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.

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

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.

Good luck, I hope it works out.

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

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

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

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.

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.

Paternalistic or patronizing?

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

What?
Damn, that definition doesn't exactly jibe with my thoughts either. :blush:

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.

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.

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.

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.

I curious why this happens, is it because there are two types of patients?

The Duh ~ They look at the doctor slack jawed and say OK to anything and everything.

Questioner ~ They want to know, and have probably read everything online about, what they were tested for, including the quacks. They'll ask why these things didn't come up in the doc's recommendations. So the doctor pulls a TW hoping they'll shut up and let him get on with his/her day.

Shit, Ortho. I didn't realize you had a female surgeon, I would have warned you off that choice. There is an inherent conflict of interest there. Male surgeons will want to do the best job on you, for all the right and wrong reasons. Women are in an eternal state of competition.

Painted with my cynical broad* brush



*see what I did there?

From Wikipedia: An N of 1 trial is a clinical trial in which a single patient is the entire trial, a single case study. A trial in which random allocation can be used to determine the order in which an experimental and a control intervention are given to a patient is an N of 1 randomized controlled trial. The order of experimental and control interventions can also be fixed by the researcher.

This type of study has enabled practitioners to achieve experimental progress without the overwhelming work of designing a group comparison study. It can be very effective in confirming causality. This can be achieved in many ways. One of the most common procedures is the ABA withdrawal experimental design, where the patient problem is measured before a treatment is introduced (baseline) and then measured again during the treatment and finally when the treatment has terminated. If the problem vanished during the treatment it can be established that the treatment was effective.

I did my first degree at McMaster, where Gord Guyatt was King of evidence-based medicine. He later renounced all connection with the concept, but nevertheless the usefulness of the 'N of 1' study remains.

Hahaha foot3 ... laughing but you're so right, unfortunately.

I learned some time ago not to go to a female hairdresser. Somehow I thought women would have each others' backs when it came to breast cancer surgery. Silly me.

Women, for the most part, seem to enjoy engaging in perpetual competition. I know my surgeon was pissed at me for questioning her and for asking about alternative procedures. I didn't have anything firmly in mind, just wanted to know about all the options and her opinions of them, but she took offense and just got up and walked out of the room. It was one of those really bad moments ... and then a meek older woman came in a moment later and offered me a handmade small pillow to cushion my chest/surgical area post-mast, and a card with her phone number. She was a volunteer with the ACS.

I'd been completely professional and all about the research until the moment the surgeon got up and walked out. When the volunteer came in and offered me the pillow she'd made, I burst into tears.

We had a training Friday and I got to see the woman on woman violence up close and personal. Some of our classrooms are truly broken because women compete for power over one another. Its completely opposite of the common view of cooperative women.