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The Dreaded C Word

There are very few phrases as devastating as “you have cancer”!

Everything seems fine.
You’ve seen your doctor for your annual checkup. Everything seems fine. They draw some blood for routine tests, then a couple of days later your doctor’s nurse calls and says they have some concerns and want to see you in the next few days.
When you arrive and are sitting in the doctor’s office, he comes in with the devastating news. Only one problem. That is rarely how it unfolds. The usual scenario is more along the lines of experiencing a pain that is new and somewhat unusual, or a loss of energy, or a small, but persistent lump.
You think nothing of it, until the pain becomes worse, you’re feeling more fatigued than ever or the lump is getting bigger and multiplying. You finally go in for a checkup and that’s when you get the diagnosis.

In my case, I was being turned down for a life insurance policy.

When that happened, I didn’t get an immediate reason, other than my blood tests were outside of acceptable limits. This was surprising, since I have regular checkups and consistently go to our health club to work out. While I have had some health scares previously, nothing indicated there was any current concern. 

Upon some insistent probing, I learned my PSA was elevated, something that had never been an issue in the past. The confusing part, after some quick research, was that it wasn’t that much out of normal, plus it was being downplayed as any sort of problem.

An interesting journey

This was only the beginning of an interesting journey. Current accepted “wisdom” in the healthcare arena has downplayed the value of PSA tests and prostate exams, for men over a certain age, as “unreliable” indicators of prostate issues. Except, in my case, it was (more on that later) a grave concern.
A quick search of available literature talks about how prostate cancer is common in men over age 60, but it is also not very aggressive and easily treated. Nothing to worry about, right? This simply could not have been more misleading. It turns out:
Prostate cancer  is the second leading cause of cancer death in men.
Prostate Cancer

"We'll Keep an Eye On it"

I could have ignored this as an aging issue. Fortunately, I am married to a Board Certified Patient Advocate (BCPA) and she would not let me leave it at that. I made an appointment with a urologist, who told me not to worry, we’ll keep an eye on it (more on that comment later). My BCPA wouldn’t accept that, so he agreed to do a biopsy, which turns out to be a somewhat superficial procedure.

12 random samples from your prostate that are then biopsied. Nothing! Again, we’ll keep an eye on it. Again, my PA pressed for answers. He agreed to schedule an MRI. The MRI did find a very small area that was “interesting”. They score their findings and I was on the borderline on whether this small cyst was cancerous or not. Again, we’ll keep an eye on it.

"Don't ask questions I can't answer."

By this time we were feeling very frustrated and pushed further. The doctor who did my MRI specialized in surgery for prostate issues relented, then tried to sell us on his skills as a surgeon. We wanted to explore all options for treatment, but could not get any answers from him. He actually said to us, “Don’t ask questions I can’t answer.” Really? Does that sound familiar to anyone?
He finally referred us to a radiation oncologist who took the time to explain everything to us, with his recommendation for a somewhat new procedure of high burst external radiation beam treatment. He referred us to a website so we could compare results of that approach to other procedures. 
I am happy to say that I am now cancer free for over 4 years.
Don't Ask Questions About Cancer Diagnosis
The Reality of Prostate Cancer Diagnoses

The Hard Part

I joined a support group for prostate cancer
I joined a support group for prostate cancer through our local Gilda’s Club, an affiliate of the Cancer Support Community, a non-profit organization that supports anyone effected by cancer with emotional, social and educational support. There were about a half dozen men in my support group, all of whom had been told by their urologist they would “keep an eye on it".
Turns out to be the proverbial famous last words. 

All were now in Stage 4 (advanced) prostate cancer, with the “non-aggressive” cancer having spread to other parts of their body. I shared my experience, then never went back, feeling very guilty about telling everyone about my experience.
We have the best healthcare system in the world, in spite of what some politicians like to tell you. But it is a large, cumbersome system, driven by standard procedures and protocols. It can be very impersonal. But cancer is anything but and you can quickly be left behind and on your own, if you aren’t careful.

What are the lessons?

Become aware of the early signs of cancer. Don’t ignore them.
Do your homework. There are a lot of good informational resources on the internet, and references to plenty of support services, many at no cost.
Follow up with a checkup with your doctor and be prepared with a list of questions. Do not leave until all concerns are addressed in a way that you are able to understand.
Be your own advocate. If you are not comfortable with that role, consider using a patient advocate to assist you.

So, what can you do?

Many people start this journey on their own, not wanting to burden other family or friends. This can lead to serious consequences.
Learn what free services are available, then utilize them.
Create a plan of action.
Do not take no for an answer. Your life depends on it.
Recognize the value of an professional patient advocate. If you are comfortable with being your own advocate, then become informed.
If you are still confused, feeling lost or neglected, consider hiring a Patient Advocate.
Debby Deutsch, BCPA and founder of Patient Care Partners, along with her excellent staff, have years of experience supporting cancer patients on their journey. They help them identify options, developing a plan of action, then implementing those steps.
Today, with early diagnosis and proper treatment, most forms of cancer are treatable. But only if you act. If you need help, contact us.
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