August 12 2024
The Importance of Explaining Clinical Trials as an Option to Patients
NRG Oncology recently sat down with avid patient advocate and head and neck cancer survivor, Laurie Traynor, to discuss his cancer experience and the several lessons he learned before, during, and after his treatment.
Lawrence “Laurie” Traynor is a head and neck cancer survivor and patient advocate within the NRG Patient Advocate Committee and NRG Head and Neck Cancer Committee. He is a successful entrepreneur, executive, business owner, author, and is actively affiliated with Wake Forest School of Medicine, Sentrimed, the Head & Neck Cancer Alliance, Imerman Angels Cancer Support Community, Pinpoint Patient Recruiting, Support for People with Head and Neck Cancer (SPHONC), Jasper Health, and the Department of Defense. In addition to cancer advocacy, Laurie’s areas of expertise include mental health, ADHD, and alcohol use disorder addiction and recovery. Laurie was diagnosed with malignant neoplasm squamous cell carcinoma (head and neck cancer) in December 2020 at the age of 67. Cancer tried to end Laurie’s life, but Laurie met it with fortitude, growing knowledge, and good spirits.
Laurie kicked off the conversation with a very notable sentiment: “I remember with great clarity the radiation doctor inquiring about my interest in terms of getting involved with a clinical trial, and there was no explanation of what a clinical trial even was. Had this person taken the time, been a little patient, and explained in layman’s terms… if it were just handled differently, I would’ve been much more open to at least exploring the opportunity as an alternative.”
The interview with Laurie touched on some great lessons learned and takeaways for both physicians providing for patients during cancer care as well as advice for patients who are experiencing the flooding emotions associated with cancer diagnosis and navigating the challenges of treatment and self-advocacy.
We appreciate Laurie’s willingness to share his story and insights with NRG Oncology.
Can you explain the moments that lead to your cancer diagnosis and how it was discovered?
I’m going to use a word, and the word is asymptomatic. I think so many of us are just so caught completely by surprise because we feel great. It was happenstance that my diagnosis even occurred. I was at a routine cardiology exam and the doctor just happens to be a good friend of mine. Everything was great and he said, “your heart is terrific and we’ll see you again in a year.” As he was walking me out to schedule my next appointment, I tried to crack a joke and I said, “If I don’t stop snoring, my wife’s going to throw me out of the seventh story balcony window.” I thought he would laugh! He didn’t. Instead, he said, “Laurie, that is nothing to joke about. You don’t understand. Snoring could be a result of obstructive sleep apnea and that’s very serious. What we’re going to do, and we’re going to do it right away, is I’m going to have you get in touch with a sleep center so we can determine if in fact the diagnosis is obstructive sleep apnea.”
I met with the Executive Director of the sleep center for the sleep study, then I met with him again a couple of days later. He said, “Laurie, you’re a poster boy for sleep apnea. Now we need to explore what we can do to remedy this. I have an ear, nose, throat person that can explain to you something called a CPAP machine and any other alternatives available to remedy the sleep apnea.”
On a beautiful, summer afternoon, I drive to my appointment thinking we’re going to be talking about CPAP machines. I’m in there, sitting in the chair and the ear, nose, and throat (ENT) doctor comes in. He had stopped making eye contact with me and was staring at my neck. In the middle of a sentence, he interrupted me and said, “Mr. Traynor, do you have a sore throat?”. I said, “No, sir.” He added, “Well, do you have swollen glands?”. Again, I said no. I said, and as long as I live, I will never forget these words: “Doctor, you don’t understand. I’m as healthy as a horse. I’ve never even spent the night in a hospital. I was captain of the rugby club and I continue to work out on a daily basis.” He just kind of smiled and said “Ok, but we’re going to do a biopsy.” I thought it was going to be a waste of time. He comes back and said “Oh, by the way. You have stage three head and neck cancer, but we can’t do anything until we take your tonsils out.” On Christmas Eve I had my tonsils taken out. Then this was followed by meeting with my oncologist and putting together the treatment plan.
If I didn’t try to be funny and make that joke, I would’ve never known. I wasn’t a smoker and never even smoked.
How did you dive into your cancer treatment journey and what did you learn from the start?
I went into total denial [after the diagnosis]. I’m the kind of guy that if I’m driving down the highway and my check engine light comes on, most people might beeline to the nearest service station, whereas I’m going to Home Depot and buying duct tape to put over it. When I was first told, it was surreal, emotional, and overwhelming.
Because of this, one of the very first things that I learned was the importance of having a health or patient advocate with you for every meeting that you need to attend. What I don’t think researchers and clinicians understand is that often times, people who have just been diagnosed with cancer have their own life issues already going on, such as a predisposition to alcoholism and addiction or mental health related issues like co-dependency, OCD, or ADD. They are already dealing with something like this, then you add in like the news of cancer, it puts you in an absolute tailspin.
