When Wayward Tumor, a lung cancer tumor located in my right supraclavicular node, began to grow after nearly five years of stability, decisions had to be made about a new treatment plan. I had to go off of the clinical trial I had enjoyed and that had kept all tumors stable for four years.
It was traumatic to go off of the trial. I only knew being in a trial. And, trust me, when you are in a trial, you are treated like a star! At least at my facility, all appointments are made for you. You have a researcher that takes an active part in your treatment, along with your doctor and nurses.
I didn’t even know to whom I turned for an appointment! I was very, very spoiled. And, I liked it!
I was only two treatments away from marking #100 when I had to quit the trial. I can’t tell you how much I was looking forward to celebrating my centennial treatment! That had been a milestone I had anticipated for many, many months. I was getting especially excited with the day coming in only two weeks!
But, the growing tumor meant that the immunotherapy was no longer working like it had been. One tumor, Wayward Tumor, had reconfigured itself and was outsmarting my immune system again. As much as I wanted to reach that 100th treatment, it made no sense to continue a treatment that wasn’t controlling an active tumor.
I have to tell you. I was heartbroken. Not so much because I had a tumor smarter than my immune system, but because I had dreamed about and already begun to celebrate that milestone 100th treatment. Strangely, I never thought past that particular treatment. I wasn’t looking forward to the 125th , the 110th, or really, even the 101st treatment. But, I was definitely greatly anticipating the 100th infusion of nivolumab, aka Opdivo.
As I described in “A Bump in the Road,” we considered several options for the new treatment. My oncologist first recommended a Phase 1 trial for a new immunotherapy. I was prepared for that, but the trial filled before I could meet all requirements. Next, he recommended I go on chemotherapy for a short while. He thought that giving my body a break from immunotherapy while we waited for another trial to become available would be a good plan.
Chemotherapy wasn’t an option I wanted to take. I had been there, done that … and I didn’t want to do it again. I had become spoiled to feeling great and enjoying my life while on Opdivo. No matter how many ways I considered it, I just couldn’t convince myself to go back to the point where I was throwing up, rolling on my bed in pain, too fatigued to walk 10 feet. So, against my doctor’s better judgment, I refused that plan of action.
Next, the doctor recommended that we just continue on with Opdivo. Ah!!! Maybe I would make treatment #100 after all!!!
But, no. I could not justify asking my insurance company to pay for a treatment that was allowing one tumor to grow. The fact that the growing tumor was in a lymph node and near my head convinced me even further that it was time to try something else. Cancer in lymph nodes can easily travel anywhere else in the body … and it was close to my brain. No, continuing on for a few months while we waited for another trial to open up just didn’t seem like a viable plan to me.
Advocating for Yourself
Now, I realize that I do not have a medical degree and I am not as smart as my oncologist is. I cannot determine the right treatment plan for anyone else. But, I am studied enough and know myself well enough to be able to help plan my own treatment. If I make a mistake, I am willing to own the consequences. But, I have to do what feels like the best course of action for me, regardless of what the professionals might recommend.
I attend a lot of conferences or patient summits or seminars … whatever name they go by … where we have experts come and speak with us. I am by no means the most learned patient around, but I do try to keep up with what’s going on in the field of lung cancer so that I am knowledgeable enough to be part of my own care team.
Here’s the thing. I have no ulterior motives except wanting to stay alive while maintaining the best possible quality of life. I don’t mind participating in clinical trials at all. In fact, I enjoy them. But, I don’t consider clinical trial participation the end all. I have no real motivation to be in a trial at this point except to (1) help advance science, but more selfishly, (2) to keep myself alive under the best possible circumstances.
Doctors, no matter how objective they try to be, may still be influenced a bit by their own interests. Some doctors may go the easy route – the tried and true route. Other doctors may wish to be so cutting edge that they fail to realize that on occasion traditional treatments are the best choice.
And, while doctors are quite learned, they are human. They may make mistakes. They may be overworked. They may have other factors influencing their decisions. They may feel more comfortable with certain treatments than others.
Patients owe it to themselves to be aware of what is happening in the world of cancer treatment. It could be their own life at stake sometime. Go to conferences, participate in online forums, monitor cancer-related websites. You don’t have to be an expert, but you need to have a working knowledge of possible treatment options.
When I decided that I wasn’t willing to subject myself nor my family to a return to chemo, I started doing some research on my own. I tapped into friends who could help me understand what was beyond my pay grade of understanding. And, I banked on information I had gained at a recent LUNGevity regional HOPE Summit when trying to decide just what I wanted to do next.
Considering the Options
I knew I didn’t want to go on a chemo regimen, but where did that leave me? What options were there?
