothing. But I'm just wondering, since I have the adenoid cystic carcinoma, I'm wondering, is it possible that this is metastatic cancer in my breast,’ and he said, ‘Sarah, you already have one of the rarest forms of cancer, this is there is and when it metastasizes it goes to either your lungs or your brain. So, if you have a lump in your breast, that would be if it was cancer, that would be a separate primary source cancer. And frankly, we don't see two primary source cancers and someone's so young, so but if it'll make you feel better, you should pursue it.’ So feeling very much like a hypochondriac, I did pursue it and got the unfortunate news that at that point, it was stage 3 breast cancer. So those were the 2 diagnoses.

I was immediately put into concurrent treatment. So I was doing radiation for the adenoid cystic carcinoma, and I was doing chemotherapy for the invasive ductal carcinoma. And as those of you listening probably know that chemo actually increases or intensifies radiation. So by week 2 of my radiation to my mouth, the technicians were seeing side effects that they normally see 2 weeks post radiation. So in week 2, I already had bleeding in my mouth, and was starting to develop sores. And as you can imagine, as the week's progressed, and I continued to do radiation, occasionally, the oncologist would make the decision that we would skip chemo for a week because it did simply become too toxic in my mouth. But I did continue radiation and chemo concurrently for a number of weeks. And what became our big challenge was pain management for me.

Pharmacy Times®: Your father was also battling cancer as well. Did your treatment journeys overlap, and how did that impact your perspective on the treatment process?

McDonald: Yeah, so while I had been diagnosed with both cancers, my father's prostate cancer returned and at that point was metastatic prostate cancer. And he, for his initial prostate treatment, had received radiation he did not receive. He didn't he made the choice not to have surgery, when he was first diagnosed with prostate cancer, because he felt it was going to be too invasive and the risk of side effects were too great. So he chose radiation initially, when his cancer came back, it had metastasized to his bones. And his doctor was suggesting that he start chemotherapy, and I was already going through chemotherapy for my breast cancer. And I was really, really public at this point about having 2 cancers. I was keeping a blog and my directive to my doctors was I want to be as aggressive as possible with both of these cancers because I don't want them to come back. So I believe I have a high threshold of pain. Let's push it. And let's just get rid of the cancer and let's be as aggressive as possible.

My father, in sharp contrast, was very private about his cancer. He hadn't told people outside of our immediate family when he was first diagnosed 10 years earlier. And certainly when it had become metastatic, he had no interest in sharing with people that he had cancer. So when his doctor raised the question of chemotherapy, my father actually said no. And his fear was that he would lose his hair, that it would be a side effect, and that it would become very obvious to people that he had cancer. So for him, he felt chemo therapy was not a good option, because optically or visually, it would signal to everyone that he had cancer.

So for many weeks, actually, he declined both to his doctor, and to his daughter, me, who are insisting that he should really start in on chemotherapy. And, after several weeks, a couple of months, he finally did agree, because the cancer was progressing—he did agree to go on chemotherapy. But I think at that point, we had probably waited too long. And he did not react well, he was not in shape. And obviously, he was on a different chemotherapy than I was. But he was very, very sick, had a lot of nausea, a lot of pain. And so his experience with chemotherapy was pretty brutal. And ultimately, he lost his battle with his prostate cancer. And I in sharp contrast, experienced hair loss, certainly, and some side effects, but very little nausea, some mild headaches, but I was not having the same experience he was, and my body was actually reacting super well to the chemotherapy, so that truly at the end of my chemotherapy, and my 2 surgeries, and then radiation, I had no evidence of disease. And as I stated, he had lost his battle.

Pharmacy Times®: Did pharmacists have a role in your treatment process?

McDonald: So I didn't actually speak with any pharmacist during my treatment. My conversations about my medications were through my oncologist. And certainly, she was sharing with me, ‘Hey, you need to take all of the medications that the pharmacists are giving you.’ And when I was preparing for chemo, that included, taking my anti-nausea medications, and all of that was terrific and worked well. For me, everything related to the chemo related to the pain that I was experiencing in my mouth due to the intensified radiation—pain management was a big deal. But again, I spoke directly through my oncologist and her resident.

