Friday, June 15, 2018

We encounter the world of health insurance

I’ve been blogging for some time -- starting back in April with this post -- about the efforts Memorial Sloan Kettering (MSK) has been making to devise a radiation-based course of treatment for the tumors I have that are resistant to chemotherapy. It hasn’t been a simple process, but it appeared to be coming to a very promising conclusion: I was scheduled to begin a course of 15 or 25 sessions of radiation beam therapy two days ago, on Wednesday, June 13. That, however, did not happen, because Empire Blue Cross Blue Shield (New York) refused to cover its cost. Empire’s stated basis for this denial was that this therapy is not medically necessary; in fact, it is urgently necessary and Empire’s denial is a direct threat to my health. (I don’t usually write in such blunt terms – but this has been a very difficult week and the situation calls for bluntness. I also haven’t written about insurance issues like this before, because MSK has dealt with every insurance hiccup we’ve experienced up till now, and prevented any interference with my treatment. But now I understand better how maddening insurance issues can be.)

The need for the radiation treatment can be seen in light of the history of my treatment for the cholangiocarcinoma I was diagnosed with in November 2015. Beginning a month after the diagnosis, I’ve been on one version of chemotherapy or another ever since. After all that chemotherapy the largest of my tumors has become inactive, possibly even dead. That's a big success for the chemotherapy. But meanwhile recent scans have found that in four areas my tumors are still growing. These tumors, as I understand it, are smaller than the large, inactive area -- but they are obviously dangerous, since they are growing despite chemotherapy. However, MSK is enthusiastic about treating these smaller tumors with radiation. Radiation is far from an experimental treatment for cancer in general, and has been used on abdominal tumors with great success. The radiation oncologist anticipates an 80-90 % chance that the treatment they plan to give me will kill my still-active tumors. If that happens, then -- with my largest tumor area inactive -- I would actually be healthier than I have been since I first was diagnosed with cholangiocarcinoma.

But time is of the essence. I am currently receiving no treatment. When the radiation starts, I will have an accompanying chemotherapy drug (capecitabine), meant to enhance the impact of the radiation, but because my active tumors are not responsive to chemotherapy alone, I have to have an alternative to chemotherapy or I have nothing. My radiation treatment, a planned series of daily  treatments over 5 weeks, was supposed to start on Wednesday, June 13, but my appointments for this week were all cancelled by MSK because of Empire's refusal to approve payment. Empire is, in other words, preventing me from getting treatment that MSK believes will help me, and meanwhile leaving me in a position where my tumors are going untreated. The potential consequences, obviously, are dire. MSK is continuing to fight this decision by Empire, and is in the process of filing a third appeal, this one to be heard externally by New York State rather than internally by Empire itself. A decision on this third appeal should come within 72 hours of filing. With luck that means that I will be able to start my treatment late next week – but even so my treatment will have been delayed by a week. If the decision on the appeal is against me, the delay will get even greater.

Empire’s stated ground for denying coverage was that the treatment MSK proposed was not medically necessary. But this was really a misstatement. What the radiation oncologist has told me is that Empire sees the function of radiation in liver cancer as the alleviation of symptoms in terminally ill patients. No doubt that once was true. It is no longer correct, however, and ignores the impressive body of research that has recently been produced demonstrating that radiation with modern high-dosage, careful-aim techniques can have curative effects on cholangiocarcinoma. Meanwhile, faced with evidence from MSK that in fact this proposed treatment was medically necessary for me, Empire refused to cover it because it did not fit with their policy on when such treatment is appropriate. What’s necessary should shape the policy – not the other way around.

The most striking published data on the efficacy of radiation treatment come out of M.D. Anderson in Texas (and MSK is employing equally sophisticated techniques). In an article called “Ablative Radiotherapy Doses Lead to a Substantial Prolongation of Survival in Patients With Inoperable Intrahepatic Cholangiocarcinoma: A Retrospective Dose Response Analysis,” 34 Journal of Clinical Oncology 219 (January 20, 2016), Randa Tao and thirteen co-authors report that large cholangiocarcinoma tumors in the liver – which in an earlier era were considered too difficult to treat with radiation – can in fact be treated in multiple sessions to produce cumulative radiation doses that are “ablative” (i.e., tumor-killing), “with long-term survival rates that compare favorably with resection” (219). (Resection is the surgical removal of parts of the liver containing tumors; it has till now been considered the only treatment of cholangiocarcinoma that can actually cure, rather than just control, the disease, but most patients – including me – are ineligible for resection because of the state of their illness.) And there are many other articles also finding evidence that radiation treatment can be valuable.