From the LUNGevity conference, I knew that research is showing that combining radiation with immunotherapy is proving to be very effective. When I was first diagnosed, I was told radiation and surgery were not options available to me due to the number and placement of the tumors. But, immunotherapy had controlled the tumors in my lungs. Only the one Wayward Tumor was causing issues. And, it was in my neck. It seemed to me that radiation could be a very viable option.
I know that some people have had significant side effects from radiation, but I have always had a positive attitude about radiation. I am sure that stems from the fact that when my dad had it way back in the 1970s, he tolerated it quite well.
I also began to research other clinical trial options. While I love my medical facility and every single doctor I have seen within that system, my life was at stake. I don’t love them more than I love life. So, I went to ClinicalTrials.gov and started looking at options.
There weren’t a lot of open trials in Texas for which I seemed to qualify, but there was one that was really interesting to me. It combined a type of radiation therapy, gene therapy, and immunotherapy. It sounded perfect for me. Its only real drawback was that it was being conducted in Houston, 200 miles away.
Nevertheless, I sent a quick introduction email to the researcher to see if my case might be interesting to them. For the first time since learning that I didn’t get into the clinical trial that was recommended right after I was removed from the trial for nivolumab, I began to feel some hope. And, I felt like I was finally making some progress on finding a way to treat this cancer.
There were lots of other trials available, as well. Unfortunately, I didn’t know if I qualified for any of them because they were for specific tumor mutations. I had repeatedly requested that my new biopsy tissue be tested for mutations, but I had never heard back that it was being done. Having tumors tested is very, very important. If you happen to have certain mutations, specific drugs are available that work best on those types of tumors. You might never have to submit to chemotherapy. In general, targeted therapies are much more easily tolerated because they are designed to attack tumors, but not all living cells. Learn more about tumor testing here: Lung Cancer Tumor Testing (ALA).
Nevertheless, I wrote them down. I could ask my doctor or nurse practitioner about them at my upcoming visit. We were meeting to determine the next course of action.
After much discussion with my nurse practitioner (my doctor was out of town) about the various options, I learned several things:
- My tumors had been tested and I had none of the common mutations. So much for many of the trials that I thought might be options… I wasn’t eligible for them.
- Radiation could be an option. It hadn’t been previously considered by my medical oncologist or his staff, but it was something that could be explored further if I desired.
- There were not currently many options available to me at my facility. Some were coming, but they weren’t there yet.
Well, I don’t know about you, but when I KNOW I have a cancer growing in me, I want treatment sooner rather than later! I imagined that tumor was exploding in size. I don’t know if it was truly growing by leaps and bounds or if my mind was playing tricks on me, but I began to be able to feel it – both with my fingers on my neck and internally when I swallowed. My husband could see where it was on my neck. All of these were new developments since we learned it was growing again.
Right or wrong, in my mind or real, I felt the need to get something done and to get it done quickly. Waiting for any length of time felt almost like suicide. I decided I wanted to have radiation. I specifically wanted SBRT, or Stereotactic Body Radiation Therapy. I wanted this treatment because it was done over a very short period of time (at the time, I thought it was done only once). Some radiation treatments go on for weeks and weeks and weeks. The patient has to go for a treatment every week day.
My hospital is about 45 minutes from home. I didn’t want to make that daily drive any more frequently than absolutely necessary. I had quite the plan in my mind!!!
My awesome nurse practitioner agreed to send a referral to the radiation oncology clinic. She realized I would never rest until we at least explored whether or not I was a candidate for radiation. (I had never considered that I might not be qualified for the treatment I had decided upon!)
That same day, I got a call to set up an appointment with a radiation oncologist. And, I was able to get in to see him the very next day!
I got on the Internet and began to research the doctor as soon as I was given his name. And, I was elated by what I found. In his biography, he wrote,
I try to be direct and honest with my patients while at the same time balancing their need for hope. When patients ask me about lifespan, I honestly tell them that any patient can be the exception to the rule and every situation is different. I want them to have just as much hope for themselves as I have for them. (emphasis is mine)
Wow!!! This doctor was perfect for me. Upon meeting him, I quoted back his statement to him. And told him he had met his match for Hope in me. We were going to be a great team. I just felt it from the very beginning. I was also impressed that he realized and accepted that every single patient is unique. There is no need to start quoting statistics about lifespan. No doctor is God. And stats are meaningless on a personal level.
It is vital that you know and trust your doctor. If you do not feel comfortable with him or her, find another. If you don’t trust them, find another. If they won’t allow you to be part of the team making plans for your survival, find another. And, if they aren’t willing to work within your timetable, find another. (Some doctors let things go for way too long. Cancer doesn’t wait around. My friend Bud is a prime example. While his doctor waited around, his cancer was taking over his body. By the time something was finally done, it was too late. This is not the time to be patient. This is not the time not to make waves, if needed. You should feel a sense of urgency as should your medical team. I say again, cancer doesn’t wait around. Neither should you.)
