The waiting game continues

So, long story short, even though my scans in September showed “numerous” new tumors in my liver, lymph nodes, spleen, abdominal cavity, and right breast, my oncologists think I still don’t yet have enough tumor load to merit another surgery and/or a new treatment called PRRT (Peptide Receptor Radionuclide Therapy). I am both frustrated and relieved by this. On one hand, omg-can-you-just-get-rid-of-the-tumors-in-my-body, but on the other hand, I’m grateful for any reprieve before I get to have before enduring another brutal surgery.

Something important to note is that my oncologists are taking into consideration the fact that the recommended lifetime max number of PRRT treatments is four, and after that your radiation limit is hit, for life. (Although, in my LACNETs support group, I’ve heard of some oncologists who authorize more than four, but that is unusual. Experts in this small field of rare neuroendocrine cancer don’t always agree, and that can be frustrating to patients. The best we can do is find a care team to trust. I’m lucky to have such a team right here in Portland.) So, my oncologists don’t want to play the PRRT card until my situation gets more dire.

In any case, I will have more scans in January, and my oncologists will assess me again then.

My job right now is to be as healthy as I can be for when I DO get the ineveitable news “It’s time to have another surgery” or “It’s time to start PRRT”. I’ve been eating healthier, walking on my treadmill, getting sleep*, and drinking water. I’ve never been a big alcohol drinker, but I’ve stopped even social drinking in the name of optimizing my system. The fatigue, GI issues, and flushings continue to be real, and I pay close attention to my body for signs I’m overdoing things.

PS – I’ve majorly updated my “F.A.Q and T.D.L.R” post to answer more questions, so if you haven’t read it in a while, it’s worth coming back to.