But even after the pathologists have differentiated a Hodgkin’s mass from other kinds of lymphoma, there are several sub-types of Hodgkin’s Disease. Curiously, there was a time when the sub-types were viewed as different diseases and treated as such. Currently the thinking is that there are 5 distinct sub-types, three of which are quite rare, and all of which can be treated basically the same way. When my tumor was analyzed and a decision was reached on the sub-type, it was called “mixed cellularity.”
When I saw the lymphoma team at the NIH, they examined me and went over my records, and also submitted leftover tissue from my biopsy to their pathology lab. Since the NIH uses biopsied tissues for research, and it is critically important that they assign the right tissues and patients to the right studies, they have a pretty good lab. In fact, the NIH doctors claimed that the world’s premier Hodgkin’s pathologist works in the lab (although that doesn’t mean he worked on my tissue). On Thursday, I got a call from a doctor at the NIH who said that the lab results came back as “Nodular Sclerosis” sub-type, e.g. not mixed cellularity.
This is a good news/bad news situation. On its face, it is good news. Nodular Sclerosis is the “classical” presentation of Hodgkin’s. Survival rates are higher, and recurrence rates are lower for patients with Nodular Sclerosing Hodgkin’s. Mixed ceullularity is considered a negative prognostic indicator. When a patient under 40 has a large tumor in the chest, it is nearly always Nodular Sclerosis-subtype. Since I am under 40, and I had a large tumor and it came up as mixed cellularity, it was perceived by my doctors as a very strange, aggressive form of the disease. So the bad news is… the lab was wrong, and my doctors were operating under a false assumption, for reasons that were never explained to me.
I reacted to this with in the stoic, tactful manner you have all come to expect from me: at my latest doctor’s visit I asked “how the f*** is it possible that they got this wrong?”
Apparently, oncologists are not used to hearing the f-word. The answer, it turns out, is pretty simple. Only about 1% of a Hodgkin’s tumor is made up of abnormal cells. This is one of the reasons that the disease baffled everyone for so long. It seemed like people were dying of a condition where their normal immune (lymphatic) tissues kind of bunched up into clumps and stopped working. The implication of this fact is that if you take a Hodgkin’s tumor, and slice off a chunk of it and put it under a microscope, it will inevitably contain a bunch of different kinds of cells, including a very large number of healthy cells. Therefore, it is easy to mistake other sub-types for mixed cellularity. Such errors are not necessarily indicative of incompetence. What probably happened is that by sheer coincidence, the section of tumor used to determine the histology (cell-type) initially did not happen to contain sclerotic cells. When the NIH did their analysis, they either used a more tissue, or got “lucky” and saw a bunch of sclerotic tissue.
My follow-up question, “is this screw-up going to f***ing kill me?” was also greeted with amused reassurances. Mixed cellularity diagnoses are treated as negative prognostic indicators, but there’s a bit of a chicken-and-egg problem with treating it as a straightforward indicator. That is because mixed cellularity tends to appear in tumors that have left the upper chest (e.g. advanced, metastatic disease), in older patients, and in AIDS patients. It is not clear that higher death rates among these patients are the result of mixed cellularity per se (and not their age, AIDS, and/or advanced disease).
Issue #2: Polarized Disagreement about My Treatment: You might recall that my doctor at Georgetown was adamant that a) I will have a recurrence of my cancer without radiation and b) radiation is worth the risks, while the NIH doctors said a) I am very unlikely to have a recurrence and b) radiation is really dangerous. The wide gulf between their opinions was, to some extent, my and my mom’s fault – we knew that my oncologist follows an aggressive treatment philosophy and that the NIH has been leading the charge to scale back the use of radiation on Hodgkin’s patients.
Nonetheless, I was surprised at the vehement, borderline-hostile nature of the resulting disagreement. For a non-scientist, it is very frustrating to see two teams of doctors who read the same studies, have the same degrees in the same field look at the exact same data and reach the opposite conclusions. Since I work in the social sciences, I’ve unthinkingly accepted a somewhat idealized portrayal of the “hard sciences,” where one can perform controlled, randomized experiments. I expect hard answers from hard scientists, and it infuriates me when I don’t get them (insert childish foot-stamping here).
