When Prostate Cancer Returns – Between a Rock and a Hard Place with Health Insurance – Part 10

December 2, 2013

Last entry (Part 9) Mayo Clinic fumbles the preverbial ball – but what an awesome recovery!  Now we get the full picture and to be clear the process will be shared since the issue is NOT the Mayo Clinic, but obstinate Health Insurance Companies that seem to think they know more than my doctor.  Arrrgggg!!!

My last entry is here: https://chuckgallagher.wordpress.com/2013/11/27/when-prostate-cancer-returns-ouch-mayo-clinic-fumbles-the-ball-part-9/

NEWS on the MAYO FRONT!

Mayo Clinic LogoToday I get an inpatient email from the Mayo Clinic  that stated the following:

Your PSA is still 1.1–which is a good thing that it’s not moving anywhere quickly. Per Dr. Kwon I have placed orders for a prostate MRI and a return with Dr. Kwon. If you get the C11 PET approved through your insurance, please let me know and I will also order that scan for you.

To which I responded:

Diane (Dr Kwon’s nurse)…thank you for your email. It seems I am stuck between two competing factors – National Imaging Associates and the Mayo Clinic Urology. I cannot get my insurance company BC/BS to approved the C-11 that pre-certification comes through National Imaging Association. They won’t approved without a peer-to-peer discussion. Mayo Urology won’t do a peer-to-peer. PATIENT IS CAUGHT IN THE MIDDLE. Seems that sucks for the Patient (me in this case). Therefore, I respectfully request that someone with clinical knowledge do the peer-to-peer so that the C-11 can be approved. We both know that a pelvic MRI is likely (with a PSA of 1.1) to show nothing just like the CT scan and Bone scan. Happy to have the MRI done, but if that improves the approval of the C-11 scan great…otherwise seems it is a waste of time. National Imaging Association won’t consider a new application for the C-11 – they (according to your pre-certification dept) are only willing to reconsider with a peer-to-peer. I DO UNDERSTAND the time associated with this request. However, if it were you or your husband and there seems to be a stand off taking place that holds the patient (me) from getting what we both know I need, I’m sure you would agree that I have to ask. I am not asking that Dr. Kwon do the peer-to-peer, but do believe that there is someone in urology that is capable of convincing the physicial (likely retired and sitting on his ass with National Imaging Association) with NIA that a C-11 is the only thing that is likely to identify the location of my recurrent Prostate Cancer so that an effective treatment can be administered. I really appreciate your willingness to consider my request and hope that it falls on willing ears. Honestly that would be the best Holiday Gift I could receive – a yes from NIA. Thanks and hope your Thanksgiving was a blessing. Chuck

There is a simple saying – “You’ll always miss 100% of the shots you don’t take!”  In other words you can’t get a “Yes” without asking.  Me…well I am all about asking and more than once!  Sales motto – ask until you get a “Yes” of piss them off trying.  Either way you’ll get the outcome you desire or know that you’ve done your best trying!

Then later today a Mayo Clinic response – BETTER THAN EXPECTED!

Dr. Kwon will do a peer to peer review. Just call our pre-certification office to set it up at XXX-XXX-XXXX.

Oh my…certainly better than expected.  Dr. Kwon is the man when it comes to C-11 Pet Scans…so if anyone can convince National Imaging Associates of the value to me, he is the one that can do that!!!

THANK YOU!  And the process continues!


When Prostate Cancer Returns – Ouch Mayo Clinic Fumbles the ball… Part 9

November 27, 2013

Some posts are simple and don’t require many words.

Mayo Clinic LogoMayo Clinic pre-certification department – 100% satisfaction rating.  Talking about a group that has gone above and beyond the call of duty…these folks certain have.  Hats off to you.

Mayo Clinic Urology dept… well it started at 100% and I can honestly say they are good – real good – but when it comes to patient first or process and time – patient loses if they pay with insurance.