And they had me—I was taking opioids, it became really, really intense, and they put me on morphine. But I found I did not tolerate morphine well, and was quite sick from the morphine, I mean, nauseated and throwing up. So they took me back off that and put me back on the opioids, which I was really worried about taking the opioids, because certainly in the news, we're hearing a lot about the opioid epidemic. And I said to my oncologist, ‘Gosh, do I really need to take these because I'm what if I become addicted,’ and she said, ‘With the level of pain you're in, we really need to manage that. And if you do become addicted, we'll deal with it. We'll deal with that then. But let's get you cured of this cancer first.’ And, I had no interest in the opioids whatsoever. I did take them merely for pain. But I had no interest in them post that.

I was also prescribed a mouthwash by Stanford, that was meant to numb my mouth. I was also given some numbing gel that I could place in my mouth. Neither of which had any sort of lasting effect. It would give me a moment of relief. But really didn't dull the pain. And that was part of my confusion as a patient. I didn't understand that the pain medications I was being given wouldn't remove the pain. My experience previously had been using [ibuprofen (Advil; Pfizer)]. And when I had a headache, I would take [ibuprofen] and the headache would go away. So my expectations of the pain medication were, if I took the morphine, my pain would be alleviated, it would be eradicated, it would be removed. And none of that happened. I was in constant pain for a number of months.

In fact, there was one 3-week period, which I like to refer to as the apex of the pain, where actually I didn't eat at all. And I was surprised I didn't know that a body could withstand not eating for 3 weeks, but that helped get me through it. There was just no way I could put food into my mouth, I had over 20 sores, like canker sores in my mouth, and my mouth felt like it was sunburned. So anyway, I didn't eat for 3 weeks, and the pain medication dulled the pain but didn't remove it.

Pharmacy Times®: How might a pharmacist have helped to address some of those challenges?

McDonald: It would have been helpful to sit down with somebody on the pharmacy team to talk about what my options were. I didn't understand the full range of options for pain medication, nor did I understand the role of pain medication. It would have been helpful maybe to understand that we weren't looking for pain alleviation, we were looking for pain dulling, just so I could kind of set my expectations that way. And if there had been other options that the pharmacist knew of that could help me, it would have been good to know that.

I worked primarily through the resident—I was at a learning hospital, so he was learning. And neither of us—we were both kind of new to it. I kept trying to explain to him that I was truly at a 9 or 10 on the 10-point scale. And he kept telling me, ‘Well, let's see, let's do another week at this level and see how we go.’ And I think I would have appreciated talking to a pharmacist who maybe had more experience and understood pain a little bit more and could be—I don't know—could have helped me sort through it with that maybe I would have felt less pain.

Pharmacy Times®: How did your care team communicate with you around treatment plans, goals, potential side effects, and things of that nature?

McDonald: Absolutely. Yeah, I was meeting with my oncologist, 1 to 2 times a week, I would come in for to discuss the treatment. And I would often meet with the doctor prior to going for chemotherapy. And I was I was really set up in the treatment was a weekly chemotherapy cycle. And so I would come in do blood work, go speak with the oncologist, she would make the decision based upon my blood work and the toxicity of my mouth, whether we would continue with chemotherapy that day or not. And so it was all primarily through the oncologist or the resident in an office visit.

Pharmacy Times®: Do you have any thoughts from a patient perspective on what you needed most from health care professionals during your treatment journey with these 2 cancers?

McDonald: Yeah, I needed people to be very open and honest with me about what was going on. I appreciated they asked me for my opinion. And they spent a lot of time asking me how I was doing physically, but also emotionally and mentally. And I thought that was tremendous. The approach at Stanford was to care for the whole person. And there wasn't a visit that I had with my oncologist that she wouldn't walk over to me, look me straight in the eyes and say, ‘Sarah, how are you doing?’ And I so appreciated that I felt like I was being cared for by another human being who honestly cared about the emotional struggles that I was experiencing.

Pharmacy Times®: Any closing thoughts?

McDonald: Gosh, I would have loved to have had access to oncology pharmacists, I would have loved. I know that I went through a training session in orientation to my chemotherapy that was moderated or facilitated by an oncology nurse. That was super helpful, but boy, I would have loved to have had an, an oncology called pharmacist in the room, explained to me some of the medications they would be giving me to prep me for oncology, I mean for chemotherapy, and I would also have appreciated when I was having the side effects, I would have appreciated having a consultation with a pharmacist, and I frankly I didn't know to ask, so hadn't been offered. That would have been really helpful to me on my journey.