When Prostate Cancer Returns – Mayo Clinic’s Choline C-11 PET Scan – Part 4

October 20, 2013

“Your prostate cancer is back.”  As any man can imagine, those were words that I didn’t want to hear.  Thought I was over this phase of my life…apparently not.  But I have two choices, dwell on how I feel or find a solution.

Mayo Clinic LogoAs the journey continues it appears that for recurring prostate cancer there are few tests (well only one that I’ve found) that can shed light on where the cancer might be in my body.  That test is the Chloine C-11 PET scan done at the Mayo Clinic in Rochester, MN.

Here are comments from the Mayo Clinic website:

  • Helps detect recurrent prostate cancer sooner. Choline C-11 PET scan can help doctors detect recurrent prostate cancer before it may be detected by more conventional imaging tests. In men with rising prostate-specific antigen (PSA) levels, this test may help detect sites of possible recurrent prostate cancer at PSA levels as low as 2 nanograms per milliliter (ng/mL). Conventional tests may not detect a recurrence until PSA levels are between 20 and 30 ng/mL.
  • FDA-approved Choline C-11 PET scan site. Mayo Clinic in Rochester, Minn., is the first, and currently the only, medical center in North America to receive approval by the Food and Drug Administration (FDA) to prepare and administer the Choline C-11 PET scan imaging agent (Choline C-11 Injection). Mayo Clinic in Rochester, Minn., is currently the only site in the United States using the FDA-approved imaging agent.
  • Helps identify areas of recurrent prostate cancer after all forms of treatment. Previous treatment may leave scar tissue that can be confused with active cancer when viewed using conventional imaging. Choline C-11 PET scan can help doctors distinguish between scar tissue, inactive cancer cells and active, recurrent prostate cancer.

THE PROCESS

Not being a person to delay action, I went to the Mayo Clinic site and requested the test.  Of course, it was not quite as easy as that.  I was informed that I would be approved for a consult and an appointment was scheduled.

Wow…that was easy.

Then it hit me, wonder if my insurance would pay for my treatment choice.  My wife, the person in my life that thinks more analytically than I, suggested that I call my insurance provider to see if preapproval was necessary.  Now I have to be honest, I really have a hard time with insurance.  When did big insurance companies become the dictators of one’s health?  Arrrg.

THE APPOINTMENT

Not sure what I expected, but the Mayo Clinic was far nicer that my wildest imagination.  Johns Hopkins provided great service, but the place was kind of a dump – especially compared to the Mayo facilities.  But pretty wasn’t what I was there for.

I met with Dr. Eugene Kwon and quickly found a kindred spirit.  He was articulate and focused on, what I would call, the right kind of patient care.  He made the comment that all too often Doctors, with recurrent prostate cancer, were concerned with palliative care for the patient vs. cancer elimination.  In fact, he seemed to believe that we need to do better with initial treatment options.  Either way, after our interview Dr. Kwon laid out a specific course of action that would lead me to gaining what I desired – a Choline C-11 PET scan.  But there were some pre-conditions.

1.  I would need to have a CAT scan.

2.  I would need to have a bone scan.

Now, to me, that made no sense.  But, as Dr. Kwon explained, in order for the insurance company to approve the Choline C-11 PET scan, I would have to fail both a CAT and bone scan.   While I’m not sure the costs, it appears that these are prerequisites to insurance approval for the scan that would make a difference.  Such a game and one that makes no practical sense.  Doesn’t it just make more sense for reason to rule when making decisions like this?  Seems that the insurance companies set the rules and doctors have to play by them.  What a waste of time, energy and money.

As I left the Mayo Clinic I have to admit I was impressed with the efficiency of their operation.  On the spot a PSA test was ordered and within 1 hour it was completed.  I was told that I could sign in to the Mayo Clinic website and create my own account so that we could use that as a portal for results and communication.  OK…that’s different.  And by the time I flew home and logged in (the next day) I had my PSA results.  Amazing!

NOW THE TESTS

I have to admit it’s a bit funny…both the CAT scan and bone scan are painless so why the anxiety.  It’s the freaking needle!  Yes, I am such a baby when it comes to being stuck.  So here I am at the imaging center and what I fear is a simple injection so that the scans can be done.  Oh well…it appears that I may as well prepare for the fact that being stuck is going to be an active part of life moving forward whether I like it or not.

So…I tell the nurse that I request a “baby” needle.  She looks at me kinda funny and says, “Really?”

“Yes, really!  Or perhaps you want me flopping around on the floor.”  I’ve come to understand that if I want baby treatment I will exaggerate my fear of needles so that they take me seriously.  Why not?  Seems that any babying I can get is better than just being treated as a piece of meat.  And then as they prepare my arm I hear, “Good veins!”  My I hate to hear those words as I know being stuck is the next thing that follows.

“Now drink this.”  Before the CAT scan I had to drink what seemed to be a quart (but more likely a pint) of some nasty liquid flavored with vanilla.  Now that’s a way to turn someone off of vanilla.  But drink it I did and within an hour or so, I was in for the CAT scan.  The scan – well that was easy – just lay down and the machine does the rest.

