The Arrow #283

Greetings everyone.

Before we get into the nitty gritty of cancer surveillance and medicine today, I want to start with something inspirational. At least it was inspirational to me.

A few days ago, the photos below appeared at the top of The Wall Street Journal. There was no follow-up article later in he paper. Just this set of photos with minimal commentary. All I have to say is that Betty Bromage of Cheltenham, England is my hero. Let’s hope we can all be doing this at age 97. God bless her.

Cancer Surveillance

I’m using this issue of The Arrow to give everyone an update on my health status. And to discourse on a terrific surveillance test for cancer along with the medical aggravations of my recent — two days ago — renal stent placement.

First, I just got back another Signatera report showing I have a 0.00 tumor burden. These tests are done with a monthly blood draw, and I’ve had no tumor burden for seven months now.

Before moving on to part 2 of my health saga, I want to take a bit to explain this test.

When my consulting oncologist recommended it to me, I had never heard of it. As it turned out, neither had a lot of other doctors. Including one I just talked to recently. He told me that these kinds of tests are no substitute for going in and taking a look. And that they just aren’t all that accurate.

I want to delve into this in detail, because since revealing that I had developed bladder cancer, I’ve received many, many comments from others who have cancer, or who have a loved one or good friend with cancer. Even someone in my own family. Virtually none of these folks had any idea this test is available. Nor did their doctors. Or if they were aware, they didn’t order it.

The company that came up with the test is Natera, located in Austin, Texas. Here is a link to a recent Wall Street Journal article on the company. Just so you’ll know, I have no financial interest in this company whatsoever. I didn’t invest in its startup. I didn’t even know it existed until my oncologist told me about it. I don’t own a single share of its stock. I’m not informing you about this company for any other reason than that I think it is a great way to keep tabs on cancer without having to go through PET scan after PET scan. Or without having any kind of invasive procedure to “just take a look to make sure everything is okay.”

The particular test I get every month is, as I said, called Signatera. I don’t even have to go anywhere to get my blood drawn. The company sends a phlebotomist to our house. I get a kit by FedEx every month, the phlebotomist comes by, I give a blood sample, he/she puts in the kit I’ve received, and sends it off to Natera. I (and all my doctors) get the results in a week or so.

Here is how it all works.

To begin with, you’ll need a sample of your tumor. If you’ve had a cancer removed completely or partially (i.e., a biopsy) your pathologist will have a sample. Once you’re signed up with Natera, the company gets the samples from your pathologist. (This is another thing I didn’t know. By law, pathologists have to keep these samples for years.) Then Natera sends the samples to another company for sequencing of the tumor’s DNA.

The sequencing identifies every mutation in the tumor from the sample. It then sends a report to the oncologist and the sequence to Natera. My report was about 20 pages long, describing every mutation in my tumor. My oncologist was delighted that I had so many mutations. She said that would make my test results extremely accurate and durable.

(On an aside here, just to be clear, this test isn’t designed to tell you if you have cancer. It was developed to test the amount of your specific tumor that you already know you have. You have to have had a biopsy and a large enough sample of your own tumor for it to be able to tell you anything.)

Tumors are filled with mutations, which is why the pharmaceutical industry has had so much difficulty coming up with any kind of anti-cancer drug that works reliably. They have had a few successes, but not many.

If a particular type of cancer just had a single mutation, or even a couple, it would be a much more simple prospect to find a drug that would blast just the cells with that mutation. But most cancers have many, many mutations, so it’s virtually impossible to find a drug that hits them all.

Since my specimen had many, many mutations, my oncologist said the test would be even more accurate than usual. (It’s an extremely accurate test at its worst. The analogy I’ve heard is that if the test were looking at grass instead of tumors, it could find one blade of diseased grass out of an entire football field of grass.) So even if my cancer developed a bunch of new mutations, I had so many going in that the test would still be able to pick up some of the other mutations and provide what it calls a tumor burden number.

