The doctor works for YOU!! Thoughts on decision-making

I am a very strong personality, used to being in charge. I had a hundred people working for me before this hit. I make the decisions. I have 4-5 different oncologists and other specialists advising me in MY decision. They all understand that I have assembled a team and they are part of a team. They respect that. I have not listened to any one doctor 100%. Doctors have no problem with informed patients calling the shots. It's about risk and specifically the risk that I will die. And how my body feels is a key part of the equation.

The key word is informed. That is why you constantly hear the wise people on this forum tell everyone to get a second, third or fourth opinion until you feel comfortable with your treatment. That said, on a couple of issues, I listened to none of my doctors.

Which brings up the second key word, comfortable. I can't imagine a treatment working if we are not comfortable with it. If your mind and your body is fighting the treatment, I don't see how it will work.

All that sounds reasonable. The problem is that we are asked to make these decisions and take charge of our care when we are emotionally raw and drugged out of our minds. We are in a weak position. I feel deeply for your friend who seems beaten up by her treatment and probably to weakened by the treatment itself to speak up for herself.

I was surprised at how far I went along with the initial recommendation of my oncologist when I was first diagnosed, even though it had some clear logical flaws. I was just a wreck. But I kept hearing people say "get a second opinion and get a third opinion" and so I wondered like a zombie to 3 more doctors and eventually found a better path and the one I am on now.

This is where taking a break from treatments and the support of friends and family could make a difference. One of the (many) cancer books that emphasizes the value and power of functional medicine might give her the courage to back off the Cleopatra regime at least long enough to clear her head and think this through. The principle of functional medicine is that you strengthen the body's own ability to heal. It's a challenge for all of us to find the right balance between our wellbeing and the side effects. But it seems like your friend is in tears because on some level she understands her body and her wellbeing have been sidelined.

The great thing is that we have so many options and no decision is permanent. If she goes of the Cleopatra regime for a bit and then regrets it, she can go right back on it. If she is beyond the first line treatments, there are so many interesting clinical trials going on. Time for a second opinion.

>Z<

Hi Pajim,

It sounds like there are several things converging here at once:

Your friend's doctor more focused on treating the disease than the patient (assuming her wheel is squeaking loudly);

Your friend's own communication with doctor and deference to "doctor's orders";

Your own frustration over her differing coping and medical decision-making styles.

Pajim, you're right - many (most?) of the bco members I've met share similar approaches to our medical care - informed, engaged, collaborative, willing to work with a team or get a second opinion. Some will pursue the most aggressive and possibly far-fetched treatment options (conventional and/or althernative), while others just want to get back to normal life.

Yet, in my personal life I've known several much less informed patients who are happy to give all the decision-making power to their priests physicians. Medicine is sorta like a religion - we put our faith in different gods and their priests. And sometimes we see others' religions styles as not as good as ours.

I've very strong opinions about my own care, but when others make very different choices, I do my best to listen, understand and support their faith. If they are questioning it, I'm also willing to explore that together. My goal is to support the other person.

Right now, I have several beloveds choosing very aggressive, risky treatments with unwanted effects that they want to complain to me about.

Listening with an open mind and heart is a challenge!

Loving and letting go is my lesson. I am learning how to stay connected in spite of our different approaches.

No real answers, just resonated with your post, because I too am in similar situations with my loved ones.

warmest healing regards, Stephanie

Pajim,

I hear you! My hubby and i are engineers and this stage iv medical world is driving us nuts. We don't like uncertainty, guessing, trial and error, and we are used to trusting each specialty contractor, they know best! None of that applies here...

From what I'm reading, I think we have some confusion about the CLEOPATRA study. It never included carboplatins. The study design was docetaxel, Herceptin and Perjeta. There was never any conclusions about stopping this regimen in the metastatic setting. There isn't an oncologist out there who can tell you whether it's safe or not safe to stop this treatment.

In this particular treatment regimen, the drug that is most responsible for neuropathy is docetaxel. And I developed neuropathy on that drug. But the goal isn't to stay on that drug forever, just 6 doses. The hope is that your nerves will recover after the docetaxel is stopped. My nerves got better, but it's been over a year and I still have neuropathy. Some days are better and some days are worse.

Since the release of the results of the CLEOPATRA study, oncologists have looked at using Herceptin and Perjeta in other treatment settings, including the adjuvant and neoadjuvant setting. In these cases they would use a carboplatin and the goal might be 12 months of treatment. But the risk of neuropathy is strong with the carboplatins.

If my oncologist were to recommend that I start a carboplatin, I would be reluctant to do so because I would not want to reinjure my already damaged nerves. And I would be asking why? The neuropathy can get worse, causing a definite negative impact on the quality of my life.

It's never wrong to discuss your concerns with your oncologists. They know that some treatments aren't tolerated well by their patients, and, in fact, this is one of the major reasons that certain treatments are stopped.