I apologize for this lengthy post, but it has a lot of pertinent information that I think is important to share.
Since my last post my mind and my thinking have been unclear on the best treatment option for my cancer. The main reason for that is I reached out to the Provision Proton Center to see if they had an alternative treatment to the Y90 that I detailed in my last post. I had a couple of my Toastmasters Club at Dowell Springs friends suggest that I reach out and it made sense.
I had not seriously considered the proton therapy for a couple of reasons. The first is that there isn’t a lot of information regarding Proton Therapy being a treatment for liver cancer. The second reason is that there is no information that I have found that compares the outcomes for these two radiation treatments. And of course, neither UT nor Sloan Kettering endorsed Proton Therapy when I asked about it. Of course, they would steer toward the more practiced treatment as expected.
The Provision Staff were wonderful in getting me set up with Dr. James Gray, the Medical Director, who was in from Nashville. Provision is building a new facility in Nashville that is state of the art. Memorial Sloan Kettering is building a $ 130 million center in Harlem. That would certainly indicate that Proton Pencil Beam Therapy is a treatment that will be more widespread with many more applications in the future.
Dr. Gray was extremely thorough and spent quite a bit of time with us going over every aspect of the possible treatment. He indicated that the Proton Therapy could better pinpoint the tumor without harming healthy liver tissue. This is important since the liver is very sensitive to all forms of radiation treatment and many patients go into liver failure and die even though their treatment may be working.
At the end of our time Dr Gray informed us that he thought I would be a good candidate for the Proton Therapy with a pencil beam targeted approach. He suggested that I would need around 15 treatments conducted 4 or 5 days per week. Treatments would only be about 20 minutes each and I live about 5 miles away so a very minor disruption to my schedule.
The only problem in the treating radiologist would be Dr. Meek who was out of town for another 10 days or so. I would have to see Dr. Meek and if he agreed with Dr. Gray (He almost certainly would) then I would have to have a simulation where they measure and equip me with all the devices and apparatuses that I would need to stay still during my treatments. Another interesting aspect is that with any general or targeted external radiation treatment the movement of the liver caused by your diaphragm moving the liver creates a moving target and that must be planned for. Complicated, of course.
Leaving the center that day it seemed like I had another pretty good option. But if you knew much about Shelia and I and our combined experience with cancer and its treatment you would know we are relentless. We pored a lot of time and energy in trying to find out more about the two treatment options. The internet is a wonderful research tool in that there is a wealth of information available.
The problem with much of the medical information and the resulting conclusions is that it tends to be biased in many cases. Not always of course, but clinicians and medical institutions tend to report and document the treatments that they perform and/or are familiar with. So, head to head comparisons of results are rare.
Shelia and I both were searching the internet anytime we had a free moment and we would instantly share pertinent information with each other as well. It is not a surprise that we interpreted the articles differently some of the time but with both of us digging we found a lot.
One of my concerns was that since I already had my mapping done and had scheduled the Y 90 treatment for Monday, September 17 what would a delay mean as far as allowing my tumor to grow and potentially metastasize which would be a devastating game changer. I had looked at a reasonable time frame of staring the Proton Therapy by the end of October which would almost 3 months since my diagnosis and that really worried me. Shelia and I talked a bunch about this and we agreed that if we could start the proton therapy around the first of October AND we also still thought it was the best treatment option, then that would be the way to go.
I called Provision and they were so responsive. The best we could do was to see Dr. Meek on September 17, have the simulation and fitting on the September 24th, and begin treatments the week of October 8. At this point we were leaning heavily toward that. In the meantime, we continued to research both options.
Primary liver cancer that is as large as mine is (9 centimeters) is very serious and without treatment the life expectancy can be as little as 3 months. In addition, my cirrhosis also means that any treatment could put me in liver failure and I wouldn’t last long. That is why it is so important to get my affairs in order and try to enjoy what is left of my life no matter how long it is. Please keep in mind that all treatments we have discussed are considered palliative unless we can shrink the tumor enough to warrant surgery. This is an important point as you will see at the end of this post.
In collecting and analyzing information regarding the two radiological treatments we found a lot of information. For instance, one article from the Mayo clinic indication that the Y 90 treatment had been known to extend life expectancy from 3 months to 2 years. Another study indication that the Y 90 could have a progression free period of up to 12 months and increase life expectancy to 18 months.
An article on Proton Therapy indicated that it was a good choice for people who had large primary liver tumors. Another article indicated that the progression free time and life expectancy could also be extended by a few months. Another factor is that liver cancer is not a frequent cancer in the United States currently. That means that available research dollars are not as much as for many other cancers, so treatment options are limited. And it doesn’t always have clear symptoms, so it is usually not detected where their will be good outcomes. Another factor is that many patients who are included in the studies are sick with other co-morbidities so many die even when the treatment is somewhat effective,
And then there were really no comparison studies between these two treatments and we could find and no real consensus by my caregivers. I hate not having a plan and not being able to hone in on one objective at a time. So, you can see how the information overload had me a tiny bit anxious. It would be a perfect time for a couple of glasses of dry red wine and a good soak in the hot tub. But I am off alcohol forever!!!