The doctor who I talked to about this tried to bluff his way through by telling me the test just simply couldn’t be that accurate. Which told me he hadn’t looked very deeply into it and/or didn’t know Jack shit.

Here is an absolute truth. If a tumor exists, it has a blood flow. If it doesn’t have a blood flow to bring it energy, it’s dead. If it does have a blood flow, it shucks off dead and/or dying cells into the blood all the time. All of our organs do this. Just because a tumor loses dead cells doesn’t mean it isn’t growing. It could be growing 20 or a 100 times faster than it’s losing dead cells.

The Signatera test picks up these dead cells in the blood draw. It looks for any cells matching the sequenced DNA from the cancer biopsy. If it finds any matching cells, the test then compares them with the blood volume drawn, and generates a tumor burden number, which is a relative number. But if it is 0.00 as mine has been over the past seven months, then you can be pretty sure that you are tumor free.

Strangely, just while I was writing the words in the above paragraph, I got the following test message from Natera. As soon as you get your latest result, they begin by sending you a test kit and scheduling the next blood draw.

I can’t imagine going through chemo therapy or immunotherapy or radiation or all of them without some way of knowing whether what I was enduring was working or not. Until these tests, one had to get PET scans every few months. To get a PET scan, you have to spend half a day dealing with it. You arrive wherever the scans are done. You get an IV of glucose with a radioactive tracer attached to it. You sit there for 30-45 minutes while the radioactive glucose circulates around and gets gobbled up by any cancers (which love glucose). Then you go under the scanner for anywhere from 30-45 minutes. Then it takes a day or two before the radiologist reads it.

It takes maybe ten minutes for the Natera phlebotomist to come to the house and draw my blood.

I wish with all my heart I had known about (or my first urologist had known about) this test. I wonder what it would have shown based on my first pathology samples? I followed my regimen of repurposed drugs for about eight months before I got my first Signatera test, which showed a tumor burden of 3.00. On the advice of my oncologist, and because I’d been having a few unpleasant side effects from the full bore repurposed regimen, I quit taking the repurposed drugs and my Signatera went up from 3 to 10 to 40 to 90 month over month. I wrote all about this in a previous post. I just wish I had known back when my cancer was originally diagnosed what my tumor burden was. I can only guess, but from the path report, I would guess it would have been in the thousands.

Here is the link to the Natera website. From there you can find out about pretty much anything you would like to know about the Signatera test. The company has different sections of its website for different types of cancer.

Once again, I have zero financial interest in the company.

As to cost, I have no idea. Unfortunately, I’m at an age at which I have to have Medicare. I do also have a Medicare Supplement. I’ve been taking this test monthly for a little over a year, and I’ve yet to see a bill. When I first looked at the material on the test, it gave a number of financial options for those who have no insurance or crappy insurance. Apparently, they have all kinds of ways to help financially. I’m sure you can find out on the website.

After writing the above paragraph, I realized that I do have info on what the Signatera test costs or at least what they bill insurance for it. It ain’t cheap. As I wrote above, I’m on Medicare with a supplement. The deal doctors are forced to take with Medicare is that if they do accept it, they can’t bill the patient for any amount above what Medicare pays. (It’s more complicated than that, but not for this discussion.)

I had MD go back and look at my Medicare explanation of benefits correspondence to see if there were prices for the Signatera test. Indeed there were.

The original tumor sequencing was performed by a company called Tempus. It cost an initial $2,500 plus another charge for $3,800 a week or so later. The monthly Signatera tests billed anywhere from $7,900 (at the highest) to $3,800 at the lowest. Medicare paid substantially less.

As I wrote above, Natera has all kinds of programs to help with the costs.

This Is Mike’s Bladder

After waiting forever with my right kidney getting worse by the day, I finally got a stent put in Tuesday morning. I won’t go through all the hassles I went through to get the appointment to do it, which are just another example of the shittification of everything.

Here is what a stent looks like.

I’ve placed a red arrow where my blockage is. Right at the spot where the ureter enters the bladder.

