Carcinoid Rollercoaster

A couple of weeks ago, I was all happy about the results of my latest CT scan: News from the Latest Scan.

Yesterday, my wife Laurie and I had a meeting with the surgeon on my team. (Kaiser Permanente HMO assigns a team of oncologist, radiologist, surgeon to you in oncology.) He is concerned with the size of the largest tumor on my liver. His guidelines say that if it exceeds 6 cm (2.4 in), it should be removed. It is just under 6 cm (5.94 cm I think).

He plans to schedule an octreoscan in two weeks. (What the devil is that? Many carcinoid tumors have receptors that pickup octreotide, a hormone. The Nuclear Medicine irradiates octreotide, injects you with it, then takes radiation sensitive pictures of your body with a large scanner.) If your tumors pick up the octreotide, the pictures will show where they are and by brightness how active they are. The doctor hopes to determine how active it is.

The surgeon will meet with other surgeons and radiologists to discuss my CT scan and octreoscan. Together they will decide on a course of action which they will recommend to me. The possibilities from best to worst in my opinion:

  1. Wait 3 months and do another CT Scan.
  2. CT assisted radio frequency ablation. Essentially, they make a small incision, insert a rod. Use a series of CT scans to guide the rod into the tumor. Then they turn it on and it cooks the tumor. Overnight in hospital, with short recovery time.
  3. CT assisted microwave ablation. Same as above except with microwaves. Overnight in hospital, with short recovery time.
  4. Arthroscopic surgery, like knee surgery. It is a smaller incision than full size surgery. Using a camera, they guide a knife to cut out the tumor and upper part of liver. Less risk of infection. Less hospital and recovery time. Don’t know how much less.
  5. Full scale surgery which means a big incision across my body. More difficult recovery. 6 to 10 days hospital. 6 months recovery.

Concerns are:

  1. if they do nothing, it might start growing more.
  2. The very size of it is not good for the liver already.
  3. If they just cook it, the remains are still there. Again the size could be a problem.
  4. If they do arthroscopic or full scale surgery, bile leakage and infection are more of a problem. Recovery can take 6 months.
  5. If they do arthroscopic or full scale surgery, should we also take the gall bladder. WHY? A person like me on monthly sandostatin injections is almost sure to develop gall bladder problems, which would mean pain and another more difficult surgery. More difficult because of scars from liver surgery. Many carcinoid experts recommend just getting it while you can.

Now you know what I know. We will not have recommendations to consider for 3 to 4 weeks. Wheee!!!

Addendum to Carcinoid doesn’t like Chocolate: We spent 5 days in Massachusetts last week touring and going to a beautiful wedding. I ate very little chocolate, but I ate much good food and of course had the physical stress of travelling. By the end of the 5th day flying home, I had lovely diarrhea and cramps going and it lasted about 3 days. Luckily immodium works pretty well for me. It does not work for many carcinoids. I have another family wedding with travel coming up.

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Carcinoid Rollercoaster was last modified: March 8th, 2018 by cy

3 thoughts on “Carcinoid Rollercoaster

  1. A lot of info but I think I get the gist. Still to out of the woods yet. Hang in there.
    That last bit about chocolate was TMI but I am sorry for it.
    Barely made it to the site, not being tech savvy and all!

    See you soon

    1. Thanks Linda,
      Not trying to gross people out with too much information. I just want people, especially people who may have the symptoms and not understand what is happening to search for a diagnosis.
      This disease has no cure. We are never out of the woods.

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