I visited with my surgeon and chemo doctors yesterday. We had all done a good deal of preparation for this meeting. I had prepared a one page assessment, options, and questions, pros and cons per option document to help me work through what was the best next step. There were 5 options ranging from "doing nothing" on one end of the spectrum to "doing more chemo now followed by surgery after the chemo" at the other end of the spectrum. I sent that to my doctors last Friday evening. My surgeon responded back on Saturday. He answered all of the surgery-related questions and provided his recommendation. He had also had time to review my PET and CT with contrast scans from the previous Wednesday and confirmed the preliminary results. One new piece of information though was that the infected lymph node tumor in my neck had grown slightly since my last scan 6 weeks ago. It went from .7 x .9 cm to .9 x 1.0 cm. As such, it is still slightly less than a centimeter (about 1/3 of an inch), but the fact that it had grown (42% by my simple math) while receiving intense weekly chemotherapy confirmed that the chemo was not effective on this tumor. The chemo had been effective on all other macro cell cancer hot spots. One can have variations of similar cancer cells in their body and chemo can be effective on some and not on others. This is a very complicated disease. Cancer educational tidbit… A macro cancer cell tumor is one that can be detected by today’s scanning technology. A micro cancer cell is cancer, but can not be detected by today’s technology, but it will continue to divide and eventually become a macro cancer cell tumor. In addition to the increased size of the existing tumor, it had also increased its metabolic rate by about 50% since the last scan. This means it is consuming more energy than normal cells and at a faster pace. Based on all this, my surgeon recommended a limited neck dissection surgery and performing it sooner than later. When we met yesterday, it took about a minute for us to agree on a course of action and timing. My only real question then was how to tell if future chemo treatments were effective since we did not have the barometer of the lymph node tumor to provide that insight. My chemo doctor joined us. Both he and my surgeon agree that I am at a high risk of a recurrence due to currently undetectable micro cancer cells. They also both agreed that surgery was a good next step, but it should be followed by more chemo. I asked how we would know if the chemo was effective without having the lymph node as a barometer. The scenarios: 1) if I don’t have micro cancer cells in my body, then it was not worth doing the chemo, but we’ll never know. 2) If I do have micro cancer cells in my body and they are destroyed by the chemo, we’ll never know. 3) If I do have micro cancer cells in my body and they turn into detectable tumors, then we’ll know that the chemo has not been totally effective. But, the chemo may have controlled them longer and made them less aggressive, but we’ll never know. I guess you get the theme here, we’ll never know.
Surgery is scheduled for Tuesday. I had a similar surgery following radiation treatment on the left side of my neck about a year and 8 months go. 17 lymph nodes in my neck were removed. We’re hopeful that this will be a bit less invasive by removing the one infected lymph node and possible a few around it. It will require full anesthesia and one (or possibly two) nights in the hospital. The operation should be about 2 hours. A piece of cake compared to the 12 hour operation last July, but still not trivial. Surgery appointment times are not provided until the night before the surgery and actual surgery time on the day of surgery can still be highly variable depending on many factors outside of my own (e.g., availability of an operating room if a prior patient’s surgery ran longer than anticipated). So, there you have it. Any questions, please feel free to post them or send me an e-mail. Now onto some other areas that may be have interest.
I visited the Leroy Sievers’ web blog on June 11th. He was featured on the Ted Koppel Discovery Channel “Living with Cancer” special in early May 2007. I wrote about the special on May 8th. Leroy has cancer and has a cancer blog on the NPR website. It was this special that provided the impetus for me to create my web blog. For those that may be interested, Leroy’s URL is:
http://www.npr.org/blogs/mycancer/
During the special, Leroy reported that he was classified as having no evidence of disease (NED) due to a very innovative, yet unproven, surgical technique named radiofrequency ablation. This procedure was used to remove a few inoperable lung tumors. These tumors were going to kill him and do so quickly. The surgery used some magnificent techniques to insert a needle into the tumor; the needle was guided by use of a real time imaging device, and then once inside the tumor it was heated to kill each tumor. It looked so promising. Plus, instead of cutting into the body cavity and the lungs, which would be major surgery (and for some reason I do not understand, inoperable), it was done in two hours as an outpatient. I asked my surgery doctor about using this technique on my neck. He said he had never done one, so would not do one on me. That prompted me to go out to the web to search for use of this technique on Head and Neck cancer patients. I found an article from 2002 from a doctor at a very well known hospital in New York who had used this procedure on 4 head and neck cancer patients. The article said it showed promising results and to call or e-mail him as he was looking for additional patients. I called and e-mailed him. I provided a brief history of my background and current status. He is now the Chief, Head & Neck Division, Department of Surgery, for this hospital. He said the procedure had proven to be somewhat risky and not uniformly effective. As such, they closed the clinical trials until more experiments could be performed on lab animals. No lab tests were currently in progress. He also reported that Head and Neck cancer was not high on the list of cancer killers (compared to other cancers such as lung or breast cancer) and as such received limited funding. Basically, once again, the big business of cancer. He was very prompt in his responses. We traded about a half dozen e-mails over a two day period. I really appreciated his insight. The message from me here is twofold, first be proactive if ever in a similar situation and second, don't give up. Now, back to Leroy Sievers. On his June 11th blog entry he reported that a scan he had had the previous week showed new tumor growth. I, along with 63 others posted comments to his blog that day. On June 12th he did a fantastic job of summing up how he feels and probably how I will feel if my cancer comes back. The next two paragraphs are from Leroy’s blog.
“Now I sit here trying to make sense of my latest news, and figure out where to go from here. It's a little depressing, and now I understand one of the reasons why. Cancer has taken away much of that mystery from my life. I liked not knowing where the adventure was going to take me. I didn't want to know what was going to happen next. I never ever look at the last page of a book ahead of time. I don't fast forward to see how a movie turns out. I wanted my future to be as wide as my imagination could make it. Thinking that the future was still to be formed, that there were a thousand different paths that could be taken, all that made me smile.
Instead, cancer has brought too much certainty. I have a pretty good idea of what the next two or three months will be like. And I can guess what will happen after that. I realize that the disease will just keep attacking me. There may be brief respites, like the one I just had, but I expect the assault to be unrelenting. I know what the procedures will be like, what the drugs feel like, how my body will react. I know too much. And like it or not, I have a pretty good idea of how this is all going to end.”
That is the end of Leroy’s quote.
For me, I don’t think I’ll die this month and probably not this year, but when I do, I know it will be sad and it will be too soon.
On a more positive note, somewhat Hollywood-ish (every story has a happy ending – they didn’t end The Sopranos this way BTW) some of the chemo fatigue has lifted and I have begun working out with 5 pound weights. A far cry from the 35 pound weights I used before cancer and 20 pounds weights prior to the December 2006 chemo, but I’m beginning to feel less fatigued and also beginning to feel a bit better.
I will probably not post again until after my operation next Tuesday. So, if you don’t hear from me for a week, no worries, there is just nothing really new to post. Take care everyone.