Silver linings post doc visit

Well...... If I never went to the hospital for my back last month I would likely have been dead in 2 or so years (we learned this today)..... I'd like to say big thanks to my Suter and moto obsession for fucking me up so good that I'm still going to hospital and docs. If this was not the case I may have wasted some precious time....

Now on to today's visit.........

We met with the liver surgeon today and finally had a much needed direct and “human”discussion. We asked him the difficult “life” questions that we know he doesn’t have definitive answers to, but we incredibly appreciated how honest he was. We’ve been needing a conversation like this.

Disclaimer: I CAN’T EXPRESS ENOUGH that I am obviously not a doctor, sadly :) I am just trying to capture our interpretation, and none of this should be directly affiliated with our oncologist’s words/thoughts. ;)

• There are a minimum of 10 tumors in my liver, spanning across both lobes. (He said he “stopped counting” at 10 😑, I think 17)

• There are likely many more tumors hiding and brewing that even the PET-CT could not detect. It’s just a very, very common scenario with this type of cancer (too small to detect).

• He cannot recommend surgery at this time, based on the number of tumors. Medical treatment to help shrink the existing tumors and to potentially help prevent spread would be the best option. Even with removal studies have shown that these types can and will continue to return......

• Being that the cancer is also in the peritoneum (the membrane), makes surgical resection even a less likely option. Medical (non-surgical) treatment would be best to try to help tame all of the tumors, wherever they are located.

• The three oncologists will now convene to decide what the best medical treatment plan will be. TBD. (Still need the small intestine surgery regardless.)

• This is considered stage four cancer. HOWEVER, neuroendocrine stage 4 is not necessarily the same as other types of stage 4 cancer. Neuroendocrine tumors tend to grow/spread slowly. Based on the size of the main liver lesion from the 2021 scan to the size on the scans today, he considers this not necessarily be slow-growing, but not super fast either. Moderate. We will know much, much better, 6-12 months from now, when we can see how they respond to treatment. This likely/hopefully is not the type of cancer that would multiply 3x between scans 6 months apart. We just won’t know until time passes.

• This type of cancer with metastasis is not curable. I’ll need treatment for the rest of my life (however long that will be). When tumors can’t be removed, the focus is on managing treatments designed to slow or stop its progression.

• Going to get into the uncomfortable, honest and upsetting conversation of life expectancy. This cancer will ultimately kill me at some point (barring any other unexpected and unrelated causes of death like… ahem… motorcycle accidents).

• Worst case (but very unlikely) scenario, is a 2-year survival. 5-10-15 years is sounding a bit more realistic. 15-20 on the super optimistic side. Sounding like 30 years is pretty much off the table. but again… SO impossible to know at this point. Also, who the F knows what other treatments might become available over the next few years. Bottom line is that we really can’t know much about realistic life expectancy until 6-12 months from now. We have to see how the tumors respond to the treatment, and then we’ll have a better idea.
  

We told the doctor that we wanted to know honest and realistic chances of survival — if there is a decent chance I will not survive longer than 3-5 years, we’d like to make some major changes in our lives so that I can live my best life. He said he understands completely…let’s plan for the worst and hope for the best, but let’s please wait 6-12 months before making any rash decisions. Things do change/happen.

Although we’re grateful to be at one of the best cancer hospitals in the country, we are still of course going to get a few more opinions — explore other treatments (immunotherapies, clinical trials, etc etc etc), but this is the information we have as of today.