...picking a horse
An obvious photo of horses, to go with the tag line of this entry... Gelatin-Silver print, from the collection. Photographer Unknown.UPDATE (To Previous Post, Below): 12-24-2009:
I have decided that this is not the horse for me... at first, it rode well and the coat was nice, but something was amiss. So, I sold it before I got thrown. Dr. Warner was a good doctor, but I think the path, for me, was all wrong. It took some time to figure this out on my own... and sometimes, you grasp for any straw, be it short or long.... you are just happy to have something in your hand.
Former Post:
I've just returned from New York City after my meeting with Dr. Warner at Mt. Sinai. This is the first time I’ve left a doctor’s office feeling like I have a real plan for treatment! My research to date and endless search for answers has finally paid off. Dr. Warner is recognized at the foremost authority on Carcinoid Cancer, and needless to say, he is extremely knowledgeable with over 40 years of studying the disease. He is also the founder of the Carcinoid Foundation.
Warner carefully reviewed my files and scans with me in his office. We talked at length about my past exams, visits, etc. As he explained, from his experience, in cases like mine with the tumor markers I present, 50% of primary tumors are found in the pancreas. The primary can be the size of an eraser head, or smaller, but can cause a lot of damage over time. Therefore, once again, it’s VERY important to find the primary if at all possible. He has suggested that upon my return to Chicago, I take an EUS (a type of internal ultrasound performed under sedation) that looks closer at the pancreas, from inside the body. The pancreas is a very difficult organ to scan via MRI or CT, so this EUS procedure helps to visualize it better than previous methods. It should also be noted that upon reviewing my CT scans, he noted some dark areas on the pancreas that MIGHT be suspicious for a tumor, but not at all confirmed. –It could be nothing, but worth noting. Right now, I’m currently trying to get an appointment at UofC with one of the best EUS doctors in Chicago. Warner expressed that it was very important that the doctor be skilled in the procedure. He recommended Dr. Waxman (U of C).
If a tumor or lesion is found in the pancreas, it can be biopsied on the spot during the EUS procedure. Removing the lesion can be more difficult, but can usually be done via laparoscopic surgery, TBD. In addition to the continued primary hunt, Warner provided a more hard line course of action for addressing the liver. As Warner explained, even though my disease is slow growing now, it is typical for the character of the tumor/disease to change. Before you know it, a seemingly indolent disease can morph into something more aggressive, causing irreversible damage. Therefore, he stresses an aggressive approach to disease management, which involves surgery. Since I’m younger, my best chances for prolonging my life are to act now and be bold. The longer this thing festers, the worse it’s getting. Sure, it’s slower, but still on the move. Therefore, the “wait and see” attitude is not valid! Warner equated it to a fire in your house… it may be confined to the bedroom, but eventually, it grows larger… even though it’s small and only in one room, if you don’t make an effort to extinguish it, it will take over the entire house!
Warner has suggested a course similar to that of Dr. Woltering’s. We’ll try to debulk the tumors in a variety of methods, including surgical intervention and liver directed chemical therapies. This isn’t meant to remove all the Cancer, which is not feasible, but to reduce as much tumor burden as possible. In the process, they would also do some exploratory work to see what else is going on. Furthermore, they will save the tumor material for laboratory testing. That is, to see what the cells react to best in the lab. The surgery may include removing a section of my liver, which as you can imagine, will not be fun. I’ve decided that the best place to have the surgery will be in NYC under Dr. Warner’s care. That means I’ll have to be in NYC for at least 2-3 weeks for recovery, assuming all goes well. At this time, the plan is to complete the EUS, then review the case with the surgeons at the end of August. Warner expressed that the procedure should take place no later than the fall. I’m hoping we can do it sometime in Mid-Late November?
That pain in my side: during my physical evaluation, I showed Warner where I was having pain in my side. Afterward, upon reviewing the CT scans, he noted that the highest point of the tumor is in the area where I’m feeling the pain. He explained that there’s (some kind of membrane, lining around the stomach? Or organs, or something?) that the tumor is pressing on. The liver has no nerves, but that membrane does and it’s highly sensitive. –Hence the pain.
