I have spent many hours researching Carcinoid Cancer and Neuroendocrine Tumors. I am pretty sure I have put more effort and time into this in the last several weeks than I ever did studying to get my four year degree. In case you weren't aware, this is the Cancer that Steve Jobs (Apple) died of. It has been reported that he had pancreatic cancer. He actually had neuroendocrine tumors in his pancreas. I have learned that many times doctors do not accurately diagnose the type of cancer. Some may call it liver cancer, when in fact it is NETs in the liver. The best way to confirm if a tumor is a NET is with a biopsy.
I was telling a friend today that I think this is the only time in my life that I am thankful for my OCD (Obsessive Compulsive Disorder). I know we all joke about OCD, but mine is a real diagnosed disorder. I have had OCD tendencies since I was about 5 years old. At one point, I washed my hands so often that my Mom was afraid I was going to make the skin raw! As an adult, it has been an annoyance to my family. I tend to over think and analyze everything. I have been known to recite my grocery list out loud many times. Over the years, I have gotten better about controlling some of these issues. Some things, I have had to learn to live with due to my chronic health conditions that don't allow me to have things exactly the way I want them. There was a time when I couldn't sit down if there was even one dish in the sink. Don't even get me started about someone rearranging the pillows on the couch! My point is, my issues drive me crazy. Even though I have learned to keep some of my OCD behaviors from irritating everybody around me, my mind still obsesses. It never shuts off. Ever.
Psalm 139:14
Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.
Your workmanship is marvelous—how well I know it.
I have always wondered why God made me so complex. There are days that I get on my own nerves! It is bad when you don't want to be around yourself! Unfortunately, wherever I go... there I am. How can that be marvelous?
I am learning that God has a purpose for things. I may not always understand it at the time, but His ways really are greater than mine.
He created me exactly the way I am for a purpose. Maybe there is a reason for my madness. Maybe there is a reason that I can't let things go until I am satisfied and have peace about the answer. It has certainly served me well in being diagnosed and finding treatments for my own chronic conditions, some of which are fairly rare and often take years to be correctly identified. Each person is uniquely created by God for specific purposes. Maybe it's time I just accept my quirks as part of God's perfect design and allow Him to work through it.
Billy's VA GI Surgeon called me today. To avoid confusion, I will call him Dr. A. He said "This whole Neuroendocrine Tumor thing is getting blown way out of proportion." He told me that it was not Cancer (although the resident doctor originally told us it was) and that I was overreacting. I explained that I had spoken with several offices that specialized in Neuroendocrine Tumors and was told that it was considered Carcinoid Cancer and would require aggressive testing and monitoring even after it was removed because they often reoccur anywhere in the body. He said it was not going to come back and it was not Cancer. He refused to do any of the standard gastric carcinoid labs and scans that one of the specialist required. He said they were unnecessary and he would not order them or refer us to a NETs expert outside the VA. He wouldn't even refer us to an oncologist at the VA! He told me that he was an expert in Gastrointestinal Diseases and that this little tiny thing was insignificant and all of the things I was concerned about were not relevant and the further testing was unnecessary. He said Billy has Crohn's Disease and that was what we needed to focus on. I told him that I had corresponded with several people who had a NET like this one who were told that it was nothing to worry about and about 5 years later had Cancer in their liver and multiple other areas. I shared storied of how one lady was told she had Crohn's Disease for 5 years until tumors showed up everywhere and she died a few years later. He was not interested in anything I had to say. I asked him why multiple offices that specialize specifically in treating NETs would tell me that this is Cancer if he was so certain it isn't. He said "I guess they just want the business and are being cautious." My first thought was that I prefer cautious to careless. Since he will be the one removing the NET on May 5th, I feel like it is best to hold off on filing any additional requests with the VA that might irritate him further. I want him to have steady hands and complete focus when he removes it and have no desire to try to reason with him any longer. I know he already thinks I am crazy and I am sure he will be talking about me for the rest of the day or longer. That is fine. I can handle that. What I can't handle, is not feeling like we have done everything possible to make sure that IF he needs treatment, he gets it.
This is my husband's life. I want so badly to just believe Dr. A and forget this nightmare ever happened. That is what several others I talked to did, and now their Cancer is in advanced stages. The family and friends of those that have passed away are dedicating their life to raising awareness and sharing their stories so that others might seek answers from qualified experts and be able to live longer and better lives. I am sharing our journey, not just to keep everyone informed and ask for prayers, but because there may be somebody else out there who is just as overwhelmed as we are.
I have no doubt that God will work all of this out somehow. He never seems to show up early and let me know about His plan in advance, but He is always right on time.
