March 19 - Staging and Treatment Options

             One week in! I can't believe it has only been one week since we found out I had cancer. So much has happened, so much has changed. We have done more medical things than I think is normally possible in this amount of time. There is only one test left to do and we have it scheduled for tomorrow.    

             Today was a day we had been looking forward to since we started this medical crazy train. Today we would get the results of our tests and know what stage my cancer was, how long I would need treatment, and everything else that we didn't have answers to yet. I was nervous, but because the CT scan results had been so positive and I still had no symptoms I was optimistic.

                Before our visit with the doctor we had to do an ECO cardiogram to make sure that my heart was strong enough for the chemo. It wasn't part of the staging, but it did need to get done. When we checked in there was some kind of record error and they printed off my form with the name Kayla Anderson. While I am very fond of some Andersons, that wasn't my name. They had to get that all sorted out before we could begin the test, so Chase and I had about 20 minutes to watch Hoarders. To be honest it was terrifying and I told Chase how lucky we were that I had cancer and not a hoarding disorder. Once the clerical error was out of the way the test went smoothly and everything looked normal. I had never seen my heart up close like that before and it was very interesting.

                From the hospital we went straight to the oncology center to talk about our results with the doctor. He started by giving us all the good news. The PET scan showed that there wasn’t too much cancer, nothing large or bulky. The bone marrow biopsy came back clean. However, the bad news was that it has spread farther than anticipated. There was cancer in my neck obviously, but it has also spread to my chest, and most disappointingly my spleen. This meant that I was going to be categorized as a stage 3A (A being non-symptomatic).

                Hodgkin’s has 4 stages, 1 being the least severe and 4 being the most sever. Here is how they are categorized:

Stage 1: Lymphoma cells in one lymph node cluster

Stage 2: Lymphoma cells in the original cluster, and an adjacent one on the same side of the diaphragm (which is the dividing line in staging). Hodgkin’s spreads systematically and more slowly than non-Hodgkin’s. This is part of the reason it is more treatable

Stage 3: Lymphoma cells in several clusters on one side of the diaphragm, as well as some on the other side. Most often this begins in the spleen, which is the central organ of the lymphatic system.

Stage 4: The lymphoma has moved into the bone marrow and is considered at its most advanced stage. 

                We had been hopeful that I was a stage 1 or 2. To hear stage 3 was a huge disappointment. It meant months more chemo. Prognosis is still very good though. I am young, healthy, non-symptomatic, and have none of the advanced risk factors, like bulky tumors or being a man. We were also happy to hear that I wouldn’t need radiation, with either treatment option we picked.

                Now that we knew what stage I was we still had to choose a treatment option. There were two that our doctor recommended, and both had nearly identical results when it came to curing the cancer. The differences came in when it came to the length and side effects of treatment.

                Here were the options:

Stanford 5: This treatment takes 12 weeks, with 6 chemo drugs being administered every week. However it was slightly more toxic, and the chances of needing radiation were higher with this option.

ABVD: This treatment takes 24 weeks at my stage, but the drugs are only administered every other week. The toxic side effects are less severe, and it is also less likely to require radiation at the end of treatment. 

                There was so much to think about, and at this point we didn't feel like we had enough information to make a decision. Obviously we wanted to pick whichever option was going to cause the least amount of harm over time. His recommendation of Stanford 5 just didn't seem to feel quite right. If only for the reason that 12 weeks is better than 24, but he made it clear that as far as a cancer treatment we couldn't really make a wrong choice. Our doctor is a wonderful man, but he does not treat Hodgkin’s patients quite as often. Before we made any decision we wanted to get a second opinion. Because we were waiting for the fertility preservation process to be complete we had about a week before this decision had to be made.

                That night was full of more research, more prayers, and more questions. For the first time in this whole process though we had time. The luxury of making a decision in more than a few hours. With that in mind we called it a night.