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purple-couch · 27 days ago

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A guide, might be useful

How to have cancer

THIS WEEKEND (November 8-10), I'll be in TUCSON, AZ: I'm the GUEST OF HONOR at the TUSCON SCIENCE FICTION CONVENTION.

I've got cancer but it's probably (almost certainly, really) okay. Within a very short period I will no longer have cancer (at least for now). This is the best kind of cancer to have – the kind that is caught early and treated easily – but I've learned a few things on the way that I want to share with you.

Last spring, my wife put her arm around my waist and said, "Hey, what's this on your rib?" She's a lot more observant than I am, and honestly, when was the last time you palpated your back over your left floating rib? Sure enough, there was a lump there, a kind of squishy, fatty raised thing, half a centimeter wide and about four centimeters long.

I'm a 53 year old man with a family history of cancer. My father was diagnosed with lymphatic cancer at 55. So I called my doctor and asked for an appointment to have the lump checked over.

I'm signed up with Southern California Kaiser Permanente, which is as close as you come to the Canadian medicare system I grew up under and the NHS system I lived under for more than a decade. Broadly speaking, I really like KP. Its app – while terrible – isn't as terrible as the other apps, and they've taken very good care of me for both routine things like vaccinations and checkups, and serious stuff, like a double hip replacement.

Around the time of The Lump, I'd been assigned a new primary care physician – my old one retired – and so this was my first appointment with her. I used the KP app to book it, and I was offered appointments six weeks in the future. My new doc was busy! I booked the first slot.

This was my first mistake. I didn't need to wait to see my PCP to get my lump checked over. There was really only two things that my doc was gonna do, either prod it and say, "This is an extremely common whatchamacallit and you don't need to worry" or "You should go get this scanned by a radiologist." I didn't need a specific doctor to do this. I could have ridden my bike down to the KP-affiliated Urgent Care at our local Target store and gotten an immediate referral to radiology.

Six weeks go by, and my doc kind of rolls the weird lump between her fingers and says, "You'd better go see a radiologist." I called the Kaiser appointment line and booked it that day, and a couple weeks later I had a scan.

The next day, the app notified me that radiology report was available in my electronic heath record. It's mostly technical jargon ("Echogenic areas within mass suggest fatty component but atypical for a lipoma") but certain phrases leapt out at me: "malignant masses cannot be excluded. Follow up advised."

That I understood. I immediately left my doctor a note saying that I needed a biopsy referral and set back to wait. Two days went by. I left her a voice message. Another two days went by. I sent another email. Nothing, then a weekend, then more nothing.

I called Kaiser and asked to be switched to another Primary Care Physician. It was a totally painless and quick procedure and within an hour my new doc's intake staff had reviewed my chart, called me up, and referred me for a biopsy.

This was my second mistake. When my doctor didn't get back to me within a day, I should have called up KP and raised hell, demanding an immediate surgical referral.

What I did do was call Kaiser Member Services and file a grievance. I made it very clear that when I visited my doctor, I had been very happy with the care I received, but that she and her staff were clearly totally overloaded and needed some kind of administrative intervention so that their patients didn't end up in limbo.

This is a privilege. I'm a native English speaker, and although I was worried about a serious illness, I didn't have any serious symptoms. I had the ability and the stamina to force action in the system, and my doing so meant that other patients, not so well situated as I was, would not be stuck where I had been, with fewer resources to get un-stuck.

The surgeon who did the biopsy was great. He removed my mass. It was a gross lump of yellowy-red gunk in formaldehyde. He even let me photograph it before it went to pathology (warning, gross):

https://www.flickr.com/photos/doctorow/54038418981/

They told me that the pathology would take 2-5 days. I reloaded the "test results" tab in the KP website religiously after 48 hours. Nothing was updated. After five days, I called the surgical department (I had been given a direct number to reach them in case of postsurgical infections, and made a careful note of it).

It turned out that the pathology report had been in hand for three days at that point, but it was "preliminary" pending some DNA testing. Still, it was enough that the surgeon referred me to an oncologist.

This was my third mistake: I should have called after 48 hours and asked whether the pathology report was in hand, and if not, whether they could check with pathology. However, I did something very right this time: I got a phone number to reach the specialist directly, rather than going through the Kaiser main number.

