An interview with NRG Patient Advocate Committee Member Julie Montás
Julie Montás, a two-time Stage 4 colon cancer survivor, has been cancer-free since 2012. She shares her story to highlight self-advocacy's importance and provides hope to others. Julie volunteers with the American Cancer Society's Road to Recovery program, driving patients to treatments, and serves as a cancer mentor with the Cancer Hope Network. Her customer service background fuels her passion for person-centered care in healthcare.
Question 1: For starters, give us a little background into your cancer diagnosis and what inspired you to pursue a role in patient advocacy.
Answer 1:
At the time of my diagnosis, I was feeling fine. I had noticed blood in my stool, which was odd for me. I had never had hemorrhoids or bowel issues. This happened to coincide with my upcoming annual physical. At the beginning of each appointment my nurse practitioner would always begin the appointment by asking, “Before we get started is there anything new going on with your body this year that's different than when I saw you last year?” I was having an internal struggle that seemed to take forever to answer. "Julie, say something!" and "Nah, it’s probably no big deal". Speaking up won out. I said, “Well, I saw blood in my stool and that’s never happened before, but I feel fine.” She mentioned that it was probably nothing, maybe an internal fissure, but she handed me a card at the end of the appointment and suggested we play it safe and schedule an appointment for a colonoscopy. I went to that colonoscopy appointment and that’s when everything took off.
I was diagnosed in 2008 with stage 4 colon cancer. I was 45 at the time, so I wasn’t even at the age to be screened, which was 50. It had metastasized to my liver, which had a rather large tumor. I had chemotherapy, liver surgery, more chemo, colon surgery, then more chemo. In February of 2009, I was pronounced cancer free. A routine scan in December 2009 revealed that the cancer had come back, to the liver again. I immediately had surgery, followed by 12 more rounds of chemo. I finished chemo in the summer of 2010, but had cat scans every three months, due to my cancer being diagnosed at such a late stage.
In 2011, during one of those routine scans I had the tiniest "something" on my right lung. My oncologist said that it was hard to determine what it was. Apparently, a lot of people have lung nodules, but the average person wouldn’t know this, as they do not get scans of their lungs. He said that we would just keep an eye on it. I went for my next scan and the lung spot was still there. And the next scan, the spot was still there. In 2012, during another regular scan, it was still there. I finally said, “I want that out. I know it’s not growing and we’re watching it, but I don't like the emotional toll this is taking on me. I want lung surgery to remove it.” The biopsied specimen showed that it was colon cancer metastases.
Advocating for myself comes easy, but my experience made me think of those that might not be as outspoken, assertive, inquisitive, and assume they should just do what they're told. What about those who might not speak English well or those that believe doctors should never be questioned and are always right? I shudder to think about what my outcome might have been if a different doctor had performed my physical and was less concerned about my one symptom. I am forever grateful to my nurse practitioner, who I attribute to saving my life with her conservative approach. I want to encourage others to make sure their voices are heard, their questions welcomed, and to be an active participant in their own health care.
Question 2: What sort of physical, mental, and emotional challenges were you met with from the point of diagnosis, through treatment, and even after as a survivor?
Answer 2:
In the grand scheme of things, I will always call my situation the best of the worst. Stage 4 is obviously not a good diagnosis, but everything that transpired after my diagnosis went well...surgeries, chemo, healing. Controlling my nausea was a physical challenge for some time. I was put on a few different anti-nausea medications, but nothing seemed to work until I was given a free sample by one of my chemo nurses. "Why haven't I heard about this?", I asked her. "Because it's about $100 per pill", she said. When I asked my oncologist why I wasn't prescribed this particular medication initially, as opposed to the other medications that did not work for me, he confirmed that because of insurance requirements they must first try the cheaper medications. It is only if those medications do not work, that the oncologist can request the more expensive/effective medication. I made it very clear to him how I felt about this and he immediately prescribed the "golden pill" going forward. You can't know what you don't know, but once you do know you have an obligation to advocate for others that can benefit from your knowledge.
