The roller coaster ride continues! This blog post is about my experience with radiology throughout my journey. Radiology is so important in the cancer world. Scans are the window into our bodies, the most powerful tool we have to assess how cancer is behaving. And of course, the person who reads these scans is of outmost importance. There is a reason why the term “scananxiety” has been coined. Scans bring a lot of anxiety, before, during and after, while you are waiting for the results. Before my cancer journey, I didn’t know much about scans, but after 3 PET scans, 2 MRIs, 6 CT scans, 4 xrays and 3 nuclear medicine scans in the past 22 months, I guess I can say that I have learned a thing or two! The reason I am writing about this, is that in my last post I mentioned how an appointment I had a few weeks ago didn’t go the way I expected, and that appointment was actually with a radiologist.
I am going to try to make this story not too long but it is a bit long! As I said I have had a few scans in the past few months and with each scan comes a report. I always ask for a copy of these reports and comb them through to understand as best I can what is truly going on inside my body. I had decided to go with a certain center when I saw that the reports from their radiologists were more extensive than a previous center I had gone to. Back in May, after getting scanned for about 9 months, a radiologist noticed a spot on one of my bones and recommended a follow-up bone scan. My then oncologist, who I suspect only read the summary and recommendations part of the report, also recommended the bone scan. I told her I would think about it as I wanted to get a copy of the report and read the whole thing as I always did. Well from reading the report I caught the following words “most likely a bone island” and “no changes from previous scan”. My first thought was “what previous scan?”, this had never been mentioned before. I went back and reread all my scan reports and nothing was ever mentioned. I ran into my doctor in the hallway 2 days later as I was getting my chemo pump off. I mentioned it to her and asked her if we could find out when it was first seen? If it had been there all along and had not changed then I didn’t think that a bone scan was necessary. Her response was “well why don’t you call Dr. P.”. I left the office furious, really she wants me to call the radiologist? didn’t she know that they don’t talk to “patients”? didn’t she realize how much work it would be for me to find a phone number for him and get him to call me back when she probably had his cell number saved in her phone?. Well give me a challenge and see what I can do right? So of course, I found a way to get in touch with this radiologist. He called me back thinking I was a “MD” doctor and when I told him I was a Ph.D. kind of doctor I heard a “ah” – maybe he wouldn’t have called me back? He was really nice and took the time to go back to my original scan and told me that this spot was there from day one, it was most likely a bone island and in my case probably not worth the bone scan. I was pleased with my findings. Then I started thinking about the profession of radiologists, wondering what it’s like to read somebody’s images without never knowing what he/she looks like, do they wonder, do they even care? It takes someone special to want to spend days in a dark room surrounded by large luminous screens and looking at body parts to identify all and every tiny spots or whatever is abnormal. I can’t even imagine working with someone I couldn’t physically see. So I decided to send a thank you note to this doctor and included a family portrait! I thought if he had to read my scans again, he would know who I am and I always like my docs to see my kids so they know what they are dealing with! Anyways fast forward to a few months later when I got scanned again and the results on the report were somewhat confusing. By then I knew not to ask my oncologist and decided to go directly to the source. It was a different radiologist who had read it but he was very meticulous and I liked his reports the most, he actually takes time to measure not just one spot but many of the spots I have on my liver. I was fortunate to know someone who had worked with him before and she got him on the phone for me. He was a bit taken aback but he took the time to answer my questions and informed me that if I had my scans done at a different facility where he also works, that I could make an appointment with him to go over the scans! Sweet I thought! I loved the idea of having one radiologist who would get to know me be the one to read my scans. I had hopes that him getting to know me would make him more invested in my case. So I decided to get my further scans at his center. With all the procedures I had done at Shands, they performed quite a few scans there and wanted me to come back there for further scans to better be able to compare the results. I still went to this local radiologist’s center to get my gallbladder scan and recently I needed an x-ray and went out of my way to have it done there. When I got the results that the cancer had spread to my lungs, we were not clear about what exactly was seen in the lungs. The report said one thing and my oncologist said something else and we all decided (with my 2 oncologists) that having a radiologist compare my latest scan with previous ones would be a good idea. I could not think of anyone better than this last radiologist I had spoken to and since he had reviewed previous scans and that I was now established at his center I thought it was going to be a slam dunk! I drove 30 minutes to bring him my OCD prepared file with disks and reports. Then I drove 30 minutes to meet with him. Well, the visit didn’t go as expected. He was willing to discuss the gallbladder scan I had had in January. I had to interrupt him to tell him that my gallbladder had been surgically removed so it was a moot point. Then he told me he would not review “somebody else’s work”! So I found out nothing! It was super frustrating and disappointing, I had tears running down my cheeks, not too sure why but probably because I thought he could finally shed light on the status in my lungs – since February we have been in the dark as to what the situation really is… I am grateful that my new oncologist is on the ball and brought my case to his tumor board for review. Two weeks ago he gave us the good news that there were only a few spots on each lungs, this was much better than the flurry of spots we were told had been seen. He also informed us that they were going to look at the pictures again at their next meeting. Well when we showed up at my last appointment, I was told that the radiologist had looked at the picture using a different technology and that indeed there was a flurry of spots in my lungs. I just can’t understand how things can be so ambiguous and that the results from one scan can be so different depending on who is looking at the images. Let me tell you that it makes me wonder how accurate these scans really are? I was of course devastated when I heard the news. Two weeks ago we were rejoicing with the news and then we were hit to the ground again. BUT we know that I am responding well to this treatment with my cancer marker almost being back within the normal range, so this is very motivating. I am starting to feel the cumulative effects of this cocktail but my oncologist is on it. Unlike the other one, where I knew I had 12 rounds, with this one it is “indefinite”, I was told I would be on it “until it stops working” but if a really good immunotherapy trial pops up then I will go into the trial. Results from the recent ASCO meeting (American Society of Clinical Oncology) are promising but for now the immunotherapy trials available are not geared at my case, with the mutations we know I have. I am still waiting for the fruit fly study to open up and my insurance company finally approved Celebrex so I am excited about targeting those cancer stem cells! In the mean time, I am continuing to look into energy work and just discovered Qigong – who knew I would ever be interested in Qigong!!! I am just coming back from a weekend intro and signed up for a teacher certification since I liked it so much! Hey I am willing to try anything, remember? I will even try to jump on a trampoline to help my lymphatic system, apparently lymphatic drainage massage can help – jumping on a trampoline can have the same effect! It is starting to look like a circus around here lol!!!