My Cancer is a Mutant

I’m walking a tightrope between relief and uncertainty.

On November 6 I had a malignant tumor cleanly removed from the ascending or right side of my colon. Believe me, it makes a difference.  Cancers on the left side are different!   About a foot of my colon was removed.

I’d had to fight with the protocol of the 3 surgeons I’d met with to stand up for this surgery.  My history with Ulcerative Colitis typically mandated removing the entire colon.

I wasn’t having that.  After all, I’d managed my UC for 15 years by changing my diet to anti-inflammatory and gluten free and had only one major flare in 2017 when I started dialysis.

With all 3 surgeons I’d stood firm and the 3rd one, a woman, met me where I was standing and agreed to bet on me, not statistics.

She was super pleased by the surgery.  My tumor, who I’d lovingly named Pearl, came out easily.  The surgeon was happy that my colon was healthy and she was able to put me back together easily!

I think she’d been certain my colon would have been so ulcerated, she wouldn’t be able to.  Ha!  I showed her 🙂

And then I waited.  She’d taken out 23 lymph nodes.  Could I dare hope they’d be free from cancer? Having already had two kidney transplants and other major life challenges, I was hoping this life lesson might be, shall I say, less complicated?

On Thursday, November 16th, I finally got my pathology report and the news that in addition to a clean surgery, my lymph nodes were all clear of cancer.

I celebrated but something seemed muddy.  Like there was something else I would find out.

On Sunday, I learned what it was.

That pathology report contained information no medical professional had called out.

It took me meeting a woman who’d had the same cancer as mine to help me understand.

My cancer, along with hers, had a gene mutation called BRAF – pronounced Bee-Raf.  It can cause cancers to grow more quickly than ordinary.  Although there are new blood tests and scans to catch new growth, as well as effective targeted treatments, this mutation can be pretty serious for people at stage 3 & 4 where the cancer has metastasized.

She was diagnosed Stage 4 – her cancer had metastasized to her liver.  And even after a tumor had been taken out, once, another grew back in two months, between blood tests.

Her light shone brightly for me though when she told me how great she was doing now and  how those blood tests and scans had worked so well for her and her treatment had her clear of disease for maybe 2 years.

And while she was a light, she was also a bearer of grim news.  I didn’t know anything about this whole BRAF thing before her.

And I was sobered.  No, this wasn’t going to be a quick thing.  There are apparently more lessons for me to learn.

I’m stage 2.  Clean margins all the way around the tumor, Pearl.  But when she was removed, there’s evidently a distinct possibility microscopic bits sloughed off and are floating around in my bloodstream.

Does that mean they’re ready to grow into a tumor?

Very quickly?

Wow… OK, new news.  A moment of uncertainty and then Henry and I go into major investigation mode.

Apparently I’m in a really great place and may not need treatment.  Just observation.

My next step is tomorrow, November 28th when I meet with my surgeon.  We have a ton of questions for her.  Anything from when can I start eating fiber again to what’s her understanding about BRAF?  It’s possible she may know very little…I’m hoping if she didn’t, she did her own research when it came up on the pathology report.

I was introduced to www.onecancerplace.com. I’m also connected into www.Colontown.org a community of 9,000 colorectal cancer patients or caretakers.  It’s subdivided into more groups than I could have ever imagined…from all women to those with right side, ascending cancers.  See, I told you it makes a difference!

It’s a place to ask lots of questions and get some more answers.

Then on 12/5 I’ll meet with a GI specializing oncologist, who’s evidently worked with BRAF patients and we’ll start a discussion about what’s next.

With a history of Ulcerative colitis but particularly as someone who’s also immune compromised from my kidney transplant, I’ll be a candidate for thorough planning for how to move forward.

Will the suggestion be to chemo or the like to kill off any of the bits before they might take hold somewhere?  I’ve learned there are some good treatment options but some have to be used AFTER chemo as the first line of defense or the insurance won’t pay.

I’ve been encouraged to get multiple opinions and to keep learning more about options and objectives.

Over the weekend when Henry and I were researching, we found another local GI oncologist who’s also worked with the  BRAF mutation.  Only when I called today to set up an appointment, I discovered he’s retired.  The scheduler I spoke with wasn’t sure if their hospital system had any GI specialists who’ve worked with BRAF.

I was supposed to hear from her colleague after lunch.

It’s 5:30 pm.

There’s a woman doctor at Sloan Kettering in NY who’s worked extensively with BRAF, even leading trials etc.  With her depth, I’d be really interested in her take on how to move forward with all of my special issues.

Only they don’t do Telehealth for Missouri.  And apparently neither does MD Anderson in Houston or City of Hope in California.  They all want new patients, even those wanting a second opinion, to come there.

And stay for 3-5 days, in the event of needing further testing.

I haven’t gotten on a plane since 2019.  We’ve only just started thinking about travel…but it would be a vacation, not for a treatment opinion.

Stuff to consider.  Hoping the guy next week is just what I need.

I’ll write next about what I’m doing in the meantime.  What are the biggest challenges and how do I stay in Joy when I have no answers?

The perils of a control freak LOL!!