Saturday, February 25, 2017

Crazy-Making Cancer Treatment

I believe my doctors mean well, I really do, but their behaviour is not dissimilar from the crazy-making type of abuse wherein the abuser keeps telling a different story until the victim starts to question their own memory and doesn't know what to believe any more. I'm really glad I write everything down (and tape record it too - but secret-like because that makes them antsy).

I saw a medical oncologist last December. She was last in a long lineup of doctors who had varying opinions about my medical condition. A panel of doctors thought I should get lymph node surgery just in case cancer spread in there, but she wasn't as convinced. She leaned towards an estrogen inhibitor instead. Just one pill a day to prevent a relapse. She left me with a package of information about the drug, Letrozole, and I wandered off to contemplate my options.

Then I came across this article, which doesn't help maintain my faith in the system:
"It is distressingly ordinary for patients to get treatments that research has shown are ineffective or even dangerous. Sometimes doctors simply haven’t kept up with the science. Other times doctors know the state of play perfectly well but continue to deliver these treatments because it’s profitable — or even because they’re popular and patients demand them. Some procedures are implemented based on studies that did not prove whether they really worked in the first place. Others were initially supported by evidence but then were contradicted by better evidence, and yet these procedures have remained the standards of care for years, or decades."
On the advice of a commenter here (and former colleague), I called CAREpath to help with all the differing opinions. They collected all the medical files generated and assessed them to come up with a comprehensive pros/cons list. Literally. They weighted heavily on the anti-surgery side, with a "risk of cure" rate of 97% without any intervention. In their opinion (a different panel of doctors and nurses that's in Toronto), surgery would only have a marginal effect and wasn't worth the general surgical risks, but the hormone inhibitors might be a good idea.

They suggested I go back to the oncologist to discuss their findings in person and get a prescription for the drugs. So I called, BUT, lo and behold, I'm not at liberty to talk to the oncologist without another referral from my GP. She's the GATE KEEPER of all medical information, and none shall pass without a conversation in person. I made an appointment with her for several weeks later because, no, it's not an emergency, wherein she told me that, according to her notes (which my GP printed out for me) the oncologist said "the benefit to hormone blockade therapy with an aromatase inhibitor based on the information that we have now I feel would be very, very low with a risk of hot flashes, osteoporosis and body aches." Wha....?  My GP was convinced, from the very clear reports she was sent, that the oncologist DOES NOT want to give me hormone blockers.

But I got a referral anyway.

I finally got in yesterday, TWO MONTHS after talking with CAREpath and trying to get back in to see her. She was so glad to see me again, because, apparently TIME IS OF THE ESSENCE. Of course I should have surgery, AND I should start on the hormone blockers TODAY. Which I did. Plus lots of calcium and vitamin D so my bones don't start breaking randomly because that's a big side effect. Somehow the risk assessment went from a 1% chance of a recurrence to a 22% chance without any of my medical information changing. She just plugged in the numbers and got a different result than previously. Or something. I have no idea!!  Tra la la. Actually, I kinda think that 1% was a guess all along, and she finally actually did the risk assessment calculation - even though it just took her two minutes to do it, and she did it on her phone right in front of me. Once one doctor makes a guess, it's just that much easier for the rest to agree with it rather than anyone actually plugging in the numbers.

So it goes.

I told her that last time we met I got the impression she was opposed to the surgery but in favour of the drugs, but then my GP got the very clear impression from her notes that she wasn't in favour of the drugs at all. So this time, she wrote it down and took a picture of it to make sure, in her words, that she dictates her notes more accurately this time.


In her notes that my GP had, she also indicated that she had examined me at that first visit and described the scars as healing well, except she hadn't. My daughter was with me at that appointment and confirmed that I wore a button up shirt just for the occasion, but the doctor declined my offer to see how it all looks. She's very busy, but maybe dictating notes during the appointments would be a better idea than trying to remember what she did and said at the end of the day.

She couldn't find any paper, so she wrote on the end of the protective paper that lines the examining table and gave it to me. It's resourceful, I guess, but you'd think she'd have access to paper somewhere.

It says, I have up to 22% chance of cancer in the lymph nodes. If surgery shows any cancer, then I'd need radiation which will increase my chances of getting lymphedema and I should definitely take Letrozole. If surgery shows no cancer, then there's less chance of lymphedema and drugs might still be a good idea. Without the surgery, I should definitely be on the drugs.

She was clear at least that she might have made an error in her notes last time, and that she had changed her mind about surgery. Apparently she thought of the off chance that there was a cancer there that wasn't being treated, but left to grow, and how horrible it would be to miss something like that. She also said they like to take some of the lymph nodes, maybe half, not all of them, but there can be 5-20 lymph nodes and they like to get at least ten to sample them. I can't believe how little I know about how my body works. Last time I was told they take them all. But whatever.

I asked to see a different surgeon this time, which made everyone very uncomfortable and the oncologist and nurse gave each other looks. They really wanted me to go to the same doctor OR to go out of town. Not for the sake of my health and well being or anything like that, but because it's awkward for the doctor here to find out I'm seeing one of his colleagues. It was an effort to convince them:
He keeps giving me information that's counter to everyone else's information (like that I still need mammograms even though I have no breasts, and that I need radiation when they think they've removed all the cancer). 
They thought that wasn't a big enough deal.  
He's flippant about it all, joking around as he told me about the cancer, and he left a lot of breast tissue behind, which increases my risk of a recurrence.  
It happens. It's not really a problem. 
One more shot: 
He keeps telling me I have to get reconstructive surgery, and he's been clear that he'll try to convince me of it every time I come in. He thinks I'm simply too young to look like this! 
Ding! Ding! Ding!
That hit the jackpot. Nobody should tell you what to do with your body. Apparently that's significantly more important than leaving behind lots of potentially cancerous tissue. So now I get a referral to yet another doctor to do the lymph node surgery, which I was previously convinced I really didn't need, and now I'm told that it should have happened months ago.

She told me to call with any questions - anything at all, but that's impossible. There's a litany of guards and barbed wire fences for me to maneuver if I have any concerns about the drugs she gave me or the advice she suggested. She previously told me that I need a full physical every four months for the first year, and it's been four months, but I'm sure my GP won't know what to do at that. She's been asking me about all the ins and outs of this process. I forgot to ask the oncologist about that. It'll take another two months of scheduling and referrals to weasel my way back into her office. I'm not sure it's worth it.    

The psych descriptions all say to keep your distance from crazy-making people. I'm doing my best, but they have a way of keeping me coming back for more.


ETA: And I really wish I had seen this video at the time, as a doctor explains the way to understand medical risks. It might have tipped the scales for me!


Unknown said...

Marie, having to be so vigilant can't be easy. You want to assume that professionals really know their job, but like anyone, they're rushed and overwhelmed and forgetful. Being your own advocate and taking copious notes (and recording) is the right thing to do.

Imagine if you were a patient with limited English. Or your doctor had limited English (as so often happened when we were dealing with my daughter's autoimmune thing.)

Verbally repeating and writing down prescription amounts, then showing the instructions for verification became the norm. Otherwise, we'd have got things wrong any number of times.

Marie Snyder said...

Yes, I really really worry about patients with limited English or limited understanding of the medical profession or blind faith in doctors. It should be this difficult to get the right information!

Marie Snyder said...

* should NOT be this difficult