Post Mayo update

Ive always hated mayo.... such a gross condiment....you’re wrong....you wont convince me. Wow this place was f'n amazing..... Such a cool setup.... spans city blocks all connected unground by their "subway". No train but tunnel system that connects all the buildings, hotels, restaurants etc. Quite an experience.

Its's been a crazy few weeks, so here's everything in one place.

At the recommendation of MSK I decided to get a second opinion at Mayo Clinic, There is a world renowned Doctor there that truly is a master with NETs.  I really wanted to get more answers on the leg pain and my oncologist felt it was time to seek additional help.  While there I also asked them to review my entire situation.  It’s been over 3 years now since diagnosis so really felt like a good idea.  I love my MSK docs and want to be clear on that. 

The result of this trip has quite a bit of positives but also a decision to make on a major surgery that I knew I would need at some point.  It may be the right time and I am certainly leaning towards it at the moment.   Here is a breakdown of where we are at and what I learned……

Some confusing parts cleared up:

The scans from late summer didn't agree. The August CT said growth. The September PET showed four active spots. The September MRI said two of those spots hadn't changed in size since 2025. Two scans against one.... not exactly comforting.

The Good:

• Mayo's radiologists re-read my earlier MRI and PET and saw NO new or growing disease. This was contrary to what some of the scans read over the last few months. (MSK also confirmed this before my trip to Mayo so everyone is on the same page now)

• Brand new CTs show no sign of the cancer outside the liver. The few tiny spots in my lungs are that are unchanged.

• SUPER amazing that we can say that the HORRIBLE embolizations really did do a good job a stopping progression.  It beat my liver up good and my soul lol but next month will be 1 year since the first procedure and we are still stable…. Win. 

The not-so-good:

• Some liver numbers are still elevated. Mayo/MSK both feel that's an expected after-effect of the embolizations. My enzymes have been going up but seem to have settled.  Bilirubin is still in range (barely) so liver is functioning well. 

• Still no answer on the legs...... over a year of pain now…..f’n over this sh$t!!!!!!

• The tumors are still there. Stable is nice, but I'd like fewer of them ;) Beyond the 25 or so that they can see they know there are a zillion that they can’t see…. so small they can’t be causing too much trouble but just the thought of those fu$#ers being inside of me is so unnerving. 

The "oh boy, big decision" part:

Mayo's recommendation is “debulking” surgery. This entails removing or destroying as many of the liver tumors as they can safely get to, even though they can't get them all and even though things look stable right now. What they can’t cut out they will burn out….Sounds awful lol   This was one of my options day 1, but after going through all the moto crash surgeries there was no way I could have handled this at the time. Mentally or physically.  MSK/Mayo both confirm that this was not a wrong decision and that we never lost any opportunity etc.   Their thinking:

• Removing as much cancer as they can is like setting the clock back.  Could set me up for years of low evidence of disease which should result in less symptoms etc.  

• The tumors make the hormones behind the carcinoid syndrome, so less tumor could mean fewer symptoms. They also think it MIGHT help the legs. A maybe, not a promise.

• The other option is PRRT (the radiation treatment), which carries a small risk of causing a blood cancer later, plus other side effects. They see surgery as the better first move.  At this point I think both Mayo and MSK would agree PRRT should be off the table.  I have to catch up with MSK team post Mayo visit and confirm. Have a feeling MSK will want to just continue to monitor the demons.

Some other info to add:

• Nothing is final yet. I still want to know exactly how much they can take out, how they'd do it, the risks to my liver and bile ducts, and what recovery looks like.  There is still a bile duct issue in my liver that could also be causing some BS. It could also be the culprit in my liver numbers. Have to discuss this with the team further.  Not sure how this would/could effect the surgery. 

• No guarantees. NETs like to come back, so this would not be the last treatment. It may give me years but super common for them to keep popping back up since the cancer is in my neuroendocrine cells. 

• We'll keep working the leg mystery in the background either way.

  
  

So how am I feeling?

Trying to stay positive as usual, but I have been feeling like crap for quite a while.   “Cancer fatigue” is f’n real and the mental bs of this certainly has me weary often.  That on top of the constant pain in my legs is just a lot….. best way I can put….its just a lot……. I dont have the energy I want or need and my ability to “keep on trucking” just seems to be getting less and less….   I think that is why I’m about to lean hard into this.  I dont know what else to do.   If ripping my liver to shreds can give me back 20% of what I was I would take it in a second.    

As always, Love and appreciate you all.... Thanks for checking in and riding this rollercoaster with me. Thanks to Dayna for tolerating my constant bitchiness, my complaining, my grammar, and my inability to send updates like a educated human.  There is a reason I didn’t go to college (well there are a lot of reasons lol)  Will update you all as soon as I know more….. PB