Door #2 on Let's Make a Shitty Deal

 All right. Finally saw a pancreas specialist. I'm so glad I did that as I have a much better understanding now as well as continuity of care set up.

First off, the MRI report was a little confusing and unclear which led me a bit in the wrong direction. The specialist went through the MRI images and reviewed them and explained what was actually going on. So things are somewhat better than they appeared in the report.

It's a branch IPMN.  These are most commonly found in men between the ages of 50-60 of which I am neither. 

It's approximately 1.5cm. Which, for reference, the clinic I went to starts getting serious at 2cm. Normally the threshold is 3cm, but they told me they're more aggressive.

The MRI report read like it was a more serious type of cyst that had started to spread as well as grow.

That said, an IPMN is still precancerous just not the most serious degree of precancerous it could be. 

I am still in the ongoing monitoring category, which was one of my questions.

And blood work has been ordered to check for cancer markers.

From there, if it continues to grow or develop what's known as 'worrisome features' but stays too small for immediate surgical referral, we get into an EUS with biopsy and potentially some additional, experimental blood work. That was another of my questions, was I at the stage of needing an MRCP or EUS? Based on the MRI report, I wondered if I needed an EUS, but no, right now, it's MRCP.

Or it's stable and we keep doing MRCPs (I just can't get away from MRIs...we keep adding more. Ugh.).

Or it becomes a clear candidate for surgery. 

My case will next go to their version of a tumor board for review, but the expectation is that the plan won't change. 

Based on location, if it ever needs surgery, it would be a Whipple, which if you don't know, is a major surgery with a major impact on your ongoing quality of life. The idea of this surgery is my boogey man. Death sucks, but it ends. A Whipple keeps you going, but it's a hell of a precarious slog.

However, prognosis is good. 80-90% survival rate. Mostly because of early detection and follow up. Which I knew from my reading, but I will say, I had to dig pretty hard to find that. The most common search results are stats on more advanced pancreatic cancers and the numbers for that are pretty dismal.

That said, IPMNs tend to reoccur. So if I ended up having a Whipple, another IPMN could show up in the remaining pancreas. There's clearly a systemic process involved, but they don't know yet how it works. So...that's not ideal.

Oh, and IPMNs can apparently hork up loogies and give you pancreatitis with their boogers. So I have that going for me...

More seriously, the horking of loogies raises some questions about some of my ongoing symptoms that they've always attributed to the liver. Now the docs have some raised eyebrows. Is it the hepatic adenomas or is it pancreas booger congestion courtesy of the IPMN? Was I actually having pancreatitis independent of the liver in all those ER visits? 

(I don't say much here unless it's really bad, but I have a lot of back stabbing from the GI system anymore. Oddly, sometimes it means I'm hungry. Other times, it means I'd better not eat if I value my life. Such a fun game...)

I told the specialist, I doubted we'd ever know because I'm so quick to stop eating the second I have symptoms, which slams the brakes on the worst of it so far. And the mucous tends to not create a long term obstruction, it tends to process through. So unless it makes me so sick, it overcomes me not eating and forces me into the ER and the ER does the exact right testing (aka an MRI/MRCP/EUS) or admits me so the hospital can do the testing, we'll never know if it's the liver or the IPMN. Fun.

Basically, they'll want multiple MRIs every year until I die or get too old to save. That's a fight club that won't let me go.  I'll continue to see what I can finagle in terms of reducing them as much as I can ( I mean, how much contrast can one body actually take?), but that will probably take a year or so to achieve...if it's even possible which I'm not so sure anymore. Depends on what the next sucker punch is.

I will say...I was never told I had an IPMN. I knew I had a pancreatic cyst, but I was initially told it was a pseudocyst and totally benign and I didn't have enough information to question it. All I knew was it would be monitored incidentally because of the liver so I figured if it made a move, we'd know (which is what happened). Then all of a sudden it showed up in the MRI report with a name and all this growth and it was spreading (which it's actually not). 