Stents can be put in from the bladder side by going through the urethra or they can be put in by going through the flank (back) in a process called a percutaneous nephrostomy tube (aka stent) placement.

Although I had cancer all over the dome of my bladder, it was greatest around the right ureteral os, the opening where the ureter comes into the bladder from the right kidney. My preoperative blood work for my first surgery showed a markedly elevated creatinine of 3.55 (a blood measure of kidney function). The upper level of normal is about 1.0 depending upon the lab. Also, a scan showed my right kidney to be enlarged. The doc who did my first surgery tried to insert a stent from the bladder side going up the ureter, but he couldn’t find the opening due to its being edematous and covered with cancer and, thus, blocking the normal outflow and backing up the urine and causing enlargement of my right kidney. Since he couldn’t get the stent it, I had to have it placed percutaneously through my back. Which called for the services of an interventional radiologist.

I had stents placed on both sides, because the doc couldn’t find the os on that side either and I suppose he figured the left one would be covered with cancer in due course.

Once the stents were in place, my creatinine returned to normal within hours.

As my cancer got smaller and smaller on the repurposed drugs and with the serial TURBT resections, I began to militate to have the stents removed. Every time I did any kind of strenuous workout or even played golf, I would pee blood for a day. Despite my urologist telling me it was no big deal, I didn’t like it. And I constantly worried, despite his reassurances to the contrary, that I was going to rip one of the stents out.

My cancer kept getting smaller and smaller. On my second look-see, he took the left stent out, but replaced the corroded right one and left it in. On my third visit, he told me the cancer was almost gone – that was about two weeks after I had my first Signatera test showing a 3.0 tumor burden. But, much to my chagrin, he left a right stent in. He didn’t want me to have some kind of issue on the three hour drive back to Dallas and have to pull over in some rinky dink town with even a rinkier dinkier emergency room with a urinary retention emergency.

So he gave MD instructions on how to remove the stent. Which gave me king-sized apprehension. It was one thing to have it removed surgically while I was asleep. It was entirely another to think of having it pulled out through my you-know-what while I was wide awake. I shouldn’t have worried. MD was able to remove it like a pro. And I didn’t really feel much of anything. But major, major relief that I wasn’t permanently disabled.

This time around my creatinine went up again, but only to 1.7. Still that’s high and a sign that something is going on. So it was off to a set of different types of scans to gauge kidney function and to see where the blockage is.

It was again right at the point where my right ureter enters the bladder. And my right kidney was only pulling about 28 percent of the filtering load, while my left was shouldering 72 percent of the burden. I ran into my urologist from Louisiana at a function in Santa Cruz a week or so after having the scan. He told me that 28 percent function of a kidney was getting concerning. He said when the function gets down near 20 percent, the kidney may not be able to recover. But on a brighter note, he reminded me that I could easily live with one kidney. (Small consolation, I told him – I’d just as soon keep both, thank you.)

When I got back from the meeting, I started pushing on everyone involved to get me stented and get the blockage fixed. If I were in Little Rock or Boulder, Colorado where I had had an active practice, I could have gotten it dealt with in a couple of days.

But I’m not part of the official medical community in Santa Barbara, so I don’t get any special favors. (I do have a few doctor friends who can sometimes help, which I deeply appreciate.)

So now I know why everyone feels the way they do about the medical profession; it’s frustrating to the max.

I was bitching about it to my oncologist here in town, who is a really great guy. He had sent me to a local urologist earlier to discuss the kidney issue, the one who scheduled me for all the scans. I was telling my oncologist that the urologist had obviously seen my scans and my creatinine numbers. He had ordered the tests himself. I knew what they were, that they were a bit worrisome, but I had gotten no call from him or his office to give me any kind of plan. My oncologist said he would call the urologist and tell him that if he was too busy to deal with it that he (my oncologist) could refer me to another urologist in town.

It got his attention, if only momentarily.

On the way home from the oncologist's office, the urologist calls me and tells me not to worry and that he will “organize” getting placement of a stent for me to unload the strain off the kidney while we waited for me to get into his office to see him. This was last Tuesday, a week ago yesterday. I was expecting a call from his office that afternoon. Silly me.

