Allow me to go on a couple detours before getting into a few particulars of the scan. First, let me say that many of these curious humans don’t understand the need to wear masks during a pandemic. These people simply don’t trust the people who have made a career out of studying pandemics and the spread of infectious diseases.
Of course, being a curious human myself and a proactive patient involved in the decision making process, I’ve recently questioned the need for a urinary stent. A couple weeks ago I practically begged my urologist to simply remove mine instead of replacing it with a fresh one. That stent is very uncomfortable and interfering with my ability to run, which trumps your decades of experience as a urologist treating urinary cancers. Next time maybe I’ll find another urologist who listens to me. This is of course, foreshadowing that it’s probably a very good idea that I still have a stent.
The second detour involves my previous blog post, where I lamented the possible need for radiation, and how radiating my prostate probably would cause side effects that would affect my quality of life, but provide only modest improvement in survival or duration of a remission. After writing said post, I proceeded to rant to my wife about radiation for some time. During this rant it was conceded that radiation could be very useful if there was a single or perhaps a very small number of problematic spots.
Okay, let’s talk about that CT scan, and let’s get the bones out of the way first or I’ll go on about those for pages. The good news is that there’s been no change in the appearance of my bones since the previous scan. But of course, I’m supposed to be beating cancer, shouldn’t those bones be improving? My MO (medical oncologist) says bones aren’t like soft tissue. The cancer can be gone completely, but the bones will maintain their cancer altered appearance on a CT scan. We’ve had this discussion several times. You could say it’s been a bone of contention between us. You would say it if you liked puns. And I did.
The best news is that my liver is now fully clear of any visible cancer. It’s highly likely that there’s still some microscopic bits remaining that are smaller than the CT scan can see, but with any luck my immune system will go after those with the help of the immunotherapy drug I’ll be continuing indefinitely.
And now the “bad” news. My bladder still has cancer in it, though it has shrunk slightly from the previous scan, and greatly from the original scan in January. Here’s a side by side comparison of January vs June, but I’m not sure how well it will show up in the blog. You can click on the image to get a larger view.
The image on the right is from June, and prominently shows that damn stent, which I occasionally refer to as the Krazy Straw, or more recently, the Devil’s Straw. The stent is basically pointing to the bit of remaining cancer on the lower left portion of my bladder. Let me explain a CT scan briefly: It creates a series of images of what you would see if you sliced my body in half to get a cross sectional view. Each slice is about 1.5 mm apart, so if it weren't for CT scan technology you'd have to turn me into thinly sliced deli meat to get the same series of images, and I'd probably not survive that process.
Anyhow, the images above are just a single "slice". If you look at other images from the series, you'd see that the stent in fact goes right through the tumor like a banana through a bagel (wording inspired by the B-52s video for “Roam”). So, um, I suppose the urologist knew what he was doing when he put in a fresh stent. Maybe?
The image on the left is from January, and it may be difficult to see as there’s not much contrast between the tumor and the inside of the bladder, but there's a lighter grey area that is the tumor occupying approximately a third of the bladder. It looks absolutely huge compared to the image on the right. That image was taken when I went to the ER in extreme pain because my right kidney was swollen with urine that couldn't make it into the bladder, also known as hydronephrosis.
After looking at my latest scan, my MO and I discussed radiation for all of about five seconds. The conversation basically went like this:
MO: “Let’s zap it”
Me: “Okay”
This quick exchange is directly traceable to my previous blog post and the subsequent conversation with my wife. It seems that anxiety in this case served a purpose. I was obsessively thinking about radiation, but as part of that process was thinking about several possible results that could be shown in the scans.
One of those possible results would be a solitary remaining tumor in the bladder. In such a case, it would make sense to use radiation in the hopes of potentially eliminating all cancer that could be seen in a CT scan, and reaching NED status (No Evidence of Disease).
And as luck would have it, that very possibility turned out to be the actual result of the scan, and I had a pre-thought out decision ready to go. Emotionally, I went from being a victim of cancer to a warrior with a mission to eradicate cancer in a heartbeat. The moral of the story is that there is a happy medium between excessive worry and sticking one’s head in the sand when it comes to intrusive thoughts caused by scanxiety.
But this is supposed to be neuroendocrine cancer of the prostate, and we’re talking about the bladder. What about the prostate? The CT scan summary didn’t even mention the prostate. I asked my MO and he said there was nothing there. Interesting, and to the RO (Radiation Oncologist) I went.
The meeting with the RO provided further intrigue. He confirmed there was nothing to be seen in the prostate, and said that when speaking with the MO on the phone, the MO wasn’t absolutely sure if this cancer originated in the prostate or the bladder. I suppose it doesn’t really matter. Neuroendocrine cancer is pretty much the same wherever it starts in the body. Small cell lung cancer is a form of neuroendocrine cancer and my entire treatment has bee based on the latest and greatest small cell lung cancer treatments and I’ve been responding very well to treatment so far.
Getting back to the RO, he is not a doctor who instills false hope. He gave no guarantees of a cure, but said radiation to the bladder could buy me some time. He also made no promises about being able to remove the stent. Even if radiation gets rid of the tumor, scar tissue could be a problem. So in the context of such brutal honesty, when he said that I had a very good response to chemo, that really meant something.
He offered to throw some radiation at the prostate if I wanted it, but given my good urinary function and lack of any visible cancer in the prostate, we chose not to. Why mess up something that’s working okay now. Besides, not radiation the prostate also means less chance of collateral damage to the rectum (yikes!).
A couple days after the meeting with the RO I went back for a “simulation”, which is basically a couple of scans for planning purposes, and also involves tattooing reference marks onto the body. The sexier way to describe my day was “I drove my muscle car to Framingham to get a new tattoo.” While true, my generation of Mustang isn’t particularly muscular and this tattoo isn’t particularly artful or visible.
They are able to reuse some of the tattoos from my previous radiation, but since this treatment is occurring at the very bottom of the abdomen they needed some alignment spots lower down. Very very far down. If one of them were any lower it would be on my genitals. Let me put it this way: I wasn’t joking when I told the nurse that her job was made easier because chemo had also eliminated my pubic hair, though she thought it was funny. It’s a very sensitive area, and hurt like heck.
So back to that detour about masks and stents. As I said, that stent is going directly through the remaining tumor. Radiation is likely to cause all sorts of effects from swelling to formation of scar tissue that could close off the ureter if it weren’t for the stent. Wow, my highly experienced urologist was right to put in a new stent and I was wrong. Imagine that. Perhaps when it comes to stents and wearing masks we should put some trust in the professionals who have made it their life’s work to know about these things?
In the end, I expect to be stuck with a stent (where stuck has multiple meanings) for quite some time to come. I’m thinking likely for the remainder of 2020. But in the long term I am hoping to reach NED (though no doctor has promised anything like that), and someday we can try removing that stent and seeing what happens. For now, there’s too many complications that could happen with radiation without a stent. I’m even optimistic enough to think that any scar tissue would form around the stent and leave a hole for urine to flow through in the future when the stent is removed.
As a footnote to this post, careful readers may have noticed I refer to “my” MO and “the” RO. The RO is highly recommended by my MO and my urologist, but he does lack in people skills and I haven’t yet embraced him as my personal choice for radiation treatment, though he also treated me back in 2018. I do trust him because he has been recommended by other doctors who I’ve come to trust (usually because in the end they’re right and I’m wrong whenever there’s a disagreement about treatment).
Thank you for writing about your "journey". All the best to you as you pursue further treatment.
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