Why I chose not to get a second opinion yet

22117502When talking to people I am often asked why I didn’t get a second opinion about by cancer treatment. Many cancer patients in the area go to the Mayo Clinic in Rochester and believe I should have done so as well. In this post I will explore why I chose not to get a second opinion at Mayo, at least not yet.

Time is the main reason I chose not to get a second opinion. Early on in this blog I shared some of the breathing problems I had leading up to my diagnosis. At the time it appeared I might have some sort of lung disorder. When a large lymph node appeared on my neck it allowed my diagnosis to change towards a type of cancer. When I was able to view the results of a CT scan it was quite clear that a lymph node was obstructing my windpipe. Each day my breathing got worse. By the time I had a surgery to install a chemo port I was happy to be put under just so I could get relief from my breathing problems. My oncologist believed that chemo would reduce the size of the lymph nodes and allow me to breathe once again. I am happy to say she was correct. Had I waited any longer to receive chemo treatment I am not sure I could have physically or emotionally endured those breathing problems any longer. Even delaying treatment for a few days to get a second opinion may have been too much for me to endure at that time.

Another reason I chose not to get a second opinion is that I decided I liked the local oncologist. Prior to seeing the PET scan my wife and I spent some time getting to know the oncologist. At the end of that meeting there was some trust established. The fact the oncologist was part of a larger team out of Sioux Falls also helped to enhance that trust. Each case, including mine, was reviewed by a team of oncologists. No doctor is perfect, and it is reassuring to know multiple sets of eyes would be reviewing my case as time went on. Plus there is the fact my oncologist is also a hematologist. I am diagnosed with grade 2 follicular lymphoma, which is a type of blood cancer. Everything I’ve researched on the topic said it is important for me to have an oncologists that also happens to be a hematologist. If I had a different type of cancer it is quite likely I would have gone to Mayo for a second opinion.

I would say the last major reason I haven’t chosen to get a second opinion at this time is a wish to be treated locally. It is only about a twenty-minute drive to the hospital from where I live. Chemo wears the body out and it is nice to get home where I can lay in my own bed right away after my treatments. There is a healing power of being in ones own home. It is true I could have gotten a second opinion and still be treated locally. But I really didn’t want to put the stress of additional travel on my wife. She has had her life turned upside down just as badly as me by the cancer diagnosis. Adding trips to the middle of Minnesota would have increased the stress on her.

After getting through my treatments hopefully the cancer spread throughout my body will be pushed into remission. At some point during remission it is likely the cancer will come back in full strength. I quite possibly will get a second opinion when that occurs. Hopefully time won’t be such a large factor at that time. But even if I do get a second opinion I would like to keep my local oncologist and do my treatments locally. We will see what the future holds.

Return to the fireworks show

21079636Those following my blog may remember the first time I saw the PET scan result showing cancer spread throughout my body. I thought it looked like the final display for a fireworks show. After that scan things moved very fast and I started chemo the very next week. In this post I will recall the experience of meeting with the oncologist a week after chemo and being able to see the PET scan images again.

My original meeting with the oncologist occurred on Wednesday, September 5 (which seems like a lifetime ago now). In the first half of that meeting I got to know the oncologist. The second half of the meeting was where I saw the fireworks going throughout my whole body. I don’t remember much from that first meeting with the oncologist. Luckily I had a followup appointment scheduled with the oncologists one week after receiving my first round of chemo; which was about two weeks after my first meeting with the oncologist. This followup meeting with the oncologist was on Wednesday, September 19, for those keeping track.

The followup meeting with the oncologist is much clearer in my mind. In this meeting my wife and I were able to ask any questions about my condition. Honestly I really didn’t have too many questions. I tend to research things on my own and the few questions I had were more to confirm what I had already researched. Probably the biggest question she answered was how many cycles of chemo treatment I would have. My wife and I remembered her saying different numbers. The oncologist said I was scheduled for eight treatments; but that I would receive a PET scan again after three treatments and the results of that scan may show it only necessary to have six cycles of chemo treatments.

After answering our questions I asked the oncologist if she would show us the PET scan results again and let us know what we were seeing. I thought maybe looking at it with a clear mind it would look less like a fireworks show. I was wrong. Every bone shown signs of cancer. There were so many lymph nodes from my neck to groin infected that I gave up on trying to count them. A few of those lymph nodes were pushing into vertebrae, which explains some of the back problems I’ve had over the last year. One of my lungs was mostly taken over with cancer; although the other one was clear so that was good. My spleen was mostly infected with cancer. The spleen being full of cancer is not a surprise since it is part of the lymphatic system.

The kidneys and bladder were lit up. But the oncologist said this was due to the tracer drug used during the PET scan. Even so she paused when looking at one of the kidneys and I noticed later in my chart that it was recommended a kidney have an ultrasound done in the future just in case. So that is one more scan I will likely have soon.

Two weeks prior the oncologist had told me there was some good news, but I couldn’t remember what that was. She now let me know that news again. The glow of the cancer in the bones was consistent with the glow from the cancer in my lymph nodes. This likely meant the cancer which had spread was still low-grade and most likely had not transformed into a more aggressive form of cancer. She also let me know I would have an injection coming up to boost my bone marrow. Somehow I had forgotten that important bit of information from the first meeting with her.

I will have another PET scan after my third chemo treatment. Hopefully by that time my PET scan results will no longer look as extreme as this scan. Since my lymph nodes have shrunk and I can once again breath, I am assuming the chemo is doing something. I know my type of cancer can’t be cured, but I sure hope to see it being pushed back.

Meeting the oncologist part 2: The Fireworks!