By late Wednesday (the next day), I still hadn’t heard a word, so I called the urologist’s office. I, of course, had to go through the “all of our receptionists are dealing with other patients right now, so please hold and your call will be answered in the order in which it was received” bit. I waited and finally a person answered. I told her I had talked to the doc (her boss; it’s a single urologist’s office) yesterday, and he told me he was going to arrange something for my ailing kidney.

She tells me, “His nurse just brought us the order this afternoon, we’ll call the hospital and try to arrange something tomorrow. (This is 27 hours after the urologist himself called me telling me he was going to expedite matters.) I tell her, “Look, my kidney is failing, and I need to get this seen about ASAP.” She says “We’ve got patients here all day, and it can take us 40 minutes to call your insurance and get approval on something like this. We’ll call first thing in the morning and get it set up.”

The next day, in the middle of the afternoon, I get a call from a nurse at the hospital telling me she had just gotten an order to set me up for a stent replacement. Yeesh. I told her I didn’t need a stent replacement; I didn’t have a stent. I needed a stent inserted. That threw her for a loop. She stuttered around and said, “Well, that’s not what the order says. I’ll have to call the doctor’s office to clarify it and get back to you.”

And, good as her word, she did. The next day in the afternoon. She told me they were so, so busy and that the soonest she could get me in was the following Tuesday. I told her my situation — every day that goes by my kidney is being squished — and she said, I guess you could just come in through the emergency room. Maybe that would be a little faster.

I said screw it. Just give me the appointment on Tuesday morning, and I’ll be there.

I was there at 7:45 am as instructed. I waited until 10:15 am before being taken in for the procedure.

It was a percutaneous stent placement. The interventional radiologist went in through my back and under x-ray guidance ran a wire through my kidney down the ureter to the bladder while I was under mild sedation. Once in place they thread the hollow stent tube over the wire and then pull out the wire. The sedation could have been a lot less mild, and I would have been happier with it, because the procedure was not painless. But it was bearable.

The radiologist who was to do the procedure came in to talk to me beforehand. When he introduced himself, he called me Dr. Eades, so somewhere along the way he got word I was an MD. After telling me preoperatively all the reasons he might not be able to get the stent in – it’s called hanging crepe, in the biz – it went in without a hitch. Thanks be to the saints above!

But what is weird, to me, at least, is that I never saw the guy again. I figured he would come in and tell me about the procedure and what he had done. Before the procedure, while he was hanging crepe, he told me that based on the images he had seen, the blockage looked pretty severe. And that be might not be able to get a wire through it and into the bladder. He told me if that were the case, he would have to put a tube into my right kidney to drain the urine out into a bag I would have to wear until a definitive surgical procedure could be done.

I knew all this and was mightily worried about it.

I assumed he would come in and tell me, or at least tell MD if I were still “mildly sedated” what the deal was. But nada. I was curious to learn how difficult it was to get the stent in and get some measure of the severity of the blockage. Did he have to force the stent in, or did it just slide in easily?

But he was a no show.

So, I went to MyChart later in the day to see if he a posted a post surgical note, which is always done. Here is mine.

It told me nothing about the amount or type of blockage.

Since the very start of all this when I was first diagnosed, I’ve learned first hand in spades why everyone I know complains about the medical system today.

Now I have a stent going from my right kidney to my bladder. I’ve got an appointment with the urologist next Tuesday to see where we go from here.

I’ve got to thank all the readers who have sent me good thoughts through all this. It’s been a pain in the rear, but it’s a lot better than having cancer.

Newsletter Recommendations

Time for the poll, so you can grade my performance this week.

That’s about it for this week. Keep in good cheer, and I’ll be back next Thursdaysoon.

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This newsletter is for informational and educational purposes only. It is not, nor is it intended to be, a substitute for professional medical advice, diagnosis, or treatment and should never be relied upon for specific medical advice.

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