This doctor's personal choices

orthodoc · 01-28-2014, 11:11 PM

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.

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.

01-28-2014, 11:11 PM	#1
orthodoc Not Suspicious, Merely Canadian Join Date: Oct 2006 Posts: 3,774	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. __________________ The greatness of a nation and its moral progress can be judged by the way its animals are treated. - Ghandi

01-28-2014, 11:59 PM	#2
Aliantha trying hard to be a better person Join Date: Jan 2006 Location: Brisbane, Australia Posts: 16,493	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 __________________ Kind words are the music of the world. F. W. Faber

01-29-2014, 04:45 AM	#3
Sundae polaroid of perfection Join Date: Sep 2005 Location: West Yorkshire Posts: 24,185	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. __________________ Life's hard you know, so strike a pose on a Cadillac

01-29-2014, 06:17 PM	#4
Griff still says videotape Join Date: Feb 2001 Posts: 26,813	Good luck, I hope it works out. __________________ If you would only recognize that life is hard, things would be so much easier for you. - Louis D. Brandeis

01-29-2014, 06:18 PM	#5
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	I hope you'll be feeling better soon, ortho. You deserve a break, after all you've been through. __________________ My book My other book My spirit animal

01-29-2014, 06:20 PM	#6
orthodoc Not Suspicious, Merely Canadian Join Date: Oct 2006 Posts: 3,774	Thanks. These meds have played havoc with my moods; I'm crossing my fingers that things will improve quickly. __________________ The greatness of a nation and its moral progress can be judged by the way its animals are treated. - Ghandi

01-30-2014, 08:57 AM	#7
Big Sarge Werepandas - lurking in your shadows Join Date: Jun 2008 Location: In the Deep South Posts: 3,408	I think it is the best choice. Refusing some of my treatments have improved my life. Do what makes you happy __________________ Give a man a match, & he'll be warm for 20 seconds. But toss that man a white phosphorus grenade and he'll be warm for the rest of his life.

01-31-2014, 12:02 AM	#8
wolf lobber of scimitars Join Date: Jul 2001 Location: Phila Burbs Posts: 20,774	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. __________________ wolf eht htiw og "Conspiracies are the norm, not the exception." --G. Edward Griffin The Creature from Jekyll Island High Priestess of the Church of the Whale Penis

02-01-2014, 01:00 AM	#9
orthodoc Not Suspicious, Merely Canadian Join Date: Oct 2006 Posts: 3,774	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. __________________ The greatness of a nation and its moral progress can be judged by the way its animals are treated. - Ghandi

02-03-2014, 06:15 AM	#10
footfootfoot To shreds, you say? Join Date: Aug 2004 Location: in the house and on the street-how many, many feet we meet! Posts: 18,449	Paternalistic or patronizing? Never mind, I just checked the definition of paternalistic and found I'd been using wrong for years. __________________ The internet is a hateful stew of vomit you can never take completely seriously. - Her Fobs

02-03-2014, 12:51 PM	#12
Sundae polaroid of perfection Join Date: Sep 2005 Location: West Yorkshire Posts: 24,185	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. __________________ Life's hard you know, so strike a pose on a Cadillac

02-03-2014, 07:48 PM	#13
orthodoc Not Suspicious, Merely Canadian Join Date: Oct 2006 Posts: 3,774	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. __________________ The greatness of a nation and its moral progress can be judged by the way its animals are treated. - Ghandi

02-03-2014, 08:04 PM	#14
orthodoc Not Suspicious, Merely Canadian Join Date: Oct 2006 Posts: 3,774	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. __________________ The greatness of a nation and its moral progress can be judged by the way its animals are treated. - Ghandi

02-03-2014, 08:41 PM	#15
glatt ™ Join Date: Jul 2003 Location: Arlington, VA Posts: 27,717	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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