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The diagnosis (boingboing.net)
233 points by danso on Dec 9, 2011 | hide | past | web | favorite | 39 comments



I shudder to think what could have happened, had she delayed the exam. From what I understand, she was not in a risk group and didn't yet require periodic exams. Not many people will jump through the hoops unless they have been told by a doctor that it is something they need to do.

And that's not even counting the heavy procrastinators, such as myself, that will postpone exams even when the doctor asks for them. Which reminds me...

In any case, I find the bureoucracy a pain. For most exams, you have to schedule an appointment in advance. Depending on what prompted you to seek medical help in the first place, you might even be feeling better already. Too many times I have been told that there was nothing wrong - no kidding, I was feeling better already.

Don't even get me started on how hard it is to find good doctors...

I believe we are reaching a point where we have the technology to cure most maladies, but which doesn't do us any good because it is not applied consistently enough, even disregarding economic factors.

I guess that's why the Star Trek's sick bay appeals to so many people. It is not hard to envy a future where one just has to walk-in with an obscure disease, get state-of-the-art scans, done by one of the very best doctors, who will not stop until he finds what's wrong. And not go broke afterwards.

Yeah, give me that over a transporter any day.


Were she to delay the exam, her life would have gone on pretty normal for a while, Eventually the lump, the cancer, would have grown, all the while trying to sneak into the rest of the body. Perhaps she would have eventually made it into a GP, and not a place that specialized diagnosing breast cancer. Lumps are normal, she's young, it's probably not anything to worry about, come back if it grows.

It's cancer, of course it grows, she goes back in a couple of months, eventually it's large enough to warrant removal regardless of what it is, they'll do the biopsy after they remove it.

Biopsy comes back, now she know it's cancer, but hopefully it's not too far along. They get her a PET scan, hopefully it's not in the blood.

The PET scan comes back, it confirms multiple tumors in the body. Metastatic, they call it. Atleast that explains the back-pain. Her options are limited now, there are treatments that can slow the growth, but not much hope in the way of getting rid of the cancer.

Chemo is much less useful at this stage, Chemo is a much more distant worry now, loosing your hair a much more distant worry, which makes it feel, a bit less real. The treatment is still very minor. She still feels pretty healthy all things considering, and this is just what the doctors are telling her. It's not real, but again, the cancer doesn't much care.


I don’t think they ignore lumps on the basis that you are young because cancers in younger people grow significantly faster.


You wrongly assume that all doctors think the same way.


Part of the problem is not just the cost of things like full body scans but the interpretation of the results. From what I understand, these scans tend to turn up all sorts of things that may or may not be anything serious; but all of which, once found, requires follow up.

This is exacerbated by malpractice lawsuits "But there was a spot on the scan 12 months ago, why didn't you do anything!". It wouldn't surprise me if doctors would be willing to use such technology even if it became cost feasible.


>From what I understand, these scans tend to turn up all sorts of things that may or may not be anything serious; but all of which, once found, requires follow up.

It's really worse than that. Most of the tests they end up doing with they spot some kind of abnormality have some risk associated - x-rays increase your risk of cancer, for example, and anything that penetrates the skin carries some statistical risk of infection.

Where I live there are companies offering these full-body scan deals, where for an exorbitant amount of money they run your entire body through an MRI machine and then have someone look at the results. What they're finding is the risks associated with the follow-on tests (xrays, biopsies, etc) outweigh the risk that you'll miss something curable. In other words, statistically you're actually shortening your life by having one of these scans.


> the risks associated with the follow-on tests (xrays, biopsies, etc) outweigh the risk that you'll miss something curable

And that doesn't even cover the psychological effects that can come from false-positives.


>I shudder to think what could have happened, had she delayed the exam.

There's a good chance nothing would have happened. Screening programs massively overdiagnose non-malignant breast cancer as malignant: http://www.bmj.com/content/339/bmj.b2587.abstract


That article claims a 35% overdiagnosis rate. While high, I wouldn't call that a good chance and wouldn't bet my life on it.


