It looks like I may have some new options in my carcinoid cancer fight. Unfortunately, it seems that traditional hospitals and doctors are unable to handle this carcinoid thing. It seems, that no matter how good a particular hospital or doctor is, they cannot seem to break out of the “box” and think differently for a carcinoid cancer patient. I have often heard people say “cancer is cancer” but if you have carcinoid cancer then you know this is not true. As you know I have been seeking more opinions from carcinoid specialists. To date, I have had bad luck finding a doctor who I felt could provide quality medical care for me. True, I like my oncologist but he is really out of ideas and has reached the end of his bag of tricks. Sadly, it seems that if you want good medical treatment then you better start considering using participatory medicine for carcinoid cancer treatment. Another full time job….great.
Participatory Medicine for Carcinoid Cancer Treatment
Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners. – Read More
They are calling it “Participatory Medicine“. To me this is spin for “do it yourself”. Great, DIY Cancer. Personally, I don’t understand why we cannot get quality cancer treatment without becoming experts and doctors ourselves. With the amount of money we pay to our insurance companies, and considering the amount our insurance companies are paying to these institutions, we should be able to walk into a major hospital like Sloan Kettering, Duke, Stony Brook and the like and get well researched quality treatment for our cancer.
This means that now, we must not only care for our families, work our jobs, care for our personal property and care for ourselves but, now, we must muster the physical and mental energies to research, find solutions, read medical journals, participate in message boards, watch YouTube videos and convince our doctors and medical teams of the validity of these treatments. God forbid we don’t find it ourselves…..then we go untreated. Which, for me, is exactly what happened.
Finally, we must find somebody who will treat us with these solutions which is no easy task. For me, it involves traveling to a number of different states. Let me tell you that this is no easy task for my family. We have a 7 year old boy who needs to attend school, have limited income and have no close friends or family living near us because of our recent relocation to another state. It is ridiculous to think that I need to do all of this to get proper treatment for my cancer especially considering the fact that I am being treated at a major cancer hospital and university. So, you must know how I feel about participatory medicine for carcinoid cancer treatment
My wife and I have done the work, found some solutions and doctors who might treat me and we will be working hard to convince our current medical team to give us opinions based on the newer information and not the old standard cancer treatments and information.
I encourage you to read this post. At a bare minimum it will prepare you for the level of effort you will need to exercise this option in your carcinoid cancer fight. Overall, the article is encouraging as it shows his step by step efforts to achieve success in his fight. Believe me, you will be surprised at the level of work needed just to understand the article. If you plan to fight for the best treatment that you can get then get ready to do some work and spend some money.
Found this on CNET – http://download.cnet.com/3028-18488_4-75761171.html?c=CBS-AUS&s=fivemill&pid=dlcom_sem&aid=75761171_12666352034_1206726019&dlc=n&part=fivemill – it is supposed to allow you to read your own scans but I haven’t tried it yet.
Some New Options in My Carcinoid Cancer Fight
My new options include a complicated surgery that includes partial liver resection, recovery, resection of the other half of my liver and removal of the tumors in my G.I. tract and maybe my lymph nodes. My medical records have been reviewed and I have been tentatively approved for this option. I must admit that I am leaning that way. If I choose this option I will be on my way to Nebraska. My oncologist says this is a bad choice for me but chemo has not stopped the progression of the tumors. Also, I am not sure how much this helps form his opinion but he is a standard oncologist and the people in Nebraska are carcinoid cancer specialists.
In the article the author talks about the options after surgery. They are worth reading and I hope may be an option for me.
I consulted a liver surgeon specialized in NET (Neuro Endocrine Tumor) in the USA and a nuclear medicine specialist in Germany on the issue of whether my docs could safely leave behind tumor cells during debulking – known as an R1 resection. I was told most definitely to go for R1 and try to leave organs intact if possible. The rationale is that I had other distant mets which were not targets of the surgery (so attempting R0 was pointless), and that I could opt for PRRT at a later date to clean up small distant metastases. Read More
Update: Since writing this post I have actually returned from Nebraska. After laying out quite a hefty sum of money for travel and lodging, I have found out that surgery is NOT an option for me. As it turns out my tumors are “diffuse” throughout the liver. Diffuse is a term used to describe the fact that my tumors are everywhere and not located in one particular area. So, surgery is not an option for me. I may still be able to get alternative treatments such as embolization. I am still waiting for the final word from Nebraska. One consolation is that they are more aggressive than my current hospital so, maybe I can find something that will slow if not shrink the tumors. (Fingers crossed)
I am also looking into PRRT but after looking into it a bit it seems that this type of treatment only works on smaller tumors and does not really help with larger tumors. I am still open to the idea if it will be effective. In fact, it may be good for a post surgery treatment to try and get some of the smaller tumors. There is a doctor in (Kentucky?) who specializes in this and I am seeking his opinion as well. In addition I am looking into some Clinical Studies and maybe some different treatments from an oncologist who specializes in carcinoid cancer. (Louisiana?) I will keep everyone posted as things develop.
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