As I was typing this, the phone rang. Guess who? The original resident Doctor that told us this was Cancer. I will call him Dr. M. I asked him again, do you consider this Cancer or not? He danced around the question and spent about 5 minutes telling me how what we called it was not as important as how it behaved and what we were going to do about it. I reminded him that he told us his opinion to begin with and it was obvious that he and the other doctor did not agree about what to call it. He said that Doctors sometimes had differing opinions about things but that he trusted the 25 years of GI experience the surgeon has. That being said, he agreed to do a few of the extra tests that we asked about. That is an answered prayer. They will be doing a couple of the labs we wanted as well as taking a better look at the area they believe to be Crohn's. There is a possibility that there could be small Carcinoids in that area giving the appearance of Crohn's Disease. Dr. M said that they would also take more samples to biopsy and look more thoroughly and specifically for carcinoids during the procedure. Dr. M obviously believes this is Cancer, but is not willing to go on record and contradict Dr. A. He did not deny that he said it to begin with. His main concern is that the tumor is completely removed on May 5th. He agreed that regular follow up was important. He said he would check on the Gallium 68 scan, but did not think that the VA had it available. He said due to the size of the tumor, the location, and the slow growth rate, he did not think that the gallium would show any metastasis at this point.
After researching all of this, I believe that he is probably right. However, I still believe in being cautious and don't want this dismissed as nothing when it could be life threatening if more tumors show up later. I have talked to too many people with nightmare stories about this Cancer because they listened to their Doctor when he or she told them it had been removed and was nothing to worry about.
I don't care if the VA Doctors agree on what to call a Neuroendocrine Tumor. NETs specialists clearly believe that all of these carcinoids/NETs have potential to be highly malignant. They are hard to diagnose because they are often really small and not easily seen. They don't generally cause symptoms until the cancer is in advanced stages. To complicate matters more, some malignant NETs may look benign under a microscope. In the past, the tiny ones like what Billy has, were considered insignificant. In recent years, they have learned that even though these cancers are slow growing, it is important to carefully treat and monitor every NET patient. This is true even when the NET is localized and completely removed with surgery. Many times they recur years down the road. If the doctors are not actively looking for them (and sometimes when they are), they may miss them until the tumors grow larger or there are many smaller ones that can be detected through regular imaging.
Carcinoid Cancer and Neuroendocrine Tumors are extremely complicated. It appears that no case is ever the same. One of the nurses I spoke with said they call them "neuro" because they are smart and "endocrine" because they come from endocrine cells and can go throughout the body. I would imagine that the Doctors that have decided to specialize in this type of Cancer make my little OCD tendencies look silly. You would have to be extremely dedicated, detail oriented, and honestly very obsessive to ever wrap your mind around this stuff. I understand the basic concept, but this is WAY above my level of education or comprehension. The tumors can be slow growing and then without warning become highly aggressive. They can be localized and then spread to just about anywhere. They can be removed and may come back 6 months or 6 years later. Nobody knows how these cancers will behave. It depends on so many different things. Each patient is different. Each cancer is different. Each treatment and follow up plan must be customized.
The biggest mistake patients and doctors make in dealing with carcinoid cancer is underestimating the neuroendocrine tumor. Failing to recognize it's malignant potential, unpredictable behavior, and ability to go unnoticed for years can have deadly consequences. The lack of knowledge and understanding makes this cancer scary. It is also unnerving to know how often it is missed even with advanced scanning and tests.
There is a silver lining though. The good news is that like most cancers, if it is identified in the early stages and can be removed surgically, there is a chance that it won't return. If it does recur or spread to areas where surgery isn't possible, there are several effective treatment options. Each situation is different, and some people don't respond as well as others. However, there are quite a few cases of it being managed well for years, sometimes decades! Praise God for that! Because people are raising awareness and patients are learning to be their own advocate and seek the advice of experts, more patients are able to live longer and more active lives!
God has led us to the right information and doctors. He is opening doors and guiding our steps. He even opened the hearts of the VA Doctors. Dr. A completely refused any additional testing and made me feel like a complete idiot. Only a few hours later, Dr. M called and said he and Dr. A discussed it and they would like to take a second look and would be willing to do a few additional labs and biopsies. This is progress! Thank you, Lord!
Since the CT Scan was ok, I am beginning to feel more hopeful that this is a localized tumor. It will be removed on May 5th. If there are other small tumors that were not detected, then I am confident that they will be found and somehow God will make the appropriate treatments available if and when they are needed. We sent all of his records to specialists in Colorado and Louisiana. If Dr. Liu still agrees to see him after reviewing his entire medical file, we will make an appointment to go to Colorado. He treats much more serious and life threatening cases than what we are facing at this point. If Billy only has one and they remove it, he should not need any treatments. He will only need consistent follow up to catch any additional tumors that may arise in the future. If Dr. Liu is comfortable that it is not an active threat after it is removed, then he may just recommend a follow up plan that he or the VA can do. We will know more after they remove it on May 5th and we get the results from the pathology report from the biopsies they take then.
