Saturday, July 14, 2018

Radiation treatments complete!

At Memorial Sloan Kettering, when you complete a course of radiation treatment you're encouraged to ring a bell in the radiation oncology hallway to celebrate. So yesterday I finished my 15 days of radiation, and rang the bell. We have a video, but I haven't figured out yet how to post it here and get it to play, so in the meantime here are two still photos: the top one is of me and the bell (which by the way is nice and loud when you give that rope a good tug), and the bottom one is of a celebratory cupcake, shared with Teresa, the photographer, a little later yesterday afternoon. 

As for the treatment itself, it's superbly high-tech and as beams of radiation fly through you -- hopefully stopping to destroy your tumors -- you don't feel a thing. My main concern as the treatments took place was to stay as still as possible, while breathing just as instructed, none of which is as easy as it might sound. 

Your body does know that something is happening, however. I'm more tired than usual now, and this may continue for a couple of weeks. Meanwhile, the bottom of my right foot is a bit painful; this particular symptom may not be due to the radiation, though, but rather to the accompanying chemotherapy pills, Xeloda (also known as capecitabine), which softened the tumors up for the radiation. These and related symptoms aren't negligible, but they're certainly not very bad either -- especially not if what I get in return is the destruction of all my active tumors. We'll know if that's what's happened in a couple of months when I get my next scan.

Incidentally, the next scan isn't actually scheduled yet. The reason isn't a scheduling problem, but some kind of insurance issue -- again. I'm guessing that this one is the result, somehow, of my having switched insurers in the middle of the radiation treatment, and I'm assuming that it will be resolved soon and simply -- I hope that's right! 

One last note from the radiation process, and from the aging process: when I chose music that would play during my treatment, the young radiation staff person I discussed this with had never heard of Linda Ronstadt or Crosby, Stills, Nash & Young. I hadn't heard of some of the music she liked either, but that really only confirmed how dated my musical tastes have become. Fortunately she had a relative who liked Bob Seger, so we were able to find some common ground!

Monday, June 25, 2018

Getting irradiated

Insurance aside, radiation treatment deserves attention in its own right. Even after MRI’s, CT scans, and a PET scan, radiation still strikes me as the most science-fictional experience I’ve had as a cancer patient.

The basic problem with radiation is also its strength: radiation destroys cells. If it hits cancer cells intensely enough, it's likely to destroy them. If it hits healthy cells intensely enough, it's likely to destroy them too. (Incidentally, this doesn't have to be done just in one session; the doses add up, which is why my treatment will consist of 15 separate sessions lasting till mid-July.) So the job of radiation treatment is to find a way to concentrate as much as possible on the cancer cells while sparing the healthy cells nearby. In my case, that means sparing both the healthy parts of my liver (still chugging away with blood test numbers almost entirely back in the normal range). It also means sparing the important organs nearby, notably the stomach and the intestine.

There seem to be two basic ways of making sure the radiation hits just its true target, or rather does so as much as possible -- absolute perfection doesn’t seem to be attainable. The first method is by very carefully shaping the radiation beam; the second is by making sure the beam is as precisely aimed at the tumors it is meant to target as possible. 

As the patient, I don’t have anything to do with shaping the radiation beam. That’s a technological feat that the machinery is designed for, and the operators of the machinery carefully manage. 
The basic idea, as explained on a National Cancer Institute website, is to deliver beams of radiation from many directions, so as to “conform[] to the shape of the tumor” – hence the name “3-D conformal radiation.” Further refinement of the shaping of the beam can come from a version of 3-D conformal radiation called “intensity-modulated radiation therapy” or IMRT; again according to the National Cancer Institute website, “IMRT uses many more smaller beams than 3-D conformal and the strength of the beams in some areas can be changed to give higher doses to certain parts of the tumor.” Finally, in stereotactic body radiation therapy (SBRT), the same website explains that “many small beams of radiation are aimed at the tumor from different directions. Each beam has very little effect on the tissue it passes through, but a precisely targeted dose of radiation is delivered to the site where all the beams come together.” My understanding is that IMRT and SBRT are overlapping terms, and that they describe what I’m receiving.

All that, again, is the work of the machinery and the medical staff. Meanwhile my contribution is to assist with the aiming of all these beams. My assistance isn’t very dramatic: my assignment is to lie in a mold that was prepared at my “simulation” session three weeks ago and that holds me in a particular position, and then to follow instructions meant to get my position even more precisely set. I start my assignment by lying down on the narrow table where I’ll be during the radiation. Then the medical staff take over; at this preparatory stage I'm supposed to be a dead weight, and not try to help the staff, who will move me to exactly where they want me.