So, I guess you can say that I’ve finally “picked a horse…” I will be following Warner and his team for my care and I’m finally comfortable with the answers I’m getting. Will he cure me? No, he’s not a miracle worker… but I know he has the knowledge and experience to effectively manage my care… and possibly give me a few more years, or even decades, rather than just, “waiting and seeing…”
Warner carefully reviewed my files and scans with me in his office. We talked at length about my past exams, visits, etc. As he explained, from his experience, in cases like mine with the tumor markers I present, 50% of primary tumors are found in the pancreas. The primary can be the size of an eraser head, or smaller, but can cause a lot of damage over time. Therefore, once again, it’s VERY important to find the primary if at all possible. He has suggested that upon my return to Chicago, I take an EUS (a type of internal ultrasound performed under sedation) that looks closer at the pancreas, from inside the body. The pancreas is a very difficult organ to scan via MRI or CT, so this EUS procedure helps to visualize it better than previous methods. It should also be noted that upon reviewing my CT scans, he noted some dark areas on the pancreas that MIGHT be suspicious for a tumor, but not at all confirmed. –It could be nothing, but worth noting. Right now, I’m currently trying to get an appointment at UofC with one of the best EUS doctors in Chicago. Warner expressed that it was very important that the doctor be skilled in the procedure. He recommended Dr. Waxman (U of C).
If a tumor or lesion is found in the pancreas, it can be biopsied on the spot during the EUS procedure. Removing the lesion can be more difficult, but can usually be done via laparoscopic surgery, TBD. In addition to the continued primary hunt, Warner provided a more hard line course of action for addressing the liver. As Warner explained, even though my disease is slow growing now, it is typical for the character of the tumor/disease to change. Before you know it, a seemingly indolent disease can morph into something more aggressive, causing irreversible damage. Therefore, he stresses an aggressive approach to disease management, which involves surgery. Since I’m younger, my best chances for prolonging my life are to act now and be bold. The longer this thing festers, the worse it’s getting. Sure, it’s slower, but still on the move. Therefore, the “wait and see” attitude is not valid! Warner equated it to a fire in your house… it may be confined to the bedroom, but eventually, it grows larger… even though it’s small and only in one room, if you don’t make an effort to extinguish it, it will take over the entire house!
Warner has suggested a course similar to that of Dr. Woltering’s. We’ll try to debulk the tumors in a variety of methods, including surgical intervention and liver directed chemical therapies. This isn’t meant to remove all the Cancer, which is not feasible, but to reduce as much tumor burden as possible. In the process, they would also do some exploratory work to see what else is going on. Furthermore, they will save the tumor material for laboratory testing. That is, to see what the cells react to best in the lab. The surgery may include removing a section of my liver, which as you can imagine, will not be fun. I’ve decided that the best place to have the surgery will be in NYC under Dr. Warner’s care. That means I’ll have to be in NYC for at least 2-3 weeks for recovery, assuming all goes well. At this time, the plan is to complete the EUS, then review the case with the surgeons at the end of August. Warner expressed that the procedure should take place no later than the fall. I’m hoping we can do it sometime in Mid-Late November?
That pain in my side: during my physical evaluation, I showed Warner where I was having pain in my side. Afterward, upon reviewing the CT scans, he noted that the highest point of the tumor is in the area where I’m feeling the pain. He explained that there’s (some kind of membrane, lining around the stomach? Or organs, or something?) that the tumor is pressing on. The liver has no nerves, but that membrane does and it’s highly sensitive. –Hence the pain.
So, I guess you can say that I’ve finally “picked a horse…” I will be following Warner and his team for my care and I’m finally comfortable with the answers I’m getting. Will he cure me? No, he’s not a miracle worker… but I know he has the knowledge and experience to effectively manage my care… and possibly give me a few more years, or even decades, rather than just, “waiting and seeing…”
Good Job Anthony!
ReplyDeleteIt sounds like you are making some progress.
When do you go to NYC? Do you still have family in Greenwich? Is that close enough for you to stay there?