If you are interested in more in depth information on NETs, please click on this link for the Healing Net Foundation's website and download the NET Primer.
https://www.thehealingnet.org/healthcare-professional-resources
In the beginning of my quest for knowledge, many people asked me if my obsession with this was healthy. I understand why they may think that and I truly appreciate their concern. For many people, weeding through hundreds of hours of medical journals, research reports, and expert opinions may cause unneeded anxiety. I am weird. This process has actually helped me. Because of the way my mind works, I need to have every single detail I can get. The good, the bad, and the ugly. I need to know and understand what I am dealing with. After I have time to consider all of the information, I am able to make an educated and informed plan for the future. That comforts me and helps me to focus on dealing with solutions to the problem rather than allowing the unknown to drag me into "what if- worry mode".
A few people suggested that I just trust the Doctor and accept his opinion of it not being Cancer as good news. Since we got conflicting opinions from the doctors at the VA, I was not comfortable with trusting either of them blindly. We had no previous history with them. As we researched the NETs and realized it was rare, we felt that it was more important than ever to search diligently for answers. I believe that the VA Doctors are probably very good doctors and intend to provide the best treatment. However, some cases require further investigation by Doctors who specifically deal with the issue at hand. In our case, a rare neuroendocrine tumor. Doctors are human. They are capable of making mistakes.They work long hours and may miss something like NETs because it can appear so harmless. I think that a healthy understanding of your personal health issues and those of your immediate family are appropriate. I believe in being your own advocate and in seeking answers from experts when necessary.
The Bible talks about gleaning. God directed property owners to allow the orphans, widows, and less fortunate people to go behind them after their initial harvest and gather the leftovers. God always provides a way. What always stuck out to me was that he expected the needy people to work for what they got. He told the property owners to allow them to gather the leftovers. He did not expect that the property owners would gather it and just hand it to the people...
I feel like he leads us where we need to go, but He expects us to do the work. He prompted me to look for answers and information through my feelings of unrest.
Once I started diving into this stuff and trusting him to guide our steps, He gave me complete peace about whatever the future holds. It is ok to question things. It is alright to question people who are more educated than you. It is appropriate to be informed about medical conditions in order to make the best decisions for care and treatment.
Some patients are completely confident in their doctors opinion and ability no matter what they are facing. That is great. They may not have a desire to learn more about their condition. It may cause them more anxiety to know the research and technical details. That is ok too.
What matters is that each person has peace about the road ahead. God created all of us different for a reason. I think those unique qualities make us uniquely qualified to deal with whatever life throws at us, and to fulfill His purposes through it all.
We appreciate every single prayer, card, email, call, text, and words of encouragements. We are blessed to have so many thoughtful and concerned people in our lives.
Sometimes, I feel the closest connection to God when my life feels completely out of control. It is during those times that I truly understand my need for Him. I am so thankful for His constant presence in the chaos. My God is an Awesome God! If you don't know Him, I would love to share Him with you... just ask!
After researching all of this, I believe that he is probably right. However, I still believe in being cautious and don't want this dismissed as nothing when it could be life threatening if more tumors show up later. I have talked to too many people with nightmare stories about this Cancer because they listened to their Doctor when he or she told them it had been removed and was nothing to worry about.
I don't care if the VA Doctors agree on what to call a Neuroendocrine Tumor. NETs specialists clearly believe that all of these carcinoids/NETs have potential to be highly malignant. They are hard to diagnose because they are often really small and not easily seen. They don't generally cause symptoms until the cancer is in advanced stages. To complicate matters more, some malignant NETs may look benign under a microscope. In the past, the tiny ones like what Billy has, were considered insignificant. In recent years, they have learned that even though these cancers are slow growing, it is important to carefully treat and monitor every NET patient. This is true even when the NET is localized and completely removed with surgery. Many times they recur years down the road. If the doctors are not actively looking for them (and sometimes when they are), they may miss them until the tumors grow larger or there are many smaller ones that can be detected through regular imaging.
Carcinoid Cancer and Neuroendocrine Tumors are extremely complicated. It appears that no case is ever the same. One of the nurses I spoke with said they call them "neuro" because they are smart and "endocrine" because they come from endocrine cells and can go throughout the body. I would imagine that the Doctors that have decided to specialize in this type of Cancer make my little OCD tendencies look silly. You would have to be extremely dedicated, detail oriented, and honestly very obsessive to ever wrap your mind around this stuff. I understand the basic concept, but this is WAY above my level of education or comprehension. The tumors can be slow growing and then without warning become highly aggressive. They can be localized and then spread to just about anywhere. They can be removed and may come back 6 months or 6 years later. Nobody knows how these cancers will behave. It depends on so many different things. Each patient is different. Each cancer is different. Each treatment and follow up plan must be customized.
