Passing My Tests

On September 7, I had two more scans, meant to determine definitively what the effect of my summer’s radiation treatment had been. I’d had one earlier post-radiation CT scan on August 21, but that was meant to make sure that the various side effects I was feeling were in fact side effects rather than something else. These two were focused on whether the radiation had been successful against my tumors – the critical question.

Why two? Because the two scans had overlapping functions. The CT scan looks for actual physical masses, such as tumors. But even if you find a mass you don’t necessarily know what kind of object you’re looking at. The other scan, the PET scan, doesn’t look for physical masses but for activity: if the scan picks up signals of “avidity” – essentially, high consumption of energy, which is characteristic of cancer – that’s a bad sign. What you especially don’t want is for the scans to coincide, as they do if the CT scan finds suspicious physical spots and the PET scan finds those spots fit with cancerous energy consumption.

My scans have now been read by three MSK physicians (and by Teresa and me). They’re pretty technical documents, so we needed the doctors’ translations. But in another way they’re also pretty simple: that is, if the scans are good the doctors are pleased, and if the doctors are pleased then we’re pleased.  All three doctors were pleased; in fact, I think it’s fair to say they were all very pleased. And so we are too!

What the scans showed was first, that all the tumors MSK was attacking with the radiation were now smaller. They hadn’t disappeared, but they were smaller. Second, the signs of extra hunger in the locations of those tumors had also largely disappeared; energy consumption in those areas was now roughly the same as in the normal, unaffected parts of my liver. And, third, the only instances of either physical locations or energy consumption that were at all out of line did not coincide with each other, and so the doctors weren’t worried by these.

In short, the doctors just weren’t worried. The radiation, delivered by the latest techniques so as to give my tumors a high and lethal dose, appears to have done just that. So what do I do now? The answer is: nothing. My next scans are in two or three months; between now and then I won’t receive any treatment for cancer itself, and if the next scans are similar, that will continue.

I should add that though I have no cancer treatment scheduled now, I will continue to have treatment for side effects, such as stomach problems and intense fatigue, and for the side effects of the side effects medicine. Sigh. It was because of possibilities like these that I had yet another scan on September 18. As readers of this blog will recall, one night some weeks ago I had trouble staying upright as I went for a walk, and I’ve also felt from time to time that I’m losing track of my own arguments in conversation. 

With those in mind I had a brain scan. This is an interesting experience in its own right; as the patient, your head goes into a helmet/camera lens which looks a bit like the helmets worn by the evil Empire soldiers in the Star Wars movies, and then you spend 30 minutes being motionless while they scan your brain. The idea of anything out of place in your brain is scary, of course, but the radiation oncologist told us in advance that these scans are usually given to rule out possibilities rather than because the doctors expect to find trouble, and happily that turned out to be the case for me: there’s nothing going on inside my brain except the usual, flawed as that may sometimes be!  I think the moments when I don't seem to be functioning as acutely as I want to are expressions of the fatigue that the radiation has caused me.

Finally, as to my prognosis, I specifically did not ask the doctors to give it a number, and they didn’t, but what the radiation oncologist said is that my prognosis depends on what if anything emerges next; what I already had has been so thoroughly attacked, it appears, that it is no longer a factor. This isn’t quite “NED” – No Evidence of Disease, the modern phrase that doctors use instead of “in remission.” But it does appear to be the next best thing, which I’ll make up: “NEAD” – No Evidence of Active Disease. We certainly didn’t count on achieving this state of affairs back in November 2015 when I was first diagnosed with this insidious, but as we’ve learned not all-powerful, cancer. I’m very grateful to MSK and to Teresa, and others, for all the help they gave me in getting to this point.

Beams not beads

The first step in my revised treatment plan -- the "beams not beads" plan -- is scheduled for tomorrow, Monday, June 4. It’s called a “simulation” session, but it’s not really just a simulation of the radiation beams to come. Instead, during this session they will create a mold of my torso, or rather of my back, and then I will lie in this mold for all my future radiation appointments. The essential thing, it appears, is to make sure that the radiation beam is as accurately aimed as possible, and so they need to make sure that I’m actually lying on the table in exactly the same position each time. They will also tattoo my torso, again to mark the correct targets, and these tattoos evidently are the real thing – they’ll never go away. (Perhaps after the treatment is complete, I can get someone to tattoo “Momma” in a way that incorporates the medical markings.)

