Non-Hodgkin lymphoma (NHL) - Stage IV
This testimonial includes a description of this patient’s actual medical results. Those results may not be typical or expected for the particular disease type described in this testimonial. You should not expect to experience these results.
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Because I’m susceptible to migraines, I’m often rubbing my head with my hands. When I was 60 years old, I noticed a lump about the size of a small marble on the right side of my neck. Soon after, my daughter saw me rubbing my head, and offered to give me a neck rub to help alleviate headache pain. She felt the lump and was immediately concerned.
I went to a well-respected medical center near my home in Phoenix, Arizona. I’d had cardiac care there previously, and was happy with my treatment at that time. My doctor said the lump was a swollen lymph node that would likely be gone in 30 days. This was in the summer of 2009.
A month later, the lump was still there, and my doctor suggested waiting another month. The lump remained and had grown a little by the time I saw the doctor again a month later. My doctor ordered a CT scan, but the results were inconclusive. He still thought it was nothing to be concerned about. A month or two later, the lump still there, my doctor referred me to an ear, nose, and throat specialist at the same medical center. The doctor felt my neck and said it didn’t seem like anything to be concerned about, but the doctor agreed to schedule an ultrasound. Once again, the results were inconclusive. My daughter and I knew it was larger than it had been before, and she was growing frustrated with the doctors dismissing it as nothing.
We remained concerned, so the doctor referred me to a head and neck surgeon. That doctor performed a fine needle aspiration, a type of biopsy. The pathology results came back benign. After our initial sigh of relief, concern quickly returned. “I don’t have a lump in my neck, you don’t have a lump in your neck,” my daughter said to the specialist, “and this lump wasn’t there six months ago.” He told us that most of the time, lumps like the one I had weren’t cancer, but he would take it out if we wanted him to. I had surgery in January of 2010, which removed part of the lump; it turned out that there were three, not one, with two located under my jaw in a spot that I couldn’t feel by hand. My doctor analyzed one of lumps and finally I had a diagnosis: as we’d feared, I had cancer. Non-Hodgkin lymphoma, to be exact. I had to start chemotherapy right away, as soon as I’d healed from the surgery.
I had four rounds of treatment with rituximab, a monoclonal antibody. After those treatments, my doctor said that there was now enough chemotherapy in my body to finish the job. That decision was disconcerting because originally I’d been told I’d have six rounds of treatment. A diagnostic scan done after those four rounds still showed the 3 tumors in my neck, along with new spots on my lung lobes. When my daughter and I asked what the spots were, the doctor told us not to worry, that they were on top of it. That response was unsettling; it’s my body, I have a right to ask questions and to know what’s going on.
Six months later, I had another scan. This time there were spots on all fives lung lobes, in my stomach, and on my spine. Yet I was not receiving any treatment. The scan seemed to show that the cancer was exploding, but the medical professionals looking after me were not recommending further treatment.
Now 18 months after the first doctor had seen the lump in the summer of 2009, I decided to seek care elsewhere. A friend of my daughter had suggested calling Cancer Treatment Centers of America (CTCA). On a Friday in June of 2011, we made the call. By Monday, an appointment was scheduled. On Wednesday, we went in for a consultation.
When I first called CTCA, the representative was very sensitive about what I’d been through. I was told that CTCA would make all my appointments, schedule all my procedures, and help me every step of the way. “That’s what we do,” the representative told me. I felt I’d made the right call, and when my daughter and I drove up to the hospital a few days later, we burst into tears. I was sick with cancer, and I knew that my job as a mother and a grandmother wasn’t done. Finally going to a hospital that focused entirely on cancer treatment was the right decision.
At CTCA, the doctor acknowledged that the cancer had escalated. He diagnosed it as stage IV NHL, and said that the treatment would have to be strong. He offered to use a new type of liquid radiation. I had been at stage I when I was first diagnosed, and now here I was, with stage IV cancer, knowing full well that there was no such thing as stage V. There was nothing to lose, so I told my doctor to do whatever he thought would help.
I had three days of chemotherapy followed by hydration on the fourth day. I went through that cycle five or six times. On the last day of the last cycle, I had the new radiation he’d told me about within two hours of completing the chemotherapy. My doctor told me that he thought this approach would put me in remission for up to ten years. He warned me that I’d be sick about four weeks after the radiation treatment, which was exactly what happened. My blood cell counts decreased and I needed to have a transfusion. But after a couple of weeks, I was recuperated.
Through all of my treatment at CTCA, I never missed a day of work. The chemotherapy gave me bone pain, but some over-the-counter medication alleviated that problem.
At CTCA, I was treated like a family member, and the care was complete. When I had neuropathy (numbing) in my feet, I had cold laser treatments, which didn’t work, acupuncture, which did not work, and then a rebuilder, which did work. My care team kept at it until they found an appropriate treatment. When I didn’t feel well, my care team didn’t schedule an appointment for a few days later. They asked me how quickly I could get to the hospital, and if I needed a car to pick me up.
My job was to get well. Everything else was taken care of for me. In the dining room, we could get a complete meal for almost nothing. I had all the information I needed to help me understand what I would experience from the chemotherapy and radiation.
Over the course of my treatment at CTCA, my scan showed improvements. When I found out I had stage IV cancer, I lived my life one day at a time. Now, I can look ahead and make plans for the future. We are planning trips for six months from now, a year from now. If I had not gone to CTCA, I don’t think I would be doing that.
My experience made me realize that I have a choice in the kind of medical care I receive. Now, I try to convey that message to others. If you’re not sure you’re with the right doctor, get a second opinion, or a third opinion. Trust your instinct; don’t ignore it. That is the most important thing you can do for yourself. I did it, and I believe that’s why I’m still here.