So being the planner I am I reached out to UT to try to postpone my Y 90 procedure until I saw Dr. Meeks on the 19th to discuss the Proton Therapy. That is when the fight started! When I discussed what I was wanting to do the Nurse Practitioner indicated that the Y 90 radiation beads had already been ordered from Australia (Who knew?) and that I need to be concerned about my lifetime radiation exposure and why the Interventional Radiologist still thought that the Y 90 would be the best way to go. He also mentioned that they cost $30,000. Did he try to guilt me? I told him I need to think about it. At that point I was leaning heavily toward the Proton treatment. That was Tuesday of this week.
The next day I called back to UT and this time the Resident working with the Radiologist called me back and I again stated that I wanted to postpone the treatment. She indicated the beads would only have a few days where they would be effective, so postponing was not an option. She also threw out the notion that even if I didn’t have the treatment then my insurance would still be billed. Guild Card number 2?
I think it is very important here to state that if I thought that the Proton Therapy was superior I would gladly dig my heels in and do what I thought would be next to save my life or at least extend it for as long as possible. But that’s the rub. I was not sure which treatment would be best for me. I was indecisive. Shelia and I continued to discuss, and we kept going back and forth. Shelia prayed for the answer.
The answer came on the way back from meeting Shelia’s two cousins for breakfast in Maryville yesterday morning. They were in town to make some arrangements for their gravely ill Aunt. Phyllis and Barb are fine women and it was a joy to catch up with them. After our time together, we were on the way back to Knoxville for the Dowell Springs Toastmasters meeting and my phone rang. I normally don’t answer calls from an unknown number but with all my medical issues lately I now answer every call. This was a call from New York.
You may remember that I discussed Dr. Peter Gingham in my New York New York blog post. He is the liver surgeon that I saw at Sloan Kettering. I surely didn’t expect to hear from him, so I was thrown for a loop during our conversation. As you recall he indicated that I wasn’t a good candidate for surgery at the time I saw him. So, what he said was a big surprise. A good surprise.
He indicated that he had been going over all my scans and other documentation and he said that the smaller mass in my liver was not likely cancer at all but just a small mass. He indicated that after I had the Y 90 procedure and if it was effective as he thought it would be, then he felt like he COULD perform surgery and remove my tumor. What!!!!!
After the Y 90 procedure I would have a scan in 2-3 months and if the progression was stopped and/or the tumor was reduced then it’s a real possibility that surgery would be an answer. Normally the only real cure for cancer is to cut it out and prevent it from spreading. I could not believe what I was hearing but I had my phone on speaker, so Shelia heard it too. That is why you travel to Sloan Kettering in the first place. The top doctors are always looking out for their patients and trying the best way possible to treat them. And they are the ones making the call. Not an assistant or Nurse Practitioner, but the head guy! Just awesome!!!
At that point I asked him his opinion regarding the Proton Therapy vs the Y 90 and he said that Proton Therapy is a rapidly growing therapy that has great promise but, in his opinion, there isn’t enough clear evidence that for my liver tumor that it would be more effective than the Y 90. Although Dr. Gingham is not a radiologist, he is indeed one of the top liver cancer surgeons in the United States and I must believe he would have a better opinion than almost anyone regarding treatment for the liver. That made my decision of which treatment to pursue very easy.
When we got off the phone with him I immediately called and confirmed my Y 90 procedure at UT this coming Monday and called and cancelled my appointments with Provision. Shelia prays about everything and she believes like I do that things happen for a reason and when one path is blocked then another one opens for you. On the surface it looked like the New York trip was not beneficial but in retrospect it was great that Shelia took the initiative to contact them. We don’t know at this point what the future holds but I now have much more hope than before. And without the Doll’s initiates and the trip, we would have fewer options.
Shelia mentioned the new hope on the way to Toastmasters and when we arrived there was an opening for a speaker slot, so I jumped right in and presented a 5-7-minute speech off the top of my head and without any practice. It was the easiest way for me to update my Toastmaster friends of my situation. The last couple of weeks I felt like the outcome of my liver cancer would be very bad, so suddenly, I had something to hope for in the fight of my life.
With my new perspective I feel like I did a pretty good job and showed some renewed energy with a speech entitled “Hope Is All You Need”
In so many cases hope is the only thing you need to have to push on and pursue the answer, not just in a medical battle, but life in general. Without hope we don’t move forward and achieve the things that are possible. Without hope we may just give up on a project, a job, or even a relationship. This should be a lesson that we should always have hope even in the face of overwhelming odds against us. Hope gives us courage enough to push on even when we don’t feel like it. Hope is the beginning of motivation and achievement.
Again, I want to thank each one of you for your love and support!