One of the first things I demanded when I met the doctor who supplied my third (tie-breaking) opinion was an explanation of why the other two opinions were so different. The first answer was disturbingly… sociological: doctors can get sucked into dogmas that are similar to ideologies. When you think cancer should be treated with a hammer, all the tumors look like nails. The second answer was a bit more disturbing, because it involves a medical mistake (see #3).
Issue#3: Bulky Or Not? One of the core arguments made by the NIH doctors was that my disease did not meet the “bulky” standard for automatic radiation treatment. It is standard practice to use radiation on tumors that are large enough to take up 1/3rd of the maximal diameter of the chest, or are greater than 10cm in diameter. Because bulky disease is harder to cure and more likely to recur, the rationale for radiation is strong in such cases. The NIH doctors claimed that my tumor was 8.5cm at the most, so it didn’t qualify. Hence if this argument is correct, even a conservative/aggressive oncologist wouldn’t be justified in irradiating me. If you read the “informal opinion” e-mail I posted here, you will note that the doctor specifically refers to my disease as “non-bulky.” Thus, both “no radiation” recommendations assumed non-bulkiness.
It was not until I went to see the oncologist who wrote the informal opinion at Massachusetts General Hospital this Friday (see: http://www.massgeneral.org/cancer/locator/search_clinician.asp?id=488) that this got cleared up. This doctor gets super high marks from me for asking me to tell him, from start to finish, how I perceived what had happened to me, from beginning to end. Other doctors consult files (written by other doctors) and might even read parts of the file aloud and ask the patient to confirm them. But this particular doctor put away the files (which he had read even before meeting me) and asked for a first-person narrative account. When I provided it, he realized that he had made a critical mistake: he based his opinion on the wrong tests.
This requires an explanation, which I will offer forthwith - feel free to skip this paragraph if you want to. In a normal case of cancer, the earliest, the best and most comprehensive scans are the ones used for staging. The initial scan is used to determine the stage of the disease prior to treatment, and follow-up scans are used to measure the effects of surgery/chemo/radiation. In my case, this did not happen. When I arrived at the hospital, my major veins and arteries were being twisted around by a big tumor, and it was compressing my trachea: my airway was 4mm wide. (Thought experiment: imagine spending two weeks breathing through a straw less than half a centimeter in diameter. That was me circa 12/2007) This presented a number of very serious health risks. To avoid brain damage, hypoxia, death, etc., even before they knew what kind of cancer it was, they were doing things to shrink the tumor and open up my airway. I got high doses of steroids and two radiation treatments. Only after my airway had been cleared up, did they formally stage the disease.
So, my first staging scan happened after I had been treated with steroids and radiation for about a week. As a consequence, the tumor had already shrunk from its maximum diameter in the staging scan. So, the Mass General doctor who wrote the informal opinion re-measured the tumor, checking its diameter in my first (non-staging) scan and found that it was well over both the 1/3 of chest diameter and 10 cm. requirements for bulkiness.
When he factored bulky disease into his analysis, his conclusion changed. He now thinks that to not perform radiation would be a serious gamble. He estimates a 15% probability that I will have a recurrence if I do not undergo radiation (or, an 85% chance I am “cured”). Survival rates for recurrent Hodgkin’s are about 50%. Hence, without radiation, there is a 7.5% probability I will die. No one has ever performed a study comparing the survival and recurrence rates of patients with bulky disease who receive radiation and chemotherapy to chemo alone. However, the fact that no one was willing to do such a study is suggestive – no researcher thinks it is worth the risk. Furthermore, none of the long-term radiation side-effect studies account for technological innovations in radiation therapy that have occurred in the last decade. So no one really knows what my odds are in either scenario (e.g. the hard scientists are guessing about my life/death). Either way, this doctor, who clearly doesn’t hesitate to counsel against radiation, now thinks I should get radiation. It is unclear whether the NIH team would change their conclusions if they realized they were looking at the wrong scan. I’m not sure if that really matters: if they reevaluate the evidence in light of bulkiness and change their minds, I should disregard their negative opinion and get radiation. If they don’t reevaluate, that suggests that they are ideologically opposed to radiation (e.g. biased) and I should get radiation.
I’m not sure what I will end up doing, but I’ll probably decide soon. If you have a strong opinion, feel free to e-mail it to me, and I’ll thank you and feel free to accept… or disregard it.
Sidenote: thanks to everyone who has e-mailed me recently – I’ve been too caught up in stuff to respond, but I do plan to get back to you.
1 year ago • 0 notes