Then my job is to breathe. This is a lot harder than it sounds. Most of the radiation seems to be sent my way while I hold my breath; that’s because breathing itself moves the organs inside you quite a bit. But naturally people hold their breath to different degrees at different moments, and the radiation staff want me at exactly the right point. So I take a breath, then they tell me to let just a little breath out, then a little more, then breathe in just a bit … and then, when I’ve got just the right amount of breath in me, they start the actual radiation. Only by then I’ve already used up quite a bit of the oxygen from that first breath, and now I don’t get to breathe again till they’re done! Two or three times they took me right to my limit, with my chest beginning to shake as I needed more and more urgently to breathe. I wasn’t sure whether that would be an aiming problem itself, but they told me afterwards that I’d done a good job – so I hope they got the targeting they needed. I also hope I’ll be a better breather today (Monday, June 25), when I go for my second session.

But I haven’t yet said what really seems so futuristic about this process. I lie on the table, with a linear accelerator behind me that’s producing the radiation beams. (A linear accelerator!) Meanwhile three lenses, all quite large – maybe two or three square feet – revolve around me. I wasn't quite sure where they were coming from or going to, because I was in the body mold on the table and could only look up, but it appears that the group of lenses can revolve at least part way under the table on which I’m lying. The whole apparatus looks something like this picture (which happens to be of a Varian Medical Systems machine -- I'm not sure which brand Sloan Kettering is using):

One of these lenses, perhaps the biggest, is round (you can see it near the top of the photo). The round lens is the source of the radiation beams and has cross-hairs embedded in it that I think are used for targeting. There are also laser beams, apparently coming from the walls of the room, that help in the targeting too; I’m guessing these are aimed at the tattoos that I was given during the “simulation” session. 

The other two lenses are rectangular and are used for taking x-rays as the process goes along, to make sure that everything looks right inside me. (They're visible sticking out on the sides of the machine in the picture.) There was a moment during my first session, this past Friday, when everything paused, while the doctor reviewed the images they had so far, I guess to make sure that in fact everything did look right. Fortunately it did, and then my actual treatment started. In the future, I think the treatment will get underway at once, so the whole process will be quicker, maybe 20 minutes of actual time being treated per day. 

The lenses revolve very near me – the medical staff assured me that I would never actually be hit by one, and this proved to be true, but they’re still really close – and they do so quite silently. Meanwhile I’m listening to music; they told me I could choose anything and I had a good time with Beatles songs I hadn’t heard in years. So as I’m working on being a good breather these big lenses are quietly revolving around me, and it looks like something out of 2001.

And I say: great!

Saturday, June 23, 2018

Further adventures in the world of insurance

First, the good – the very good – news: the third administrative appeal by Memorial Sloan Kettering (MSK) against Empire Blue Cross Blue Shield’s refusal to cover my radiation treatment was successful. We learned this news yesterday afternoon (Friday, June 22) and a couple of hours later I had my first treatment. That went fine, but was certainly odd enough to deserve a blog post of its own, to come over the next few days.

Second, a few things we learned from our forced introduction to the world of health insurance:

# 1: Insurance companies don’t all have the same policies on the same treatments. What one company considers appropriate only for palliative care another will approve for treatment aimed at actually fighting the disease’s progress. I don’t know if there are any limits on what policies an insurance company can adopt, but I suspect they are allowed to follow any policy that can be reasonably justified in terms of current medical literature, and in the nature of things that must often mean they have a lot of leeway.

# 2: Lawyers, or other people with legal knowledge, can be a big help. Health insurance issues pose technical questions of both medicine and law. New York State, for example, has special legal provisions that appear to be meant to press decisionmakers in insurance coverage appeals to approve coverage for patients with rare diseases (these are contained in Article 49 of the Public Health Law). That’s the sort of thing that a lawyer specializing in health insurance denial of coverage would know and be able to work with – and yes, there are such lawyers, and we were fortunate enough to get advice from a very good one. Other professionals can also provide guidance, including patient advocates (we got referrals to three). Of course, lay people -- especially people who've had to deal with these issues, as cancer patients and caregivers do -- may know about these matters too, and we've gotten great advice from other members of the cholangiocarcinoma community. But one wouldn’t try to understand the medical issues of cancer treatment without a doctor’s advice, and I think it’s also risky to try to understand the legal issues without expert advice on them. That advice may be expensive, but so is paying for treatment that won't be covered by insurance or not getting needed treatment at all.