And then we’ll start, I think probably in the week of June 11. I’ll either have 15 treatments or 25, depending on how big a dose they want to administer each time. As I understand the schedule, those 15 or 25 treatments will take place every week day until the full dose has been administered. I’ll go into Sloan Kettering each day, get a 20-minute dose of radiation, and go home – or, for that matter, go out to dinner. They expect I’ll have few side-effects, though perhaps a few weeks in I’ll have enough fatigue that I won’t be dining out.

It’s interesting that I don’t get treatments on Saturday or Sunday – as far as I know – since it seems unlikely that my tumors or my liver are aware of the difference between weekdays and weekends. But there may be some medical benefit to pauses every few days, and I suppose weekends are the natural time for pausing.

The radiation oncologist, with whom we met on Wednesday, May 30, was very clear and quite encouraging. What I am going to have is called SBRT, or stereotactic body radiation therapy: very precisely aimed and quite high-dose radiation treatment. It utilizes photon radiation, which evidently for me will consist of X-rays. An alternative might have been proton radiation, and we asked about this, but the radiation oncologist told us that there was no evidence that the greater precision of proton radiation actually makes a difference in most patients, and he didn't think it would add anything for me. 

The radiation oncologist believes that he can reach all of my active tumors with the radiation. (That’s better than what we were anticipating with the radiation beads, because apparently my blood system didn’t offer good access for the beads to reach at least one tumor area.) He also plans to continue the treatment until it reaches ablation dosage; “ablation” in this context appears to be a synonym for destruction, and this is the first time that we’ve been told that they could achieve that. He said the chance of tumor death was 80 - 90 percent! If they can actually destroy all my active tumors, that would be great – even if, as is conceivable, at some future time these or other tumors may appear again.

All this makes us wonder a bit about why I was never put into radiation treatment before. Some part of the answer may be that I started in chemotherapy, which is the standard treatment for people whose tumors can’t be surgically removed, and basically Sloan Kettering’s strategy was to keep me in chemotherapy as long as it produced results – and then to try something else. It makes sense to get the most out of any one treatment approach before trying another, as long as it doesn’t for one reason or another get to be too late to switch by the time switching is needed, and fortunately I’m able to make this switch.

But another part of the answer may have to do with the particular course my cancer has taken. Apparently the largest tumor masses showed up on my recent PET scan as inactive. Our oncologist, I think, suspected this was the case even before the PET scan, but that scan certainly added evidence to support this assessment. Inactive might mean “dead,” which would be great, or it might mean just “inert,” which would be good as long as we can keep them this way. It's possible these tumor areas were originally too large to treat with radiation, but they are also close to various healthy parts of my body that could be harmed by radiation inadvertently hitting them; now, happily, it seems there's little or no need to try to treat these areas. So radiation now makes sense in a way it didn’t before, because the parts of my cancer that it might be risky to target with radiation aren’t active, and the parts that are active can be attacked with radiation without significant risk to anything else.

So the next step is the “simulation” session, and then, soon after, the real thing begins.

******

And in other news – at New York Law School’s graduation ceremony yesterday, June 1, I received the school’s President’s Medal, for what the award citation called my “innumerable, deep, and lasting contributions to the Law School” and for my “lifelong work to advance social justice and uphold the constitutional principles our community holds dear.” I also got 5 minutes – apparently I actually took 7 – to speak to the graduates. I felt moved and very honored and grateful. And here’s a picture Teresa took of me during my 7 minutes at the podium: 

(The picture doesn't show the event's principal speaker, US Supreme Court Justice Stephen Breyer, who got 15 minutes and used them really well!)

An odd test and its interesting results

This past Wednesday I had my first PET scan. I’m going to describe the experience of the PET scan in a moment, but first, in an effort to understand the science behind the experience a little better, I’ve looked up some terms, and here’s what I’ve learned:  

“PET” stands for positron emission tomography.