My oncologist appointment was very reassuring. The oncologist explained the kind of cancer I had ("follicular lymphoma"), the initial prognosis (very positive, though it was weird that it manifested on my rib, so far from a lymph node) and what needed to happen next (a CT/PET scan). He also walked me through the best, worst and medium-cases for treatment, based on different scan outcomes. This was really good, as it helped me think through how I would manage upcoming events – book tours, a book deadline, work travel, our family Christmas vacation plans – based on these possibilities.

The oncologist gave me a number for Kaiser Nuclear Medicine. I called them from the parking lot before leaving the Kaiser hospital and left a message for the scheduler to call me back. Then I drove home.

This was my fourth mistake. The Kaiser hospital in LA is the main hub for Kaiser Southern California, and the Nuclear Medicine department was right there. I could have walked over and made an appointment in person.

Instead, I left messages daily for the next five days, waited a weekend, then called up my oncologist's staff and asked them to intervene. I also called Kaiser Member Services and filed an "urgent grievance" (just what it sounds like) and followed up by filing a complaint with the California Patient Advocate:

https://www.dmhc.ca.gov/

In both the complaint and the grievance, I made sure to note that the outgoing message at Nuclear Medicine scheduling was giving out false information (it said, "Sorry, all lines are busy," even at 2am!). Again, I was really careful to say that the action I was hoping for was both a prompt appointment for me (my oncologist had been very insistent upon this) but also that this was a very broken system that would be letting down every patient, not me, and it should be fixed.

Within a couple hours, I had a call back from KP grievances department, and an hour after that, I had an appointment for my scan. Unfortunately, that was three weeks away (so much for my oncologist's "immediate" order).

I had the scan last week, on Hallowe'en. It was really cool. The gadget was awesome, and the rad-techs were really experienced and glad to geek out with me about the way the scanner and the radioactive glucose they infused in me interacted. They even let me take pictures of the scan visualizations:

https://www.flickr.com/photos/doctorow/54108481109/

The radiology report was incredibly efficient. Within a matter of hours, I was poring over it. I had an appointment to see the doc on November 5, but I had been reading up on the scans and I was pretty sure the news was good ("No enlarged or FDG avid lymph nodes are noted within the neck, chest, abdomen, or pelvis. No findings of FDG avid splenic or bone marrow involvement").

There was just one area of concern: "Moderate FDG uptake associated with a round 1.3 cm left inguinal lymph node." The radiologist advised the oncologist to "consider correlation with tissue sampling."

Today was my oncology appointment. For entirely separate reasons, I was unable to travel to the hospital today: I wrenched my back over the weekend and yesterday morning, it was so bad that I couldn't even scratch my nose without triggering unbearable spams. After spending all day yesterday in the ER (after being lifted out of my house on a stretcher), getting MRIs and pain meds, I'm much better off, though still unable to get out of bed for more than a few minutes at a time.

So this morning at 8:30 sharp, I started calling the oncology department and appointment services to get that appointment changed over to a virtual visit. While I spent an hour trying various non-working phone numbers and unsuccessfully trying to get Kaiser appointment services to reach my oncologist, I tried to message him through the KP app. It turns out that because he is a visiting fellow and not staff, this wasn't possible.

I eventually got through to the oncology department and had the appointment switched over. The oncology nurse told me that they've been trying for months to get KP to fix the bug where fellows can't be messaged by patients. So as soon as I got off the phone with her, I called member services and filed another grievance. Why bother, if I'd gotten what I needed? Same logic as before: if you have the stamina and skills to demand a fix to a broken system, you have a duty to use them.

I got off the phone with my oncologist about an hour ago. It went fine. I'm going to get a needle biopsy on that one suss node. If it comes back positive, I'll get a few very local, very low-powered radiation therapy interventions, whose worst side effect will be "a mild sunburn over a very small area." If it's negative, we're done, but I'll get quarterly CT/PET scans to be on the safe side.

Before I got off the phone, I made sure to get the name of the department where the needle biopsy would be performed and a phone number. The order for the biopsy just posted to my health record, and now I'm redialing the department to book in that appointment (I'm not waiting around for them to call me).