Mentally it was very tough because at the time I had one child in college, one in high school, and one in middle school. I was so concerned with everyone else being okay and I didn’t want people to worry about me. I couldn’t have those tough, dark conversations with anyone close to me because they were just that - too close to me. This is why I work with the Cancer Hope Network, because that is exactly what they do. They pair a newly diagnosed cancer patient that has the exact same type of cancer, went through the same treatments, had some of the same issues going on in their life, etc... with someone else who’s been there. If I had had that while going through my cancer experience, I would’ve been much better off emotionally.
Question 3: We hear a lot about the importance of having a strong support system during this journey. In what ways did the many supporters around you help you through the harder times along the way?
Answer 3:
I had lots of people offering to bring food, spend time with my kids when I wasn't feeling well, and there was always someone with me during my chemo and doctor appointments. I had a really strong support system. However, the loss of income weighed heavy on my mind. I was diagnosed during the financial crisis. Ironically, I had alot of financial support. I missed a substantial amount of work, due to chemo and surgeries. My family and friends organized fundraisers. Additionally, the company I worked for at the time (Hanna Andersson) reinstated an employee benefit that had been discontinued years previously. Once HR found out about my diagnosis, a companywide email was sent, announcing that employees were allowed to donate/bank their vacation hours for use by "other employees in need". That email was sent out on a Friday. By the following Monday there were so many employees trying to donate their (hard earned!) hours to me, that the system crashed. I would have to use several of those donated hours before more could be added. While many companies might "do the right thing" legally, this spoke volumes to the ethical responsibility they felt they had to take care of their own. I never experienced any loss of income during my cancer experiences, thanks to the kindness and generosity of my coworkers.
Question 4: What role did your healthcare team play in your support on your journey? In what ways could they have improved how they approached your AND/OR in what ways did they positively impact you during your treatment?
Answer 4:
All of my surgeons, chemo nurses, and oncologist were my biggest cheerleaders. From the get-go they had positive attitudes, despite the late-stage diagnosis. I specifically remember diagnosis day when the colon surgeon tactfully delivered the devastating news. He exuded confidence without cockiness. He was direct, honest, and didn't shy away from having the hard conversation. At the end of my appointment he looked me square in the eye and said, "Julie, we are going to fight this with everything we've got!" I walked out of that appointment feeling empowered. Why? Because he said "we", which meant he was focused on beating this. "We" could beat this together. Everyone on my healthcare team welcomed my comments, concerns, and questions. I am very inquisitive and made sure to let them all know that I intended to be an active participant in my healthcare. They never took offense. In fact, they welcomed it. What a stellar example of how the healthcare system should function!
Question 5: What advice do you have for healthcare workers as they navigate their patients’ treatment plans, approach hard conversations, and ultimately care for their patients?
Answer 5:
Every patient is unique, so they should be treated as such. Make them feel valued and heard. Encourage them to be part of the process by telling them you invite and welcome any questions and concerns, and that they should never fear speaking their mind. Sometimes it's just needing that permission that helps the patient feel at ease. A cancer diagnosis can be pretty scary, but letting the patient know that you're in it with them, can be so helpful and comforting. Also, you don’t have to sugarcoat anything, but positivity also goes a long way. I speak with many patients through the Cancer Hope Network whose doctors essentially have told them there was nothing that could be done or to get their affairs in order. I tell them they should go elsewhere because that may not be true in the end. Statistically, I should’ve been gone 11 years ago. So when you are starting that conversation with that stage 4 patient, make it a point to let them know you will do everything you can. I’m not saying the outcome will be the same as mine, but hope is huge. Do not let your patients lose hope. Sometimes that's all they've got.
Question 6: What advice do you have for others who may be struggling with a cancer diagnosis or currently facing treatment?
Answer 6:
Be an active participant in the process...knowledge is power. Make sure you have faith and trust in your medical team and look elsewhere if you don't. They are there to serve you, not the other way around. Always focus on possibilities, not probabilities and don't pay attention to statistics, they're just numbers. When I was diagnosed the 5-year survival rate was 6%. Someone's gotta beat the odds, so it might as well be you!