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orthodoc 01-28-2014 11:11 PM

This doctor's personal choices
 
I'm quitting hormonal therapy for my breast cancer. I fought through surgery and chemo and all they did to me and took from me, but 10+ years on this hormonal chemo is a tradeoff I'm not willing to make.

I haven't had a day of 'normal' temperature since starting hormonal 'therapy'. With tamoxifen, it was endless drenching hot flashes. They drenched my clothes, including my heavy cotton lab coat. All of it, soaked. Not all right when it'd happen predictably at 0800, before the first patient came in. Arimidex gives me a twofer: hot flashes AND cold chills. Not an improvement. Worse, Arimidex gives me suicidal depression and joint pain so bad that I can barely walk.

Tamoxifen raises my chance of blood clots and cataracts, plus some retinal destruction and depression. Arimidex raises my chances of osteoporosis-induced fractures, severe joint pain, arthritis (permanent damage as opposed to subjective pain), severe depression, headaches.

I already have spread, and these drugs aren't likely to do much about that. Exercise and soy have been shown to do more, so I'm going to go with those.

I hope that, after a few weeks (Arimidex has a ridiculously long half-life), my joint pain will decrease to where I can walk without a limp and actually be able to do what I need to do in the day. I hope that I'll go back to having some more or less normal thermoregulation. I hope that my risk of cataracts and further eye damage will retreat to baseline.

Some things aren't worth living with. I already have the damned cancer. I refuse to have the rest of my life made unbearable by medications that stand only a small chance of prolonging my life (and that's a population statistic that means nothing to the individual).

That's my choice. I'd rather have ten good years without this joint pain and depression than have twenty miserable, quasi-suicidal years. I want to dance, want to waltz and tango and listen to jazz and hike and ride horses again.

Aliantha 01-28-2014 11:59 PM

Personally, i think you have made a good decision, and in ten years, who knows what better alternatives there might be.

Heres to better days coming. Xxx

Sundae 01-29-2014 04:45 AM

It's an informed decision, and it's your decision.
I think that's as good as it gets.

Let us know how it's going.

Griff 01-29-2014 06:17 PM

Good luck, I hope it works out.

Clodfobble 01-29-2014 06:18 PM

I hope you'll be feeling better soon, ortho. You deserve a break, after all you've been through.

orthodoc 01-29-2014 06:20 PM

Thanks. These meds have played havoc with my moods; I'm crossing my fingers that things will improve quickly.

Big Sarge 01-30-2014 08:57 AM

I think it is the best choice. Refusing some of my treatments have improved my life. Do what makes you happy

wolf 01-31-2014 12:02 AM

I support that you are making an informed choice after considering the risks and benefits. All too often our care providers leave side effects or of the equation.

orthodoc 02-01-2014 01:00 AM

My initial oncologist was unbearably paternalistic. I couldn't stand him, despite his stellar reputation (he just left to head up the Cleveland Clinic Breast Cancer program). He never let me know what to expect - I always had to experience the worst, research it, and then have him (or his mid-level, most often) tell me that of course this happens all the time. It was insulting, an attitude of 'don't let them know what might happen, or they'll just imagine it'.

My recent oncologist is more honest. He was worried from the outset that Arimidex might make my arthritis unbearable. He didn't mention other side effects, but at least he was honest in one regard.

Whatever happens after this, at least I know that I'm in charge. I can deal with that. Thank you, all.

footfootfoot 02-03-2014 06:15 AM

Paternalistic or patronizing?

Never mind, I just checked the definition of paternalistic and found I'd been using wrong for years.

xoxoxoBruce 02-03-2014 10:40 AM

Quote:

A policy or practice of treating or governing people in a fatherly manner, especially by providing for their needs without giving them rights or responsibilities.
What?
Damn, that definition doesn't exactly jibe with my thoughts either. :blush:

Sundae 02-03-2014 12:51 PM

Paternalistic isn't the same as paternal in the same way that feminine isn't the same as feminist.
But then I didn't know the difference between inebriated and ameliorated, so I'm not scoffing.

orthodoc 02-03-2014 07:48 PM

Thanks, foot3 and Bruce. One of the hardest aspects of this journey was being treated like shit by a female surgeon who went on to do a terrible job on my mastectomy, and then being treated like a small child by my oncologist. When you're facing the biggest crisis of your life you hope that the people caring for you will take you seriously.

orthodoc 02-03-2014 08:04 PM

Addendum: it's been five days since discontinuing Arimidex and I've had no suicidal thoughts. It's early in the n=1 trial, but positive indicators are strong.

glatt 02-03-2014 08:41 PM

I have no idea what the n=1 thing means, but I'm really pleased that the suicidal thoughts aren't there any more.

You clearly know what you are doing.


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