Participatory Medicine For Carcinoid Cancer Treatment

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

Enough Complaining

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 – – 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.

Stay Strong,

Ed – To find out how to use my images on your blog for free – Click Here







  1. Hi Ed, I have the same problems with my liver and they could not operate or ablate them. I have had the hemicolectomy, look into luteium radiotherapy, newer and seems better than DOTA and which has been superceeded by luteium here. It seems to no longer be recommended treatment since 2012. Do a search and see yourself. I am in England. I have one more to go series of 4 and feel much improved and all my symptoms have reduced.

    I met the first man to go through the treatment here and he said it was miraculous as he could barely walk when he started. His tumours have all shrunk and he looked and acted very well. Too soon for me to say much but definate relief of symptoms. good luck to you Ed stay calm Christine

  2. Hi Christine,

    Hmmm….stay calm…..I am naturally hyper….type a personality….I wake up with a brain full of stuff every night!!! 🙂 I’ve never heard of any of the things you wrote about…DOTA or the other treatments. Can you point me in the right direction?

  3. The hyper is part of neuroendocrine disorder. Well known effect. My hyper, anxiety and wake up at night and start to do important stuff was all controled overnight by lanreotide injection. That is also known as Somatuline Autogel. I am on 120mg recently after 4 /5 years uped to three weekly from four. One of the hormones you chuck out keeps you going when you shouldn’t. Anything that gets adrenalin going is bad. Too much literally rots your brain. Hence the stay calm. Stress can bring on carcinoid crisis because of too much adrenalin.

    Some people come straight off Somatuline it as you can get side effects of diarrhoea and gut or liver pain; it is worth persevering it goes away as a very experienced net nurse advised me. I could not sit down and watch tv I had to keep getting up and doing things. I was classically overactive in a very bad way. I was doing a phd and sitting at the computer all night. I could not switch my brain off. I now know my jab is due because I sleep badly for a couple of days! only a couple of days! I had years of no sleep about 25 actually.

    I tried to get this info to you somewhere else but it must not have got to you. type in:>LRPC>BINDERNS63
    There’s other stuff after that tha won’t show. I have it in pdf if you can tell me how to get it to you. If you type in Christies or Royal London Free Hospital they both do it and have information sheets.

    This treatment is the way to go. They say you loose your hair the other guy didn’t, I didn’t just thinned out a bit and I haven’t felt sick. Just better. I have caught sinus infections which i am prone to but I feel better. The other guys tumours had shrunk. I don’t expexct mine to, but you never know. I feel better, better quality of life. He got back out of a chair and off sticks. I can go out and about on my own again. Shopping!!!! I Even managed a long weekend away. Better times with your son is what i am thinking. You can get multiple sets of fourish treatments; about year apart I am waiting for my next treatment now 4 of 4. My first round. Forget DOTA it is finished with now for most patients from what I have read. it will also be on Christies and Royal London web sites if you want the info.

    I found a load of stuff about alternative therapys on the Uk Cancer Research Site yesterday. Very good and discusses the one that relates to bitter almonds apricots. I also has mainstream treatment information worth reading. If you cannot get it I would make docs and email you it, you would need to send email address.

    I read about your heritage with great interest I am doing my partners family tree and it seems he came down from one of the border reivers families. A lot were hung apparently so his lot were all rogues. I always thought so of course!

    best wishes stay calm! and still fight it, luv c

    • Hi Ed link doesn’t work but if you type in http://www.lhsc London Health Sicences Centre and Lutetium Therapy in the search the pdf comes up. I get this for palliative care but they are getting surprising results. Do other searches on it as well. I didn’t note where but there is an article that discusses the unexpected improvements and gives % ratings. like you I like to read the stuff and make my own mind up.Hope this is of help, bye for now c

      • Phew! That was a lot of information. I will take a look at some of this. Right now, I’m am trying to figure out if DCA is worth trying.

Leave a Reply