The biggest mistake patients and doctors make in dealing with carcinoid cancer is underestimating the neuroendocrine tumor. Failing to recognize it's malignant potential, unpredictable behavior, and ability to go unnoticed for years can have deadly consequences. The lack of knowledge and understanding makes this cancer scary. It is also unnerving to know how often it is missed even with advanced scanning and tests.
There is a silver lining though. The good news is that like most cancers, if it is identified in the early stages and can be removed surgically, there is a chance that it won't return. If it does recur or spread to areas where surgery isn't possible, there are several effective treatment options. Each situation is different, and some people don't respond as well as others. However, there are quite a few cases of it being managed well for years, sometimes decades! Praise God for that! Because people are raising awareness and patients are learning to be their own advocate and seek the advice of experts, more patients are able to live longer and more active lives!
God has led us to the right information and doctors. He is opening doors and guiding our steps. He even opened the hearts of the VA Doctors. Dr. A completely refused any additional testing and made me feel like a complete idiot. Only a few hours later, Dr. M called and said he and Dr. A discussed it and they would like to take a second look and would be willing to do a few additional labs and biopsies. This is progress! Thank you, Lord!
Since the CT Scan was ok, I am beginning to feel more hopeful that this is a localized tumor. It will be removed on May 5th. If there are other small tumors that were not detected, then I am confident that they will be found and somehow God will make the appropriate treatments available if and when they are needed. We sent all of his records to specialists in Colorado and Louisiana. If Dr. Liu still agrees to see him after reviewing his entire medical file, we will make an appointment to go to Colorado. He treats much more serious and life threatening cases than what we are facing at this point. If Billy only has one and they remove it, he should not need any treatments. He will only need consistent follow up to catch any additional tumors that may arise in the future. If Dr. Liu is comfortable that it is not an active threat after it is removed, then he may just recommend a follow up plan that he or the VA can do. We will know more after they remove it on May 5th and we get the results from the pathology report from the biopsies they take then.
If you are interested in more in depth information on NETs, please click on this link for the Healing Net Foundation's website and download the NET Primer.
https://www.thehealingnet.org/healthcare-professional-resources
In the beginning of my quest for knowledge, many people asked me if my obsession with this was healthy. I understand why they may think that and I truly appreciate their concern. For many people, weeding through hundreds of hours of medical journals, research reports, and expert opinions may cause unneeded anxiety. I am weird. This process has actually helped me. Because of the way my mind works, I need to have every single detail I can get. The good, the bad, and the ugly. I need to know and understand what I am dealing with. After I have time to consider all of the information, I am able to make an educated and informed plan for the future. That comforts me and helps me to focus on dealing with solutions to the problem rather than allowing the unknown to drag me into "what if- worry mode".
A few people suggested that I just trust the Doctor and accept his opinion of it not being Cancer as good news. Since we got conflicting opinions from the doctors at the VA, I was not comfortable with trusting either of them blindly. We had no previous history with them. As we researched the NETs and realized it was rare, we felt that it was more important than ever to search diligently for answers. I believe that the VA Doctors are probably very good doctors and intend to provide the best treatment. However, some cases require further investigation by Doctors who specifically deal with the issue at hand. In our case, a rare neuroendocrine tumor. Doctors are human. They are capable of making mistakes.They work long hours and may miss something like NETs because it can appear so harmless. I think that a healthy understanding of your personal health issues and those of your immediate family are appropriate. I believe in being your own advocate and in seeking answers from experts when necessary.
The Bible talks about gleaning. God directed property owners to allow the orphans, widows, and less fortunate people to go behind them after their initial harvest and gather the leftovers. God always provides a way. What always stuck out to me was that he expected the needy people to work for what they got. He told the property owners to allow them to gather the leftovers. He did not expect that the property owners would gather it and just hand it to the people...
I feel like he leads us where we need to go, but He expects us to do the work. He prompted me to look for answers and information through my feelings of unrest.
Ruth 2:17
So Ruth gathered barley there all day, and when she beat out the grain that evening,
it filled an entire basket.
Some patients are completely confident in their doctors opinion and ability no matter what they are facing. That is great. They may not have a desire to learn more about their condition. It may cause them more anxiety to know the research and technical details. That is ok too.
What matters is that each person has peace about the road ahead. God created all of us different for a reason. I think those unique qualities make us uniquely qualified to deal with whatever life throws at us, and to fulfill His purposes through it all.
We appreciate every single prayer, card, email, call, text, and words of encouragements. We are blessed to have so many thoughtful and concerned people in our lives.
Sometimes, I feel the closest connection to God when my life feels completely out of control. It is during those times that I truly understand my need for Him. I am so thankful for His constant presence in the chaos. My God is an Awesome God! If you don't know Him, I would love to share Him with you... just ask!
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