Bowel screening problems throw up issues with mortality too. I was at a recent review of screening at a group of UK hospitals and it was found that the average age of death is the same for those with bowel cancer that were detected by screening, detected by accident, detected after an emergency or detected at autopsy.


A 35% overdiagnosis rate means that for every 3 correct cancer diagnoses made, about one error occurs. That means if the diagnosis is cancer, about 75% of the time it actually is cancer. If the rate of false negatives is small enough, I think I would bet my life on that.

Edit: Sorry, I just noticed that what I wrote seems to imply I disagree with you when, in fact, I agree with you.


>I believe we are reaching a point where we have the technology to cure most maladies,

Not to cherry pick or anything, but most cancers still have a fairly high death rate. And chronic leukemias, for instance, are incurable.


So is existing, to be fair.


Considering the way I drive my bike, a transporter would properly be more likely to save my life.

On the other hand, can't we have both. I mean, my phone is almost a tricorder...


...and could be today except CBS pulled the tricorder app.

http://www.geek.com/articles/mobile/cbs-demands-removal-of-m...


>From what I understand, she was not in a risk group and didn't yet require periodic exams

Everyone is supposed to do self-exams. There is no consensus on preventative mammograms, some doctors still say to get them, but at different ages. Others say not to do it at all as the risks outweigh the benefits, and mammograms are most useful to diagnose lumps found through normal exams.


My 35 year old sister found out earlier this year that she has Stage IV breast cancer (spread to one of the lymph nodes and into both of her lungs).

I can't express how fortunate we've been that she has responded extremely well to tamoxifen therapy, which seems to have halted growth (and even resulted in some shrinkage) for almost 11 months now. Hers is apparently not a common result. In spite of the frightening diagnosis, she has stayed very active all these months and has suffered almost no ill effects from the treatment (a few pills each day).

As some people have pointed out, the long term prospects aren't good for advanced stages of breast cancer, but last January, the surgical specialist who examined my sister didn't give her more than a year to live. Thankfully we met a spectacular oncologist who has been as much terrific support network as he has been a doctor.

It's worth reading Stephen Jay Gould's great essay on his fight with cancer: "The Median is not the Message"

http://cancerguide.org/median_not_msg.html

He was diagnosed with peritoneal mesothelioma (a cancer of the abdominal lining) and told that the median survival rate for it was 8 months. He researched his cancer and decided he would do whatever was necessary to get on the good side of the median. He was treated with chemo, radiation and surgery, and ended up surviving 20 years (eventually dying from an unrelated metastatic cancer).

I really wish Xeni the best of luck and hope things go well.


It's great to hear your story. My sister, at 22, has just started with a similar treatment.


If you haven't read the article, you should. This is one woman's journey -- being diagnosed with breast cancer. It's amazingly well written.


I was amazed by the laser-guided precision of its emotional payload. The transition from relative playfulness to delivering the realization of the mercilessly impending dread in small portions, always quick to cover it up - only to open it up again shortly after in yet another, more devastating fashion is absolutely ravaging.

Reading it, I was taken by what I imagine to be a homeopathic dose of the feelings that Xeni may have gone through in that situation. The sentences sometimes don't make immediate sense - you have to reread them carefully. And then they hit you. Hit you in a place where you are not sure how to deal with them.


Jardin has always been a fantastic writer. While this news is certainly terrible, the silver lining is the beauty and honesty with which she delivers it.


That's..... really not much of a silver lining in this situation.

I would have gone with caught early, modern medicine, etc, but A for effort.


It was not caught early. It had already metastasized (gone into a lymph node.) It was good she went in when she did, but not going to the doctor for 10 years was pretty stupid.


The only references to ten years were that "Maybe five, eight, even ten years ago, the first bad cell split inside me, secretly." and "Even though I was ten years younger than the time they say you need to start," She went to the doctor soon after noticing the "funny stiffness," not ten years later.