“The scan is done, Mr. Gallagher.  You’re free to leave.  Come back at one for your bone scan.”  And with those words I gladly left the imagining center for some nourishment.

MIND GAMES

The tests weren’t what was bothering me.  Rather, it was the thought that here I am at 56 and facing again those dread two words, prostate cancer.  Somehow I felt, having defeated prostate cancer once (or at least I thought I had), that I would have a long life ahead.  Now there were doubts.  Not that dying is a great fear (well I guess for us all it is at one level), but more than that it is not finishing what I came into this life to accomplish.  For the current moment, it seems that I dwell more of the value of the moment rather than taking them for granted.  Actually I wonder at times if I have done OK.  God knows that I’ve made mistakes, but I’d like to think that when I am gone – the world will be a better place.  Then I think about my life to date and wonder if it truly is.

Mostly I think of my two sons and hope that I’ve been a good enough father.  Being reared without a father, I have had little to go on as an example.  I love my sons.  Perhaps it’s time to show that more than I do.  Either way, it is becoming painfully clear that life doesn’t last forever and we all have a mortality…so what ever I can do I need to do it now.

FINAL TEST FOR TODAY

“Mr. Gallagher, step back here for your scan.”

Soft music was playing and in no time I found that I was awakening myself with a resilient snore.  Seems I had drifted off during the bone scan.

“We done here.  Hope you had a nice rest.”  And with those words this part of the journey was complete.

https://chuckgallagher.wordpress.com/2013/10/18/when-prostate-cancer-returns-one-mans-chronicle-psa-rising-part-1/

https://chuckgallagher.wordpress.com/2013/10/19/when-prostate-cancer-returns-one-mans-chronicle-where-from-here-part-2/

https://chuckgallagher.wordpress.com/2013/10/19/when-prostate-cancer-returns-researching-treatments-for-a-rising-psa-part-3/


When Prostate Cancer Returns – One Man’s Chronicle – Where from Here? Part 2

October 19, 2013

When you’ve lived for eight years seemingly cancer free and then have the rude awakening that – it’s back – I admit it does cause some serious questions to arise.  It seems that we all (well that’s not fair cause I don’t know what others think or feel – so I’ll speak for myself) live daily as if we’ll live forever.  We can look toward the future and plan for eventualities, but do we really ever normally think that life is far too short and precious not to be taking full Chuck Gallagheradvantage of the most of today?  Having my awareness changed by the recognition that I am not cancer free is creating an on going inner dialogue – a dialogue that I will share as this chronicle continues.

BUT WHERE FROM HERE?

Men are from Mars and Women are from Venus – the title of a popular book.  Guess I’ve first focused on the martian route – a solution.

Wonder if my original doctor from Johns Hopkins would be willing to talk to me?

Turns out he was – now at the University of Florida heading up their robotic surgery program, I flew to Jacksonville and drove to the University so we could meet and talk about two things: (1) a book that I am writing on Prostate Cancer (from the layman’s perspective) and (2) thoughts about my current situation.  One thing I’ve learned is to gather information and explore before making a hasty decision.  Your health, my health, is important and not to be taken lightly.  Honestly, in most prostate cancers, the progression is slow…so there is no need for a rushed treatment decision.

MEETING WITH MY SURGEON

Nervous?  Yea a little bit.  Dealing with the unknown isn’t easy – that’s why before the meeting with Dr. Li Ming-Su I did my homework.  Amazing the depth of information that is available on the internet.

Great seeing Dr. Su and after some initial catch up he asked, “So, how are you these days?”

I would  loved to have said great…but I had to be honest.  “I feel great, but my PSA is rising and that concerns me!”

From that simple beginning I shared with my friend the progression – ever so slowly – of my rising PSA.  While he talked openly about probabilities the bottom line came down to this.  I had recurrent prostate cancer and that was nothing to be taken lightly.  The growth had been slow, which to him, was a positive sign.  Yet any growth in something that there should be no growth in was enough to set off alarms.

“Do I need to rush to deal with this?”

“No, but do you have a urologist?”

“No.”

“Allow me to recommend one.”

As you can imagine I was delighted to get a recommendation from someone I trusted with my life when prostate cancer was first detected.

I can’t quote him as this part is shared more in general terms rather than specific comments, but when prostate cancer returns after surgery then one becomes a candidate for salvage treatment when, for the most part, is radiation and/or hormone therapy.  Neither of which I wanted – especially hormone therapy.  But it was now time to come to grips with the harsh reality of being told yet once again that I had prostate cancer.

NEXT STEPS

Occupying my mind with next steps was far easier than dealing with the emotions that kept creeping into my being.  Optimistic?  Yes!  Yet at 56 it doesn’t yet seem to make sense to connect with one’s mortality.  It seems far more normal to believe that life will go on for 30 more years and that I have “plenty” of time to do what I came here to do.  Yet, with a second diagnosis of a disease that can prove to be fatal it is clear to me that I need to re-evaluate my priorities and choices.

