(A quick word to everyone in this group. Wherever you are in this ordeal with prostate cancer, it is unique to you. Your reactions to treatments won’t be exactly like anyone else’s. There are enough similarities in the side effects that we can feel empathy to whatever someone is going through, but we can’t know exactly how it affects a person’s general feeling of wellbeing.
With that in mind, I would like to caution the group on telling a person that has decided to end whatever treatment they’re on that they are “giving up.” The decision to end treatment is a very personal one, and usually that decision is reached by looking at a bunch of info that an outsider might not be privy to. If you and your family and your docs feel that treatments are no longer effective, and the side effects ruin your quality of life without seeing an appreciable gain against the disease, the decision to end treatment is totally understandable.
I wrote the above statement as a post in a prostate cancer support group that I am a part of. It was in response to a number of people who called into question a member of the group that was thinking about stopping treatment. He had done all the things he was supposed to to fight the disease. Surgery, radiation, chemo, ADT, immunotherapy, you name it, this righteous survivor had fought hard.
But the cracks were beginning to appear. He was sick of the treatments, not to mention the treatments were making him sick, and he basically asked when was enough, enough. Most of the people that responded were sympathetic, having been through a lot of the same crappy options that is prostate cancer treatment. But some were adamant that he continue to get treatments, that if he decided to stop, this would be “giving up.”
Now, believe me, I totally understand this kind of thinking. As humans, we’ve always had a strong survival mentality, which came in handy when fighting off a bear for a fresh fish dinner back in the day. It also helps to have that basic instinct for self preservation when you’re battling the crowds at Best Buy for a great sale on a flat screen in the wee hours of Black Friday.
We’re natural fighters. Human development has been going on for over 200,000 years, and it continues to this day because we’re a scrappy bunch.
I also respectfully disagree with people that don’t like to call getting a cancer treatment a “fight” or a “battle”. For me, I need it to be a fight. I need it to be a battle. When I wake up on a Thursday the day after getting a big ol’ Lupron shot on Wednesday, I need to feel like I’m in a battle for survival. I need to get up and get moving to continue the fight.
So, when you read the post of someone that is thinking of ending treatment, it’s kind of heartbreaking. Because you want them to keep fighting. Jimmy V. said it from the stage of the ESPYs years ago. “Don’t give up, don’t ever give up.” It’s kind of an ongoing cancer credo.
But, the fact of the matter is this: Sometimes cancer treatments don’t work. Sometimes cancer treatments fall short. And sometimes, they make what you have left of your life miserable. And that’s when a decision needs to be made if continuing treatment is worth it.
This is a very personal decision that is usually arrived at with careful and painstaking thought. Doctors, therapists, family members and the patient are all usually involved in reaching this conclusion. And it sucks.
I don’t consider myself at this stage yet. I’m fully engaged in an ongoing clinical trial, and as long as that keeps working, I’ll continue the fight.
But, I’ve also had a few hard looks at reality for my future. A recent chat with my oncologist has yielded some info that I found a bit discouraging.
I had assumed that if this clinical trial stopped working, there was always the University of Michigan hospital in Ann Arbor. They are renowned for being a top prostate cancer hospital in the world, so I thought that would be my next stop.
However, that turns out to not be the case. My doc told me that U of M actually sends patients to Start Midwest, the clinical trial place I go to here in Grand Rapids. Also, Start Midwest is the largest clinical trial facility in the Midwest, so, yeah, this is it as far as clinicals go in this region of the country.
The other thing I was hopeful about was that if the trial stopped working, my regular oncologist told me there are other chemotherapies that we could try. But, alas, the two most proven chemotherapy treatments for prostate cancer are docetaxel and Jevtana. I’ve already tried them, with no success at shrinking my tumors. Further chemo treatments would most likely be of little effect, and would also severely effect my quality of life.
And getting into another clinical trial is a bit of a crapshoot. I was lucky to be a perfect candidate for the one I’m in now, but, if this fails and I need another one, would I be a perfect candidate again? Probably not.
If this seems to be a Debbie Downer of a post, I apologize. It’s just that everyday I stare at the reality of this disease, and as much as I know I need to fight and try to keep a positive attitude, that reality sometimes kicks me to the ground.
Recently, I’ve been getting some nasty pains in my abdomen, and it’s hard for me to wear jeans with a belt or other societal normal clothes. The tumor in my abdomen is right by my waistline, and flares up when I wear regular clothes. I’ve become Captain Sweatpants lately, just because it’s less painful. Pain is in my future, and I’m not looking forward to it.
As time goes by, I know I will have some decisions to make. My friends and family and docs will all be involved, but ultimately it will be my decision. My hope is that my decision will be respected by others, and that people will realize that there are many factors that go into that decision.
I’m still in the fight. I will continue to battle. But pain has become a factor.
And I’m getting tired.
Thanks for reading.