While I redial, a few more lessons from my experience. First, who do you tell? I told my wife and my parents, because I didn't want to go through a multi-week period of serious anxiety all on my own. Here, too, I made a mistake: I neglected to ask them not to tell anyone else. The word spread a little before I put a lid on things. I wanted to keep the circle of people who knew this was going on small, until I knew what was what. There's no point in worrying other people, of course, and my own worry wasn't going to be helped by having to repeat, "Well, it looks pretty good, but we won't know until I've had a scan/my appointment/etc."

Next, how to manage the process: this is a complex, multi-stage process. It began with a physician appointment, then a radiologist, then a pathology report, then surgery, then another pathology report, then an oncologist, then a scan, then another radiologist, and finally, the oncologist again.

That's a lot of path-dependent, interdepartmental stuff, with a lot of ways that things can fall off the rails (when my dad had cancer at my age, there was a big gap in care when one hospital lost a fax from another hospital department and my folks assumed that if they hadn't heard back, everything was fine).

So I have been making extensive use of a suspense file, where I record what I'm waiting for, who is supposed to provide it, and when it is due. Though I had several places where my care continuity crumbled some, there would have been far more if I hadn't done this:

https://pluralistic.net/2024/10/26/one-weird-trick/#todo

The title of this piece is "how to have cancer," but what it really boils down to is, "things I learned from my own cancer." As I've noted, I'm playing this one on the easiest setting: I have no symptoms, I speak and write English fluently, I am computer literate and reasonably capable of parsing medical/technical jargon. I have excellent insurance.

If any of these advantages hadn't been there, things would have been a lot harder. I'd have needed these lessons even more.

To recap them:

See a frontline care worker as soon as possible: don't wait for an appointment with a specific MD. Practically any health worker can prod a lump and refer you for further testing;

Get a direct phone number for every specialist you are referred to (add this to your phone book); call them immediately after the referral to get scheduled (better yet, walk over to their offices and schedule the appointment in person);

Get a timeframe as to when your results are due and when you can expect to get a follow-up; call the direct number as soon as the due-date comes (use calendar reminders for this);

If you can't get a call back, an appointment, or a test result in a reasonable amount of time (use a suspense file to track this), lodge a formal complaint with your insurer/facility, and consider filing with the state regulator;

Think hard about who you're going to tell, and when, and talk over your own wishes about who they can tell, and when.

As you might imagine, I've spent some time talking to my parents today as these welcome results have come in. My mother is (mostly) retired now, and she's doing a lot of volunteer work on end-of-life care. She recommends a book called Hope for the Best, Plan for the Rest: 7 Keys for Navigating a Life-Changing Diagnosis:

https://pagetwo.com/book/hope-for-the-best-plan-for-the-rest/

I haven't read it, but it looks like it's got excellent advice, especially for people who lack the self-advocacy capabilities and circumstances I'm privileged with. According to my mom, who uses it in workshops, there's a lot of emphasis on the role that families and friends can play in helping someone whose physical, mental and/or emotional health are compromised.

So, that's it. I've got cancer. No cancer is good. This cancer is better than most. I am almost certainly fine. Every medical professional I've dealt with, and all the administrative support staff at Kaiser, have been excellent. Even the doc who dropped the ball on my biopsy was really good to deal with – she was just clearly drowning in work. The problems I had are with the system, not the people. I'm profoundly grateful to all of them for the help they gave me, the interest and compassion they showed, and the clarity and respect they demonstrated in my dealings with them.

I'm also very grateful to my wife, my parents, and my boss at EFF, all of whom got the news early and demonstrated patience, love, and support that helped in my own dark hours over the past couple of months.

I hope you're well. But you know, everyone gets something, eventually. When you find yourself mired in a broken system full of good people, work the system – for yourself and for the people who come behind you. Take records. Make calls.

Look after yourself.

If you'd like an essay-formatted version of this post to read or share, here's a link to it on pluralistic.net, my surveillance-free, ad-free, tracker-free blog:

https://pluralistic.net/2024/11/05/carcinoma-angels/#squeaky-nail

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