Better communication and better radiology analysis would have made this way less stressful. This thing has been there since 2014 and scanned almost ten times by now. It's unfortunate that this is how it played out. I don't feel I was informed at all.

Apparently, this lack of reporting is fairly common. The specialist told me they just had a patient who clearly had an IPMN dating back to 2005 but it had never hit the radiology report for some reason. 

That's...concerning. Yikes. Not good. For anyone.

The other thing I will say, the growth rate is a bit aggressive. They're not concerned as I think the location takes precedence and mine is lower risk (?), but I'm meeting some criteria for rapid growth out there. I'm not feeling antsy about it at the moment, we'll have to see what happens. I'm in that betwixt and between stage yet again...it's not good, but it's not bad enough so now we wait.

Anyway, seeing an expert was really helpful and added a lot of clarity (moral: don't just go by the MRI report), and my plan to compartmentalize and carry on stands. Phew. Once I get used to the idea that I'm now being monitored for pancreatic cancer, I get to party for a bit.

Also, I cancelled the third opinion. I'm torn on whether that's smart or not, but I seem to be falling within the guidelines more than not right now and there's not as much oddball nuance to things as the MRI report had implied. I'm thinking I'll just wait on the MRCP next year and go from there???

Oh, and...my oxygen bounced from 93 to 98 on their pulse ox and back again. Never had that outside of asthma attacks and it's only been since Covid. I didn't sleep well all week for one reason or another, so that's at least half of why I feel like ass right now, but the rest of it is this post covid fatigue whatsit that makes my oxygen bounce like a psychotic bouncy ball. I really wish it would go away.

In trying to get my normal activities up and running news...

-Hand is still swollen. It's improving, but yeah, it's been swollen for a long time. I'm using it pretty normally and it mostly doesn't hurt, but I am avoiding things like push up type pressure still.

-Kicking my own ass session #1 (KMOAS): Deep cleaned the house. Long overdue but OMG I thought I was gonna die. Stamina is still not where I need it to be.

-KMOAS #2: I loaded, unloaded, stacked, and threw firewood (not too heavy, not too big) logs with hubby. With inflation looming, we fixed the chimney and put in a new wood burner in the fireplace last spring in the hopes of saving some on the gas bill  this winter (and it's odorless inside so it doesn't aggravate my lungs). We also scored some raised beds for $10 so we carried those and placed them in the garden...they have the hoops already set up for bug netting which is awesome. Good functional workout, but I was done for the day after that. Again, stamina is an ongoing issue.

For contrast, hubby does all that plus mows two acres and paints the dresser that will be the bathroom vanity and runs to pick up some pallets that he loads and unloads by himself and then helps the neighbor move furniture and and and. Sigh.

-KMOAS #3 I've planted more irises and now tulips too. And yes, it IS getting late in the season to do this. Yup. Definitely not ideal. Oh well. I have about 1/4 acre strip that I want to look something like this someday:

I have about 20% of the skill set needed to actually do this, but I figure if I keep slamming flowers into the ground, something good will happen.

And yes, I've planted a concerning 'are you okay?' amount of irises. Over 70. I should've gone for 100...I feel like I half assed it now lol. But remember! I've got a massive area to fill. I'm hoping they'll spread from here.

And also yes, it cost a small fortune. Sort of. At least 50 came from a Chinese vendor masquerading as a "family owned US nursery." I'm not usually one to get suckered by those sham sites, but this one got me. I should've known something was up when I saw the crazy good price. When the receipt hit my email and was all Chinese, my stomach sank. 

I figured I'd never receive a thing or they'd send me plastic irises or something. But no, they did send actual irises. So not as expensive as you might think, but definitely strange and not recommended.

-I carried multiple ten gallon buckets of wet af mulch into the garden to fill my garlic pots. I can't believe it, but I'm still waiting on my garlic order. Ugh. Also that pissed off my snowflake spine so...Advil is my BFF.

-I'm eating relatively normally and consistently at the moment. It's very nice. I highly recommend it. Five stars.