I hope I will have better news to report about this next week. It was very reassuring to talk with the radiation oncologist at MSK today and with his colleague who is preparing the appeal – they are clearly “on the case” and I now understand much better where things stand. (A lot of what happened in the course of the week was made worse by the lack of information along the way.) But for now we wait.

Sunday, June 3, 2018

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!)

Saturday, May 26, 2018

Spoke too soon

When I posted on Wednesday of this week I was looking forward to getting the infusion of Y-90 radioactive beads into my liver going in the near future, based on the positive findings the interventional radiologist had reported to Teresa from my mapping arteriogram on Monday. But he did say that if any new information emerged he would call us the next day, and I should have known better than to assume that that meant if we didn’t hear from him the next day (which was Tuesday) then all was definitely well. In fact he called on Wednesday and all was not well.

The last step of my adventures on Monday, after the mapping arteriogram itself (which focused, I believe, on where the tumors were in the liver and how to reach them), was a CT scan to check whether any of the tracer material used in the arteriogram had escaped from the liver and gone somewhere else. It turned out that exactly this had happened. Apparently 25 % of my liver blood vessels flow out to my lungs; even 20 % is high enough that they have to change the treatment protocol, and in most people only 10 % of the liver blood vessels do this. Having 25 % interconnecting this way meant that a lot of the Y-90 beads would flow on out of the liver and into my lungs, where they could cause quite impressive side effects. It would be possible to try the Y-90 beads anyway, provided the bead dosage was lowered, but then the likelihood that the treatment would be effective would be lowered too.

So I’m no longer going to be irradiated with the Y-90 beads. Fortunately there’s an alternative: traditional radiation in the form of beams. (“Beams not beads” is my new slogan.) We now have an appointment next week with a Sloan Kettering radiation oncologist, who evidently has already discussed my case with my regular oncologist and the interventional radiologist. The oncologist told us yesterday that M.D. Anderson, the excellent cancer hospital in Houston, had very encouraging data on the use of radiation beams, so this sounds like an attractive option. It may feature another “procedure” first, in which markers would be inserted into my liver to guide the aiming of the radiation beams; these preliminary procedures aren’t completely easy, as I’ve been learning, but still this plan sounds okay.

It actually has one additional advantage, which is that evidently radiation – unlike chemotherapy – can be deployed even when your liver is inflamed. That’s good, because mine is. We got that news yesterday (Friday) morning from the oncologist, and how we came to get the news from her is itself a story.

We were at Sloan Kettering on Friday for my regular appointment to have my pump emptied and refilled; this has to be done every two weeks even if what’s going into the pump isn’t chemotherapy, just to keep it from drying out and then potentially breaking down. We also had an appointment, set up some time back, to see the oncologist. Then, to my amazement, on Wednesday or Thursday that appointment was cancelled. I protested, saying that especially with the decision that I couldn’t have the Y-90 treatment this was a time when we particularly needed to talk with the oncologist.  Her office staff seemed to get that, and it looked like we might talk by phone on Thursday (instead of at the office on Friday) – but then I never heard from her by phone. So by the time we got to Sloan Kettering on Friday, Teresa and I were pretty upset.

Fortunately – sort of – I also hadn’t been feeling so well, and that, combined with the blood test results for my liver, got us a meeting with the oncologist after all. As often happens, once we got past the many difficulties of communication through her office, meeting with her was reassuring and informative. In fact she told us that she’d planned to come find us in the treatment suite where my pump was being reloaded, but we’d moved in and out of there so quickly that that hadn’t been possible. (The pump reloading had gone very smoothly; two weeks earlier the same procedure, at Sloan Kettering’s office in Basking Ridge, NJ, had produced enough bleeding to stain my undershirt and then my shirt on top of that, but this time the whole process barely interfered with our conversation. The photo included in this post is from this stage of our day. Photo credit to Teresa!) Anyway, the oncologist explained why the radiation beam approach sounded like the way to go, and it made sense to us both. She also ordered a liter of intravenous hydration back in the treatment suite, which probably helped me to feel better.

What’s the matter with my liver? As usual that’s hard to say, and on Friday afternoon I had another CT scan so they could get more information on what’s going on in there. But my own theory is that the answer is pretty straightforward: the mapping arteriogram on Monday was an intrusion on my liver, and my liver didn’t like it and reacted. I certainly didn’t feel so great immediately after the arteriogram, and that was easy to understand since the procedure did involve inserting a catheter through my femoral artery. That caused bruising, which seems to be healing fine, but I suspect that there was bruising in my liver too. Hopefully that will also be fine in a few days.

Meanwhile, on to the radiation oncologist and, we hope, to some form of irradiation soon. Who knew I’d come to a point in my life where I’d be so eager for irradiation?