# 3 Lawyers will often tell you that it’s best to consult them early rather than late. That can mean the difference between preventing a mistake and trying to fix one that’s already been made. Just for example, MSK prevailed in its third administrative appeal, but it can matter what gets said in the first administrative appeal too. Moreover, even if you as a “consumer” have appeal rights separate from those of your physician as a “provider” – that’s the case in New York, and maybe in every state – what the provider says may affect what the consumer can later argue. Of course inserting a lawyer directly into such a process may be delicate in various ways, and I’m not claiming that’s always a good idea. Getting advice and understanding where you stand earlier rather than later, however, means you won’t feel as in the dark as we did. And I say that even though I’m a lawyer myself; this was an area I knew nothing about and certainly felt lost in.

# 4 All that said, it makes a huge difference if you have your provider on your side, and if your provider is skilled at handling these issues. We had a very skilled and determined provider on our side.

# 5 It’s especially important to have the provider on your side – and to have advice of your own from a lawyer or other expert on the rules -- because the whole process is far from patient-friendly. Empire Blue Cross Blue Shield initially denied coverage for my treatment, and then in identical terms rejected the first appeal of this denial, on grounds that, as stated in their letters to me, were just about completely unilluminating. The crucial sentence said that the particular type of treatment MSK was seeking coverage for “is not covered,” and gave no reason at all for that finding. I still don’t know what we would have had to do, or been able to do, to find out what Empire’s reasoning was, and without knowing what they were thinking there’d have been no way for us to challenge it (even assuming we could figure out how to do that if we did know their rationale). I do know now that each insurer’s policies on what it will cover are available on the web; these documents aren’t easy to read but they’re worth looking at, and for what it’s worth it’s far from clear to me why Empire maintained that under its policy this treatment wasn’t covered.

Later on, when MSK filed its third appeal, this went to a state agency for decision, and the agency in turn assigned the matter to a company that evidently does appeal-deciding as its business. This company received the matter on June 19, and its decision was due no later than June 22 (which is in fact when it decided the matter and, happily, in our favor). On June 19 the company wrote to me to offer me a chance to submit any documentation I would like included in the review. It said I must fax or overnight mail this material within 24 hours of receiving the letter. But the company's letter actually went out on June 20 by Priority Mail, and so it didn’t arrive until June 22; we didn’t see it until we got home from the radiation treatment I received that day! According to the letter’s terms, I was supposed to have until June 23, a Saturday, to send in documentation – which would have arrived after the decision had been made and issued. This is not a procedure meant to facilitate patient participation.


So the net result: Empire’s refusal to approve my treatment wound up delaying the start of treatment by 9 days, from June 13 to June 22. It’s not clear to me what Empire gained by it. Were they just mechanically applying their policies, or is this part of an institutional strategy of resisting claims so as to avoid payment to all but those few patients whose cases get taken through the appeal system as mine was? Whatever Empire gained, the delay was extremely stressful for us, and trying to deal with it took a great deal of time. Hopefully stress and time are all that this experience cost us. The radiation oncologist at MSK advised me early in this delay period that it was worth waiting, and didn’t think that doing so was likely to compromise my medical condition. Fortunately, my tumors apparently are “indolent”; may they always remain so lazy, or even better be destroyed by the treatment that is now finally underway.

And one last reason that we are grateful to MSK: on June 30 I will go on long-term disability at New York Law School. That day my insurance will shift from Empire, New York Law School’s insurer, to a plan at Aetna that is available to my wife through her employer, Rutgers University. Could Aetna proceed to raise its own objections to the treatment that I’m now receiving? The impression we have so far is that Aetna isn’t likely to do that. But if they do, we’ve been specifically told by MSK that my treatment will not be interrupted or cut short; they will complete the full course of treatment and, if necessary, work through any difficulties with Aetna separately.

We had been assured years ago by someone in MSK’s business office that the institution stood behind its judgments of medical necessity and would treat me according to those judgments even if insurance coverage was denied. It doesn’t seem they will go that far, since they weren’t prepared to start my treatment without getting insurance coverage confirmed in advance. But they will go quite a bit of the way, since now that the treatment has started they will finish it even if they encounter new insurance difficulties. These treatments aren’t cheap, and so that’s a significant commitment on their part. I still wish that MSK had kept us better informed as this process worked its way along over the past two weeks, but overall Teresa and I are grateful for – and impressed by – what MSK has been willing and able to do for us, not just medically but financially and legally as well.

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.