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Lisa DeSantiago

Non-Hodgkin lymphoma (NHL)

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.

View CTCA treatment results for prevalent cancers we treat

Overview

My story

For many years, I’d been having symptoms that would come and go—low-grade fevers, night sweats, a mild cough. The symptoms always came together, and they would go away together. After a regular check-up, my general practioner saw something in my blood and told me I needed to see a hematologist. Only when I called the phone number he’d given me did I realize he’d sent me to a cancer center.

At this local cancer center, near our home in Hamilton, Montana, I had a blood test, a chest x-ray, and a bone marrow biopsy. The biopsy, which was extremely painful, led to the diagnosis of non-Hodgkin lymphoma (NHL). I was 51 years old at the time.

But a diagnosis of NHL always comes with a subtype, and my hematologist could not find enough tissue in my lymph nodes to determine the subtype. He told me that I needed another bone marrow biopsy; he was almost certain what type of NHL it was, but another biopsy was necessary to make it definite.

During the next three months, I underwent several procedures, including a splenectomy. Once my spleen was removed, the symptoms disappeared. I felt like a new person. My doctor put me on “watch and wait,” knowing that the cancer would return but unsure of when. Some friends and I had a girls’ trip to Italy planned for August 2012. Three weeks before we left, the cancer returned. I went on the trip and saw my hematologist as soon as I returned.

One decision leads to another

When my symptoms returned, my doctor told me that he needed to do another bone marrow biopsy. The cancer was in the bone marrow, and accessing that area was the only way he could make a diagnosis, and making a diagnosis was the only way to determine the best treatment. I understood, but I did wanted a general anesthetic for the procedure. I just could not go through that pain again. My doctor was hesitant to commit to a general anesthetic, but after several minutes of talking about it together, he seemed to agree. But when I spoke to a nurse about the arrangements for my appointment, she said I’d be given a valium and that was it.

I called my doctor about the confusion, but never got a response. I kept trying to tell myself to be a big girl, just suck it up, that I would be fine. But I just could not go through another procedure like that without general anesthesia.

Then a nurse who was taking care of my father-in-law told us her niece had gone to the Cancer Treatment Centers of America (CTCA) facility in Chicago. I had seen the commercials but had never considered calling; the traveling would be too costly for me. But hearing about it this time, feeling desperate, I decided to call.

The representative I spoke with told me that I could go for just a bone marrow biopsy with general anesthesia. When he told me to keep an eye out for my itinerary and hotel reservations, I was floored. He explained that CTCA would cover my flight, that someone would pick me up at the airport, and that my hotel reservation was also settled. The amount of stress that this relieved was incredible.

When I got to the hotel, I was nervous. But no sooner had I started wondering where I was supposed to go and who I was supposed to see than a schedule was slipped under my hotel room door telling me everything I needed to know. It was great.

I had the bone marrow biopsy and a couple of other tests. When I met with the oncologist afterwards, he told me that he could diagnose the subtype of NHL that I had. Right then I decided to stay at CTCA for treatment.

The care continues

My experience being treated at CTCA continued to follow in this same vein. For one of my visits, the flight was very late due to bad weather. We’d spent hours sitting on the runway. When I finally arrived I was very hungry but the cafeteria was closed. When I got to my hotel room, there was a sandwich, chips, an apple and a bottle of water waiting for me. When I went through the first round of testing in 2008, I had a binder filled with insurance information. At CTCA, I received one bill and all the red tape was handled by the staff there. All of this care relieves an enormous amount of stress.

The treatment itself was not as bad as I’d feared. I was able to handle the chemotherapy, and although I experienced the normal few days of not feeling well afterwards, I was able to keep going. Anti-nausea medication was helpful, but there were no other side effects out of the ordinary that required addressing.

Still, the fear that comes with cancer treatment was always there. I would try not to think about when I wasn’t actively receiving treatment. But when you’re sitting in a chair having chemotherapy, it’s impossible to not have some worry. The level of care at CTCA helped alleviate those fears. From the drivers to the housekeeping staff to the doctors and nurses—I have never experienced such personal treatment. I wasn’t asking for anything special; the care was just inherent in the way people were with me and with every other patient there.

Finding your own way

My experience with a cancer diagnosis has shown me how important it is to feel comfortable with one’s medical care. If something is not right for me, then I don’t have to do it—that may sound obvious, but it was a lesson I had to learn. I have the right to take care of myself, and I have to find a doctor who really wants to take care of me.

The care given to me at CTCA helped me cope with cancer and its treatment. The range of activities offered if you’re feeling well enough; the refusal to deliver a prognosis in terms of years or months of life left; the attitude among all the staff—all of this keeps you focused on living. When I am there, I feel good. The treatment worked and now I’m able to keep living. And I know that if I ever experience problems again, CTCA will do whatever is needed to keep me going.

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