I guess when we are young we think that we will live forever.  As we age we know that is not true.  But, damn it, it seems that we shouldn’t be spending too much time thinking of life or the lack thereof till we are 70 or older.  Now I am wondering if I’ll make it to the age when I can draw social security.  Not that that is important, but I’ve paid into it so it seems that getting back is an entitlement.  (And I can’t even believe I used that word!)

For now…the question is what am I willing to do to preserve life in a manner that I wish to live it?  As I write those words it strikes me that “in a manner I wish to live it” is important for me – at least at this point.  Perhaps faced with no life I’d consider making different choices, but at this moment the NEXT STEPS will be a journey of discovery – both inward and outward.

https://chuckgallagher.wordpress.com/2013/10/18/when-prostate-cancer-returns-one-mans-chronicle-psa-rising-part-1/

YOUR COMMENTS ARE WELCOME


When Prostate Cancer Returns – One Man’s Chronicle – PSA Rising – Part 1

October 18, 2013

“Denied!”

That’s what the paper I received in the mail said related to a recent application for life insurance.

Prostate Cancer PinAmazed.  I was honestly confused.  I had never been denied life insurance and to be denied for the small amount I was applying for seemed crazy.  So, of course, the first thing I did was rather indignantly call my insurance advisor and ask what the heck was wrong.  I didn’t expect his response.

“Well Chuck, they told me that the probability of you living another 20 years was slim…therefore they denied it.  After all your PSA is rising.”

All I could do was shake my head.  “I understand,” was the best I could mutter back as I was reeling in disbelief at the words I was hearing.  How did I not know my PSA was rising and what did that mean.  The probability I would not live another 20 years was mind blowing…after all I’m only 56.

As I ended the call the only thing I could think of was getting my medical records – surely something was wrong!

A BRIEF HISTORY

In November of 2004 (when I was 47) I was diagnosed with Prostate Cancer.  I had no symptoms, in fact I thought I was healthy as a horse.  But a fateful trip to the doctor’s office yielding a simple blood test started the cascade of events leading to a diagnosis of Prostate Cancer.  Never in my wildest dreams did I suspect that I would ever be diagnosed with cancer – especially at that young age.

Of course my local urologist wanted to schedule immediate surgery.  Not a chance!  I believe that a patient needs to take responsibility for his or her own health and giving that power to anyone – including a doctor with good intension – is crazy.   Some may disagree…but my body my choice.

So…I carefully studied my options and with careful consideration I elected to have robotic surgery at Johns Hopkins – top rated for male urology.  I don’t regret that decision.

For those reading – as a point of reference – my PSA at diagnosis was 4.58 and my Gleason Score was 6.  The cancer – so said the surgeon and pathologist – was confined to the prostate.  Good news immediately after surgery.  I should be cancer free for the rest of my life.  That was my mindset and has been till I got the life insurance rejection call.

BACK TO TODAY

Guess I need to follow my own advice – take control of my health care.

Step One – get my PSA tested and get my medical records from 2005 forward.  Sounds simple enough – not!  Getting my current PSA – not a big problem.  Call my local internist, schedule the lab work and wait on the results.  Likewise, getting my current records from my local doc since 2009 – piece of cake.  Getting records from my prior doc from 2005 through 2008 – different story.

Calling to my former Texas doctor was a bit unnerving.  “Are you a physician calling for a patient’s records,” the person I was connected with asked.

“No, I am the patient.”

“I see well that will take some time and there is a charge.”

“Let me get this straight, if I were a doctor requesting records there would be no charge and it would be quicker, but since you are sending them directly to the patient, it costs and takes longer?”

“That’s correct.”

My response – “Well that just messed up!  Send them anyway as I want to see them and evaluate them myself.”

Without going into too much detail…I was amazed that getting something as simple as medical records was such an ordeal.  Seems that sending a patient his or her records should just be a right without charge.  Oh well…guess not.

PSA RESULTS

From 2005 through 2008 my PSA was undetectable.  Good sign.  (2009 PSA  .197)  (2010  PSA .340)  (2011 PSA  .478)  (2012  PSA .780)  (2013 May PSA .810)  So…looking at the results – I understand why the insurance company made the decision they did.  Rising PSA when you don’t have a prostate means that it was not confined to the prostate and the cancer has returned.  And that sucks!!!

Let me be clear…it would appear that I am not riddled with cancer, but a rising PSA is a clear indication that there is remaining Prostate Cancer in my body.

WHY THIS CHRONICLE?

I believe in transparency.  I believe, also, that I am here to help others.  Women are far more open to talking about their experiences than men.  So perhaps if I take the time to share the reality of my experience with prostate cancer it will open the doors for others to learn and share…and also perhaps being open gives me an opportunity to record the experience so my children can have a greater insight into their dad and his journey.  Either way, whether it helps me or helps others – I am committed to the journal.

YOUR COMMENTS ARE WELCOME – MORE TO FOLLOW!

https://chuckgallagher.wordpress.com/2013/10/19/when-prostate-cancer-returns-one-mans-chronicle-where-from-here-part-2/