Involvement of a nearby lymph node can still be classified as Stage II.


Stage II is not early, it's actually right in the middle. There are 5 stages: 0, I, II, III and IV. http://www.breastcancer.org/symptoms/diagnosis/staging.jsp


You'd know better than I do, I'm just saying, how ever early it isn't, it's also not "late".


For what it's worth, this makes me want to go get a routine physical again. I've been avoiding it because "I'm a man!" ... but really, men get cancer in our more personal places, too... and often we ignore it/think little of it.

Best to catch these things early.


Is it best to catch prostate cancer early?

The treatment is harsh, and the cancer is slow growing. I understand that many men die with, but not of, prostate cancer. But then maybe I'm totally wrong?


Testicular cancer is probably the more pressing matter.


I was actually referring to testicular cancer


Not to mention doctors have a disturbing (and it honestly seems like this should lead to lawsuits and loss of license) habit of lying about the effects of prostate cancer treatment on men's sex lives [1]. Key quote:

   The findings, based on a study of 1,000 men in different treatment centers, 
   suggests that surgery and radiation treatments take a far greater toll on 
   male potency than most men are led to believe. Among men in the study who 
   reported good sex lives before cancer, fewer than half were able to achieve 
   normal erections two years after treatment.
Also, it's an unattributed quote, but based on some of my interactions with doctors, this rings true:

   Such sobering statistics are a rarity in any discussion of prostate cancer,
   partly because surgeons and cancer experts worry that a man might forgo
   treatment rather than risk his sex life.
Fuck them. That's not their decision to make.

[1] http://www.nytimes.com/2011/09/25/sunday-review/the-side-eff...


There are dozens of things, cancer and others, your doctor can catch and add decades to your life. Go.


"Over the phone, the clinics all sounded like places you'd take a pork chop to be examined, not a human breast, not a person, and not me."

Our technology is improving. Rigorous, evidence-based practice is the standard of care.

And yet we often fail to help.

Oft-used aphorisms in medical training include, "The secret of care of the medical patient is caring about the patient" and "Recommend to your patients what you'd recommend to your own family". Yet that approach often vanishes somewhere during training or soon after. Some may start viewing people as "consumers" rather than "patients".

Compassion is curative, and by that I don't mean a bunch of hand-waving mumbo-jumbo. I mean that people will seek preventive care, trust diagnosis and treatment, stay in treatment, and work with docs when they feel they'll be heard, when their pain and fears (often unspoken) and questions will be addressed, and when their choices will be respected.

For lack of a better phrase, there remains a science and an art to medicine. Both need to advance lock-step.

Best wishes to Xeni. Her writing has always been brave as it is here, and selflessly sharing what she's going through will help others.


Wow. So well written.


Fantastic delivery, doubly so given the gravity of the subject. I sincerely doubt that I could write this well, given the circumstnces.

Here's to hoping that whatever the outcome, she has a speedy recovery and a long life.


Ouch. From the biopsy onwards it just makes me shudder.


Did her lifestyle choices contribute to her getting breast cancer(being overweight, not active, etc)? it would really help to know if it was simply bad luck or if her life decisions were risk factors.


It's hard to say in an individual case. Even with smokers, how can you really say with any certainty, that it was the smoking and not an independently malignant cell that was the seed for lung cancer?

We have group statistics that say healthy diet, getting your vitamin D, etc. are associated with lower incidences of cancer. But on a human level, cancer is not like getting an e. coli infection, where we can point to contaminated food or something as a direct cause.

So personally, I encourage my loved ones to eat well and live healthy and all that jazz. But if heaven forbid they come down with a major illness like cancer, I'd leave their life decisions out of it; as much as we can say with statistics, I don't want them to feel like that last unlucky coin flip was in any way their fault.

TL;DR: I don't know, and people are probably going to downvote you for being insensitive.




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