Choices

What to do, what to do?

So after much prodding, I was able to get my MIBG results from my doctor.  My tumors are MIBG avid, which means they would take up radiolabeled MIBG and do some damage to my tumors.

However, while I was waiting for the results, I did some research on MIBG vs. PRRT, and I also applied to the PRRT program in Houston.  I needed a backup plan in case my tumors didn't take up the MIBG.

First of all, let me just say that none of my treatment choices sound like a walk in the park.  I had a very real awakening a few weeks ago.  That awakening was "crap, I have cancer."  This was not a pleasant realization, as I had made it nearly a year without a true understanding of this fact.  (Although I was officially diagnosed in May, I knew in March that what I had was metastatic carcinoid.)  So a year of denial is pretty good I guess.  Obviously, I knew in a factual sense that I had cancer, but it never really dawned on me that it meant anything more than surgery, MRIs, CT scans, Oscans, and a shot in the ass every 21 days.  In reality, none of those things are that challenging, except the first few times.  After your second or third MRI in 9 months, it's like naptime in there.

But in researching MIBG and PRRT, I came to the sudden realization that my options are limited, and most of them suck.  Here are my current options to remove the peritoneal carinamatosis in my abdomen and pelvis:

1)  Surgery.   Um, I don't know what to say here.  I'm guessing that if they didn't take it out the first time, there was a reason.  Like way too much of it to deal with.  The pathology report uses the word "innumerable."  Nuff said.  Some surgeons will actually remove each individual seed....Dr. Pommier said he ended up with "a cereal bowl full" at the end of one surgery.  But there are inherent troubles there too...what if you start picking them off, and like a scab, they bleed?  Then we've opened me up yet again for no good reason.  I have read about people who have had "clean up" surgery a few years after their initial operation, but I don't know that I'm ready for that.

2)  MIBG therapy.  Although this therapy is somewhat effective for my tumors, I don't know if it is the most effective for my tumors.  Yes, it's covered by insurance, but why do this therapy if I just need to do PRRT a year or two down the line.  Also, I have to stay isolated in the hospital for five days until my radiation level comes down.  Yikes.

3)  PRRT.  PRRT has three different forms right now.  In-111, Lu-177, and Yt-90.  From my basic understanding, each one is effective for different size tumors.  The Lu-177 seems to be the one for my size tumors.  Although I'm well versed in carcinoid, I still have a lot of research to do on PRRT in order to make an informed decision.

4)  Chemoembolization.  This is where they go in thru my femoral artery and shoot some chemo into those two remaining tumors in my liver.  I was really dreading this option, but faced with the others, it almost sounds like a walk in the park.

5)  Wait and see.  If my disease is stable on my current medication, can I wait and see what happens?  I have learned the value of the phrase "quality of life" and I like the wait and see attitude, but only if my disease is stable.

So, you can see how my yearlong denial was so rudely interrupted by these pleasant options.

I'm consulting with my local oncologist to find a plan that works for me.  She takes time to listen to me and ask questions, and she has been concerned about the peritoneal disease in my abdomen since before I even knew what the heck she was talking about.  So hopefully she'll help me find the right answer for me.  For now though, I'm banking on PRRT in Houston in July.