Tag: colon cancer

First Try at Removing the Colon Cancer

(Note: If you notice some of these posts have more links and technical jargon than usual, it’s because I’ve become incredibly grateful to all the people (like Jim Sease, who I’ll reference below) who have shared their stories and information for people like me, and I want to pay it forward. I hope that if someone in my situation stumbles on this post during a late-night internet search, they might find the word or link they need to help them on their journey.)

Back in October, when my gastroenterologist at Kaiser told me I needed to have the rest of my colon surgically removed, in order to remove a small cancerous polyp, it sounded crazy to me. The polyp was less than two centimeters big. The problem, she said, was that it couldn’t be removed like a normal polyp because it had grown into the scar tissue from a previous troublesome polyp. The scar tissue was so rigid, it would be impossible to lift the polyp from it.

Still, the idea of removing my entire colon seemed extreme. Right? Doesn’t it sound extreme? If a polyp is only couple of centimeters, can’t you just take an inch or two of colon and call it a day? After that, I met with a Kaiser surgeon, and she explained that it wasn’t that simple, because when you cut out part of a colon, you can only reattach it at a point where there’s a good enough blood supply to keep everything working, so, at minimum she’d have to remove all the colon up to the next good blood supply.

I think that just the biggest arteries coming off that central one in this picture are considered “good” blood supplies.

Okay, I could see the logic. But, even as we began to schedule the surgery, I wondered, how could this be the only answer? Then, one late night on the internet, I came across a blog post by Jim Sease called Removing a Large Flat Colon Polyp by EMR without Surgery in which he gives a very generous and detailed report of having a five centimeter polyp removed by an alternative procedure called EMR. Like me, his doctors had recommended removing some of his colon, and as I was doing, he had searched for — and found — an alternative.

From reading his article, I gained enough knowledge and vocabulary to start investigating the possibility of either EMR (Endoscopic Mucosal Resection) or a related procedure called ESD (Endoscopic Mucosal Dissection). Although my doctors at Kaiser didn’t feel I was a good candidate for these, I found a doctor at UCLA who specializes in these procedures along with a newer one called EFTR (Endoscopic Full Thickness Resection) and was willing to take a second look. There were a number of science-y things to consider, that are outlined in this video:

To do the procedure at UCLA, I had to change my health insurance provider during the open enrollment period and wait for that to take effect in January. Then I had to navigate through the new system to get referred to the specialist and then wait for an available date. I was lucky with a cancellation and got a date on January 27th.

On January 26th, I stopped eating and drank my too-familiar bowel-cleaning prep solution, and early the next morning, arrived UCLA. My doctor explained the three things that might happen: 1) He could remove the lesion, and if it was shallow, then I would heal and that would be it. Or, 2) he might remove the lesion, but the pathology would show the cancer was deep, and later I would still need to get a surgery. Finally, 3) he might look and decide I wasn’t a good candidate at all, for some of the reasons outlined in the video.

I was hoping, of course, for the prize behind door number one. I was bracing myself for door number two. Because he had (I hoped) looked at the images taken by my gastroenterologist, I didn’t think he’d pick door number three…

But he did. When I woke up in the recovery room, the doctor visited to let us know that he’d looked, and didn’t think my my case would be helped by any of his techniques. It was a little too big (he measured it at three centimeters) and had concave features. All he’d done was take a few more pictures and another biopsy. In the end, he agreed with my doctors at Kaiser, that surgery was going to be the route for me.

No lie, this news was disappointing. I went home and got straight into bed — both because I’d been up much of the night doing the prep, and because, in general this is my favorite way to deal with disappointing news. After a long nap, I woke up and went for a walk outside. The weather was very nice.

Did I jump through a lot of hoops for nothing? Maybe? But, I’m someone who needs to feel like I’ve really gotten all the information before committing to something life-changing. Now that I’ve been through this, I’m feeling ready to take my next steps… which you’ll get to hear about soon!

I Have Lynch Syndrome

Most people have heard of the BRCA genetic mutations that predisposes its owners to breast and ovarian cancers, especially after Angelina Jolie disclosed she carried the gene in 2013.

Fewer people are familiar with Lynch Syndrome, which causes a predisposition to a number of cancers — primarily in the abdominal region — and is comprised of mutations to a handful of genes that mostly start with or contain the letter “M”, like MLH1, MSH2, MSH6, as well as PMS2 and EPCAM. These genes are involved in a process called mismatch repair. According to the Dana Farber Cancer Institute, they “act like spellcheckers to find and correct the “typos” made in the gene copying process.” When the typos don’t get fixed, the mistakes can replicate and accumulate more and over time this can cause cancer.