I left our initial meeting with our radiation oncologist nearly floating on air. I loved him as much as I expected I would. From the beginning, I felt like I was talking to a friend. My husband was as comfortable with him as I was.
However, when I wrote to my medical oncologist to tell him how the meeting had gone, I came back down to earth. Radiation wasn’t the preferred treatment plan, in his opinion. Unfortunately, my doctor was out of town and I couldn’t actually discuss reasons with him.
I hated to do something that my medical oncologist didn’t approve of, but I was comfortable with going forward with radiation. Why would I want to walk around with a growing Wayward Tumor for one moment longer than I had to? Why wouldn’t I want to get radiation and obliterate that nasty thing? My attitude then and now was, “Let’s take care of this bothersome blip in the road and get back to living.”
I worried and fretted about going against what my medical oncologist recommended, but I never wavered from my belief that radiation was the right option. I continued on that road. I hoped then and continue to hope that I haven’t harmed my relationship with my medical oncologist. I love him. I trust him. But… I felt a deep conviction that radiation was the right path for me to take.
I left my initial consult with far more information than I had when I arrived. First, I learned that SBRT was not going to be an option for me. I was way over-simplifying the whole radiation thing!
First of all, SBRT isn’t done over one treatment, but over several. And, it consists of very high doses of radiation to get the job done quickly. My tumor was located in a spot where high doses of radiation could cause more damage than I was expecting.
Based on its location, the doctor had to be sure that he didn’t damage my esophagus or nearby nerves that controlled movement in my right arm and hand. Oh. I had no idea! In my mind, it was a simple task to direct the radiation rays at the tumor. Zap it. Be done. Laughing now at my simplistic thinking! It all seemed so easy the way I envisioned it.
In short, I wasn’t a candidate for the SBRT that I had decided I would get. But, I was a candidate for radiation. The doctor thought we could do 15 treatments. I would need to drive back and forth to the facility for three weeks. (It is funny the things that I dread the most. I was unconcerned about the treatments themselves. I dreaded having to make that boring drive over and over again. Priorities, right?)
The doctor thought it best that I wear a mask during treatment. I grimaced at the idea. He said he would think about whether we could do without the mask, but he felt like that was the best route. The mask keeps you immobile so that the radiation beams hit their target. There’s far less chance of damage to good tissue or organs.
We decided that I would return to the radiation center the following week. I would go through a process called Simulation which would prepare me for treatments. A firm decision, however, was not made on whether I would begin radiation right away or wait for awhile, in hopes of getting into another viable clinical trial.
In the Meantime
While all of these discussions are going on, I can feel the tumor in my neck. I don’t know if it was truly growing by leaps and bounds or if I was imagining it, but I could feel it. And, I was envisioning it becoming larger and larger and larger while we were waiting on a treatment plan. I’m not much of a worrier, but I do believe in taking action! The weeks that were passing with no treatments and no real plan were beginning to frustrate me. A lot.
To add to my frustration, my medical oncologist was not available because he was out of town. I couldn’t discuss my thoughts, feelings, beliefs, or inclinations with him. All I knew was that I felt like radiation was the best plan and I knew that he thought waiting for an upcoming clinical trial was the route to go.
This was the first time in four years that I had different notions than my doctor did. It was an uncomfortable place to be. I love and respect my medical oncologist. And, as I have stated before, I am well aware that I am not a doctor. But I had a deep conviction that radiation was the way to go.
My thought process went something like this:
I have a tumor. It feels like it is growing by leaps and bounds. There are several routes that I can go:
- Radiation. Let’s obliterate that tumor. Get rid of it. Be cancer-free. (The tumors in my lungs are either scars or completely stable … cancer-free might be a bit of a stretch, but at least there would be no growing cancer.)
- Go back to Opdivo and wait on a clinical trial to open up in a few months. Opdivo was no longer controlling Wayward Tumor. The tumor that I feel like is growing by leaps and bounds every single day. Why would I want to continue on a treatment that is not controlling the tumor? I want rid of the tumor. Now! A clinical trial is just that – a trial. While my oncologist feels that I am a good candidate, we don’t know (1) if I will even get into the trial and (2) whether I will respond to the trial drugs.
As I said, I wasn’t able to discuss these thoughts with my medical oncologist. In my mind, there was only one route to go: the route that potentially obliterated the tumor; got rid of the offender NOW!
With trepidation, but only because I feared making my medical oncologist mad at me, I made my decision. I wanted to go with radiation. I was and am willing to live with the consequences if I have made the wrong decision.