I hired a woman that was a two-time cancer survivor and medical professional to join me on each and every meeting. I did that because I’m old and I was diagnosed about 30 years ago with ADD. My memory is such that, if I have a meeting with a doctor, maybe I’ll retain 40% of the conversation. If someone cannot hire a professional or get help from a volunteer patient advocate, they could utilize an app called Abridge designed specifically for this purpose. The app allows patients to record the entire meeting and you can get a transcript of what was said. You can also highlight and search definitions for medical terminology the doctor might have used that you don’t understand in the transcript. I use this app all the time. When I start an appointment, I always say to the doctor, “Before you get started, I just wanted to let you know that it is extremely important to me that I have a complete understanding of this conversation and if there are any instructions that you give me, I need to follow them exactly the way they were intended. I have ADD, I’m old, and I with your permission would like to have a copy of this conversation using my app that records this.” I’ve only had one doctor ever turn down being recorded for this purpose.
What did I learn? Find a health advocate or help within the medical arena or download an app to be sure you have everything that you need.
What are the biggest challenges you faced and what would you tackle differently today?
I was a lousy cancer consumer, because I didn’t even want to know the answer to the questions, and I didn’t know the questions to ask. It is important just to ask even the most basic and simple questions. Even something as simple as “is it palliative?” or “is it curative?” when the diagnosis is made. I sense that oncologists could be a lot more upfront about things like side effects, specifically conventional and traditional radiation and chemotherapy. I had absolutely no idea what I was in for from the standpoint of different side effects, mostly from radiation. Had I been aware, it may have been a little easier to manage.
In all candor, the cancer for me was fine – it was the side effects that nearly killed me. I made a list of the post-cancer side effects, most of which are radiation related. If I had just asked the question, “In your experience, have there ever been any ramifications related to eyesight”, but I didn’t. As a result, it was impaired and I had cataract surgery. The surgery was botched, I ended up seeing double - the hits just kept on coming. In addition to eyesight, hearing issues including a chronic ringing in my ears, 50% of my taste – especially with head and neck cancer. There were issues with my gums, teeth, even saliva. I wish someone took the time to say, “you may experience some of these side effects,” so I could’ve been somewhat prepared.
I also cannot emphasize enough the importance of having a second, third, or maybe even fourth opinion. We just develop a wonderful relationship with our oncology people, our chemo people, our ENT, and radiation, and we wouldn’t think for a moment to question them. That’s just not the case. I wouldn’t do anything going forward if I didn’t have at least two opinions, perhaps three opinions, as to what the treatment would look like.
When I went in to visit with the oncologist, nothing was up for debate. We didn’t talk about any clinical trial alternatives or any natural alternatives. It was “Ok Mr. Traynor. We’re going to do 7 chemo treatments. We’re going to do 35 radiation treatments, and we’re going to do 35 steroid infusions. At no point did I even consider asking a question like, “why 35? Why not 25?”
Were you offered any form of supportive strategies for emotions during your treatment? If not, what strategies do you feel would be helpful (i.e. therapists, spiritual support, peer support groups)?
I thank God for a loving partner who acted like a caregiver. Another thing that people don’t think about, but the people that we love the most in life, we take it out on them when we’re suffering from something like cancer. It was just because of emotionally where we are. When I speak with cancer survivors, I say “let me speak to your partner” because I need them to know that you’re going to be behaving very differently from how you normally behave, and this is a result – it’s a side effect.
No one said anything about a support group, I didn’t even realize they existed. But it’s played such an important role in my recovery. In Chicago, there’s a group called the Imerman Angels. As an example, you call and they go in great detail to determine the exact type of cancer you have and, equipped with that knowledge, they pair you with an ‘angel’ or coach/mentor. I still on a weekly basis speak to my angel for three years now. It’s great because he had head and neck cancer, and he knows exactly what I’m going through or what I’d be up against. Unless someone has had personal, hands-on experience with cancer, they do not have a clue about what it’s like. Why would I confide or ask anyone for any advice unless they had first-hand knowledge and experience with what I’m going through?
What advice would you have for physicians?
Wouldn’t it be nice if you could sit with someone in the medical arena and not feel rushed? If there were situations where you can really develop relationships and someone can earn the space to learn more about competing things in your life such as alcoholism and depression? It would better help the understanding and direction of treatment. For example, if someone has a proclivity for addiction, the first thing they may do is provide pain killers without knowing this. It’s addressing the other surrounding, additional life issues.
Additionally, just being able to provide more education on the importance of clinical trials as it relates to a patient as an alternative. I can’t imagine being diagnosed right now with cancer and not asking a question such as “what role will artificial intelligence play in my treatment?”. But something like that is important to know. Giving patients enough details to allow them to ask their own questions and make their own choices. Additionally, information about integrative health approaches such as acupuncture or meditation that could be helpful in handing side effects as well as education on things to do to avoid cancer recurrence.