Growing up, my father was diagnosed with cancer several times, and we just assumed he was very unlucky. But then, in 2003, I was diagnosed with colon cancer at an unexpectedly early age. After a surgery removing half of my colon, the doctors sent my tumor to a genetics lab where they discovered a MSH2 mutation. Then they tested my father’s blood, and found the same mutation. That’s when we learned we both had “hereditary non-polyposis colorectal cancer (HNPCC),” also known as Lynch Syndrome. Depending on which genes are affected, people with Lynch Syndrome have a higher risk than the general population of getting certain cancers:

General populationLynch syndrome (MSH2)
Colorectal4.20%33-52%
Endometrial3.10%21-57%
Ovarian1.30%8-38%
Gastric0.90%0.2-9%
Bladder2.40%4.4-12.8%
Biliary tract0.20%Up to 1.7%
Urothelial<1%2.2-28%
Small bowel0.30%1.1-10%
Brain/CNS0.60%2.5-7.7%
These are statistics for MSH2, which pertains to me. I took it from this more complete chart by the Jackson Laboratory.

After my first diagnosis, I made lifestyle changes to improve the risk factors that I could control. I stopped drinking alcohol, eliminated or cut down on meat and sugar while increasing my vegetable intake, re-committed to yoga and meditated to keep my cortisol levels down. Maintaining this lifestyle while returning to grad school wasn’t always easy, especially in Los Angeles, where socializing and networking is “part of the job.” When I graduated from Screenwriting school in 2011, I got an offer to be a writers PA on a television show where I’d been interning—a dream scenario, except the job didn’t have health insurance, and pre-ACA, there was no individual coverage for someone with my history. It was hard to pass up that job, and I’ve often wondered how different my career might be now if I had been able to take it…

But I made the practical choice, and, as it happened, having health insurance soon came in handy. In 2012 I was diagnosed with endometrial cancer and my uterus was removed.

Then, after was nine fairly peaceful years, last October (2021), a scan revealed colon cancer. Again.
It felt kind of like getting struck by lightening twice. What are the chances? Turns out, with Lynch Syndrome, they’re pretty high.

Estimates say that about a million people in the United States have Lynch, but that 95% of them don’t know their status. If you have questions about Lynch Syndrome, you can check out the websites of advocacy groups like Lynch Syndrome International, AliveAndKickn.org and FORCE. They are a good source of information as well as encouragement. Many people with Lynch live long and full lives!

(This is a kind of nuts-and-bolts rundown. If you’d like to read a longer essay with more personal and philosophical thoughts, you can check out something I wrote for The Colorado Review awhile back called “Luck, Statistics, Magic.”)

Chemo–What we expect versus what we get…

Was browsing this blog that I really like, and saw this report;

Most falsely believe chemo is curative
According to a study in the New England Journal of Medicine although chemotherapy is the primary treatment for patients with lung and colorectal cancer, it is not curative.

In an American national survey of 1193 advanced-stage patients, 69% of patients with lung cancer and 81% of those with colorectal cancer misunderstood the intent of chemotherapy, mistakenly believed that chemotherapy might cure their disease.

This seemed a little crazy to me, so of course I looked up the original New England Journal of Medicine article.  If you are feeling geeky, you can read it here:  NEJM Article. (It should download as a PDF.)

As you might expect, the rate of misunderstanding was greater within non-white ethnic groups. I’d guess perhaps there were some language barriers (doctors often throw around the term “palliative,” and for a long time, I wasn’t sure what “palliative” really meant). Also, the way serious illness is treated varies by culture.  BUT the rate for white (and I assume English as a first language) patients who thought chemo might cure their Stage 4 colorectal cancer was still 74%, which is high.  Consider: For every demographic, more than half of patients with a terminal illness mistakenly believed chemo treatments might cure them.

And, as you might also expect, the rate of misunderstanding among patients who had lower levels of education was slightly greater…but here again, even among patients who had a college degree or higher 75% still thought chemo might cure their Stage 4 colorectal cancer.

The article brings up several issues to consider and the researchers offer up ideas why this might be. I was interested in the idea that while the oncologists do communicate the truth of the situation to the patients, there tends to be a very quick transition from discussion of the prognosis to discussion of treatment.  I have experienced this myself, where a doctor–I think with all good intent– quickly steers away from the emotionality of a diagnosis, and toward the logistics of treatment.  As soon as we can start talking about the pros and cons of various options and setting up a schedule etc., it starts to feel like we are “doing something.” This can be comforting and work as a coping mechanism to get you through that first appointment, but the authors here (based on yet another study ) propose that this focus on treatment can lead to false optimism–and I have a tendency to agree.

I can imagine there is a great temptation to bolster a patient’s morale. And I even believe that good morale can help extend someone’s life…but this kind of misunderstanding ultimately takes control from the patient. 

If a chemo is going to extend your life by a few months, but you’re going to feel terrible for much of that time, do you want to it?  It seems like people should get to make that choice.  People should also have time to come to terms with the end of life, to do what things they can to put their affairs in order.  Finally, for those who are truly committed to trying to beat the odds– given the information that conventional means are not likely to cure they might want to try alternative means to prolong life–be it diet, meditation or whatever. And regardless of outcome, it could be argued that a by-product of these alternative practices could be a better life–or a more peaceful end of life.