34711852Two days ago I blogged about the first half of the initial meeting with my oncologist. Most of the first half of that meeting was about getting to know the oncologist and deciding whether my wife and I trusted this doctor to care for my cancer. Now I will focus on the second half of the meeting. Everything changed at that point due to the results of my PET scan.

The events of this post happened on Wednesday, September 5 (about two weeks ago as I write this). Earlier that afternoon I had a PET scan done. After the PET scan I met with my the doctor who would become my oncologist. About half way through the meeting with the oncologist my PET scan results were released. That was when the fireworks started.

As my doctor opened the PET scan results she explained we would be looking at “slices” of my body starting from neck and going all the way down to my thighs. She went on to explain there would be a glowing in the places where cancer was present. Almost immediately we were able to see about a handful of large glowing areas in my neck. I already knew there were lymph nodes with cancer in my neck because one of them was causing my windpipe to be restricted. What I didn’t expect to see was glowing everywhere as the doctor went along my body. I can’t actually remember much of that first scan, just feeling of being overwhelmed at seeing so many glowing spots. I also vaguely remember seeing my spleen and one of my lungs were infected with cancer. In my mind this looked like the finale at a large fireworks display. It appeared fireworks were going off everywhere!

I know the doctor took me through the whole scan an explained everything as we went. But I really don’t remember any of that. All I remember is her saying is that since my bones were infected that I would not need a bone marrow biopsy. She also talked about my symptoms and the fact that I would need to start chemo immediately. My lymphoma had spread to a point where a watch and wait approach would not longer be appropriate. Vaguely I also recall her saying there was some good news in what she saw so we would only have to do a chemo approach. I can’t remember exactly what that was she said though (in two weeks I met her again and know what she said now, but I will cover that in a future post).

After speaking with the doctor, my wife and I both agreed that we would proceed with chemo as soon as possible. The doctor put in an order to have a port placed in my chest to make chemo easier. This was on a Wednesday and she hoped the surgeon would be able to get the port in on Friday. She also hoped for me to start chemo the next Monday, although that was dependent upon me getting a port in before that time and upon the insurance company pre-approving chemo by that time.

Looking back I don’t remember feeling any particular emotion. I think I was just overwhelmed with finding out the cancer had spread throughout what appeared to be my whole body. There was probably a lot more said by the doctor during that meeting which I am simply forgetting. Luckily I had a meeting two weeks later with the doctor as she patiently went over everything with me again (again, that will be in a later post). Now that I think about it, I don’t even remember going home that day or if I finally got to each lunch after fasting for the PET scan. All I could see is the “fireworks” going off throughout my body.

This is where I’ll leave off for today. Even though I don’t remember much about the second half the initial meeting with oncologist, I will definitely never forget the fireworks discovered during said meeting. In the next post I will continue my story as I meet the surgeon and get a port placed in my chest.

Meeting the oncologist part 1: establishing trust

15316677Yesterday I blogged about receiving my biopsy result and getting a PET scan. Today I am going to write about meeting my oncologist. I am only going to blog about the first half of the meeting in this post. It is during the first half of the meeting I was able to meet my oncologist and decide whether I would keep her as my doctor. I will also note this is likely be a shorter post than normal, mostly because I don’t remember too much from the first half of the oncologist meeting (the reason will become clear during the part 2 post).

On Wednesday, September 5, I had my PET scan performed. In my last post I documented the PET scan experience. At the end of that post I had just completed the scan. I was taken from the imaging department up to the cancer center. This was my first visit to the cancer center. I don’t remember being nervous going up. All I really remember is hoping the meeting wouldn’t take too long since I was hungry from fasting for the PET scan.

My wife and I were brought into a room. In there a staff member came to get my vitals and some other basic information. After a while the oncologist came in. Sometimes when meeting with doctors I get the idea they are really in a hurry and want to get on with doing something else in some other place. I did not get this impression from the oncologist. In fact she seemed fully committed to meeting me. Actually, she seemed invested in getting to know both me and my wife. I really appreciated the fact she was focused purely upon the two of us.

This part of the meeting seemed to last about an hour, although looking back I think it was probably less time than that. During that time the oncologist reviewed what was known so far from prior blood draws and the CT scan. She explained the different approaches she generally takes with follicular lymphoma and what drugs would likely be used. A lot of what she would recommended was dependent upon the PET scan results, what stage of lymphoma I had, and if it had transformed into a more aggressive flavor of lymphoma elsewhere in my body. There was already suspicion of the lymphoma being spread into a more aggressive type due to possible issues seen with my lungs and liver in the CT scan. Oftentimes with follicular lymphoma a “watch and wait” approach is taken for the early stages. Since I already had what is referred to as “B symptoms” it was less likely that I would have a watch and wait approach; but she said it really depended on what the PET scan shown. She noted it is likely I would have to have a bone-marrow biopsy if the PET scan shown signs of the cancer being spread. Overall she spent a lot of time making sure we understood what might happen in the future.

During this time the oncologist answered our questions and gave us some literature to look at on our own time. The main thing I did while speaking with the oncologist was to measure her up and decide whether I trusted her to be my cancer doctor. Both my wife any myself came to the conclusion we liked the oncologist and trusted her to lead my treatment going forward. Of course we were also comforted by the fact she was part of a larger cancer team centered out of Sioux Falls. No matter how much we trust her it was good to know she had other doctors to act as extra sets of eyes.

As I said at the beginning of this post I would make this one shorter than normal. I don’t really remember much from the first half of my meeting with the oncologist. But I do remember that both my wife and I were able to determine that we trust this oncologist and believe she will work hard to fight my cancer.

This post basically is the end of my writing about the initial diagnostics phase of my cancer. Tomorrow I plan to do a recap of  the diagnostic posts I have written so far. Then on Thursday I will blog about the second half of the meeting with my oncologist. Everything changed for me at that time.