Quick Update on Surgery

I can't believe I've been home for almost a week!  It'll be a week tomorrow.  My surgery was not quite as we planned.  Instead of taking my entire right lobe, he cut out the biggest tumors. He did take a few sections from the left lobe that had the biggest tumors and then did RFA on a few.  I was actually pleased with this news.  It has made my recovery much easier and should give me those extra years we were hoping for.

I did on have any drains when I woke up. No NG tube.  I really didn't feel too bad.  They did take me to ICU for one night to keep a close eye on me.  A few days later I asked Dr. Kim if he had any trouble with my blood pressure or "stats" during surgery and he said I was "steady eddie".

When I arrived in pre-op it went a little crazy as I was the last patient they took back (not my fault--I was on time along with 30 other people) and they were ready for me!  I had two anesthesiologists, 3 of Dr. Kim's Fellows, two or three nurses, all doing stuff to me.  IV's, blood, EKG.  I did ask the anesthesiologist if he used "octreotide" during surgery and he said, yes, we will.  I felt much better about things after being assured of that.  I had 3 IV's one in each wrist, one in my elbow and then they put a jugular line in during surgery.

I'll post more details tomorrow.  Just wanted to give a quick update.

Surgery vs. Y-90 Sir Spheres

I need to update you on what Dr. B. the liver surgeon, told me!  I met with him last month.  He felt that the left lobe of my liver was enough to "support" me--keep my alive while my liver regenerates.  I do have 3 tumors in the left lobe but he could do radio frequency ablation (RFA) on them.  It is a small probe that uses heat to "cook" the tumor(s).  Whew, sounds like a MAJOR surgery and I know it has risks... my biggest problem is that my insurance won't pay him, not even out-of-network.

I did have my blood work done and a CT Scan last week.  Blood work is good.  My liver function is still 100%.  My Chromogranin A (CgA) went down from 249 to 111.  CgA is a tumor marker and can go up with tumor growth.  We also did a Pancreastatin blood test, which is an even better tumor marker for the liver but it hasn't come back yet.

Even though my CgA went down, my CT Scan showed a small increase in all the tumors in my liver.  Not a lot, a few millimeters.  I'm concerned that I had any growth at all since this is supposed to be a slow-growing cancer and its only been four months!  I was a bit surprised and I am worried that this cancer is going to be more aggressive than thought.

I met with my oncologist this past Tuesday.  I was pretty nervous since I had no idea how he would feel about me having gone to see Dr. Belnap!  I shouldn't have been...  he was very positive about it and seemed pleased that Dr. B thought I was a good candidate for surgery.  He knows, however, that my insurance won't pay for him to do the surgery.  He said we had a few options.  He can send me for a consultation with another liver surgeon in-network and then if they don't want to operate, I can appeal my insurance's denial and I can fight them to get Dr. B approved to do it.  There is a chance they may just want me to go to someone else, out-of-state, like Dr. Pommier in Portland who is a Carcinoid Specialist.  I would love to go see him but don't really want to have surgery out-of-state.  I know a lot of us "noids" have too though so I would do it if it came down to it.  My other option, and the one I am leaning towards, is to do the sir-spheres first, then surgery later.  Sir-spheres are radioactive beads that they insert directly into your liver tumors through an artery in your groin.  It's sort of like angioplasty.  They usually do it in three steps.  First, they map you.  They insert the wire and a dye which shows them how your liver is wired!  Just to make sure they can get to the tumors and that you don't have any physiology that would prevent the procedure.  The second step is actually inserting the radioacive beads to 1/2 of your liver.  Then you wait--I'm not sure how long but it's weeks. Third, they go in and do the other half.  I know of several fellow patients who have had this done.  Some have tumor shrinkage and even tumor necrosis (death).  It can also just stabilize them from growing.

The plan:  I am going to wait until after my next scan to do anything.  We decided to see what my tumors do over the next four months.  I'm not 100% sure this is the best plan.  Part of me wants to be more aggressive right now and the other part says, wait a little while longer and see if the Sandostatin stops the tumors from growing.  Plus, if I wait, I'll be closer to July 1st when I can change my insurance to another carrier who would be more likely to allow Dr. B to operate (if that's what I want).  There is, of course, no guarantee that a new insurance company will approve anything!

I do feel better knowing we have a "plan".  My Oncologist seemed very positive and was impressed with how much I knew.  We talked about specialists and clinical trials, PRRT, Ga-68 scan, other treatments, etc. He was like, "wow" you know so much!  It is definitely true that you have to be your own "advocate" with this cancer.  So many, many doctors don't know anything about Carcinoid.  I think the word is spreading and we have to keep on getting it out there!  I still feel very lucky that all my doctors have known about Carcinoid and how to treat it.  From the Gastroenterologist who did my colonoscopy, my surgeon and my Oncologist, they all know a lot about it.

I will try to post more often.  I always have a brain-cramp when I try to remember how to get to the right account!  Stay well, be happy and live life to the fullest!