“Positrons,” in case you didn’t know (I didn’t have this clear), are subatomic particles with the same mass and magnitude of charge as electrons, and they are the “antiparticle” of the electron. According to the online Encylopaedia Britannica, my source for all this, they “quickly react with the electrons of ordinary matter by annihilation to produce gamma radiation.” That process evidently is less dramatic than it sounds, however, since I didn’t feel any explosions during the test. Man-made radioactive sources – such as the radioactive glucose that was injected into me – produce positron emissions, and these can be measured in the PET scan. (Incidentally, I received a card explaining why I might show up for a couple of days after the scan as radioactive on Homeland Security sensors – but I guess I didn’t pass through the zone of any machine tuned to quite this level of sensitivity.)

“Tomography,” meanwhile, is defined by Merriam-Webster as “a method of producing a three-dimensional image of the internal structures of a solid object (such as the human body or the earth) by the observation and recording of the differences in the effects on the passage of waves of energy impinging on those structures.” I have to admit I’m not sure which “waves of energy” are involved here; what I understand better is that the radioactive glucose, as the Mayo Clinic explains, “collects in areas of your body that have higher levels of chemical activity, which often correspond to areas of disease. On a PET scan, these areas show up as bright spots.” Cancer shows up because cancer cells “have a higher metabolic rate than do normal cells.”

So the PET scan catches the telltale signs of cancer’s metabolic activity. It doesn’t directly measure the physical dimensions of the tumors; for that, apparently, other scans are more effective. But it does tell you how active your tumors are.

Now, the actual experience of the scan: As readers of this blog know, the MRI is an extremely noisy test – full of loud clanking noises which somehow reflect the ongoing use of the magnet that drives the “magnetic resonance imaging.” The CT (computerized tomography) scan is simpler, but even the CT scan often features breathing instructions (“hold your breath”) as the machine’s operator seeks a clear and precise image.

The PET scan has none of this. Although you lie on a narrow table and the table slides you into a donut-ring machine, all of which resembles the MRI or CT process, once you get into the machine – you’re not all the way in, apparently, but I did feel pretty enclosed – nothing happens. No clanking. No breathing instructions. Not even much movement of that table to get a focus on one part of the body or another. And nothing in particular for the patient to do; the operator encouraged me to sleep, and I think I did. About a half hour later, you’re done. Someone said it was really like magic, and I agree – something is being done that you have no perception of at all, and yet it is really happening.

What were the results so magically obtained? We learned these from the interventional radiologist an hour or two after the test was over. He confirmed that I have some areas of tumor activity – I think he found three different areas in different parts of my liver. But he also said that my other tumors, which I think include the largest tumor as well as various smaller ones, are inactive. They’re so inactive that they may be dead – which would be great – but even if they’re not dead they seem to have become inert. I’d rather they weren’t there taking up space, but my liver doesn’t seem to mind them (my liver bloodwork numbers continue to be good), and if most of my tumors have become inert, then it seems as if these years of chemotherapy have had a more profound effect than I’d realized. I thought all the tumors were still in action, just held in check by regular treatment, but it seems that most of them may have moved out of the fight.

The task ahead is to attack the ones that are still showing up as bright spots on the PET scan. We thought that the next step, the step we would discuss with the interventional radiologist, was to attack three or four particular tumors, most or all in one place, but the radiologist wants to do much more than that: he wants to attack all of the tumors that are still bright spots. That means sending Y-90 radioactive beads to multiple parts of my liver, and may mean two separate infusions of the beads.

Needless to say, it would be great to find that all of my remaining active tumors were degraded by this treatment. That may not happen, of course, but the chances of the treatment succeeding in damaging the tumors are good. That’s primarily as measured by the treatment of 15,000 -- or was it 50,000? Teresa and I heard different numbers -- colon cancer patients. (I think this is a newer technique for cholangiocarcinoma, my illness, and as always cholangiocarcinoma is such a rare cancer that the numbers of patients aren’t large.) Assuming we do hit the tumors successfully, the radiologist also expects lasting benefit as a result, rather than, say, the quick arrival of new tumors to replace the old ones.

All this is now moving pretty fast. I’m scheduled for a detailed mapping of my tumors the week after next, and for actual treatment with the Y-90 beads in early June. I’ll report on those experiences as they arrive!