Let me explain.  National Imaging Association denies the C-11 Pet Scan which would be the most likely test to determine the source of my recurrent prostate cancer.  What they require is a Peer-to-Peer consultation with the folks at the Mayo Clinic.

Why?  Likely because this particular Pet scan is so highly specialized that the NIA folks need to be “convinced” (my word) that its useful in my case.  To be fair, Dr. Kwon, through the Mayo pre-certification dept sent extensive material to help them understand.  Do I think the folks at NIA read it – na…not a chance.

But the problem is – Dr. Kwon and the Mayo Urology folks don’t (won’t) do peer-to-peer consultations with insurance companies.  I was told if they did that is all they would do and therefore get no scans done.

Wait a minute…time out.  You’re telling me that you (the Mayo Clinic) can’t hire someone with clinical urology experience to handle the interaction with insurance companies so that patients (like me) don’t get caught in the health insurance circle of death?

Sorry, but it is unacceptable that no one with enough specialized knowledge from Mayo Urology can take the time needed to do the peer-to-peer knowing that this test is “the” test needed to help me get appropriate direction needed for an effective treatment.

One call, but the Mayo Clinic won’t make that… at least that’s what I have been told for two days.  So much for the patient coming first.  Remember I (your patient) didn’t create this screwed up system of health care or payment system.  I just need cooperation so I can move forward to eliminate this disease once and for all.

You sure you won’t make the peer-to-peer call?  Please!


When Prostate Cancer Returns – The Great Health Insurance Run-around! – Part 8

November 27, 2013

I am becoming more firmly convinced that the health care system is so screwed up that recovery is challenging at best.  Wonder if we should call in palliative care for our health care system?

Blue Cross Blue Shield LogoMany of you have been following my journey dealing with recurring Prostate Cancer.  Treatable?  Yes!  Easy?  No!!!

THE GREAT INSURANCE RUN-AROUND!

Yesterday was a red-letter day when it comes to getting the run-around from all sources.  Even the great Mayo Clinic contributed (but we’ll get to that later).  Since this is in two parts – the first part was posted yesterday and can be seen here:  https://chuckgallagher.wordpress.com/2013/11/26/health-insurance-companies-and-the-ethics-of-health-care-you-aint-gonna-believe-this/

In my case since I was denied the test that I need to identify the source of my recurrent prostate cancer, I elected to call Blue Cross – Blue Shield of SC.  Ooops…calling – well that’s not possible.  Rather you have to communicate through their BC/BS website (something I can do, but not sure it’s easy for all customers/patients).  The connection with BC/BS was to appeal their denial.

BC/BS says – Sorry, but National Imaging Association is who issued the pre-approval denial and they would have to be the ones to reconsider.  Fair enough…

So I call National Imaging Association and was told that I was denied because the Mayo Clinic in its submission for approval indicated “Prostate Cancer” but did not provide a “tissue diagnosis”?  Bureaucratic bulls**t.  What tissue is there to diagnose?  My PSA is rising and that has only one practical source – recurrent prostate cancer.

CHINK IN THE MAYO CLINIC ARMOUR

Mayo Clinic LogoFollowing the logical process…I follow up with the Mayo Clinic pre-certification folks and am told that they have done all they can do and that a peer-to-peer might be in order.  Seems reasonable to me.  So I am told to talk to Dr. Kwon’s admin to seek his help.

Moments later I talk to Dr. Kwon’s admin and, well I must have called either on a bad day or too late in the day.

“Why are you calling me?”

“The folks at the Mayo pre-authorization or certification dept told me to call as a peer-to-peer might be in order,” was my response.  They just told me this minutes ago.

“They shouldn’t be doing this.  Dr. Kwon is not going to do a peer-to-peer with an insurance company.  Do you mind if I put you on hold while I resolve this with the pre-authorization dept.  They should have never had you call me.”

On hold…and I’m thinking “well that didn’t go well” – as the patient what message was sent that my doctor who is the champion of this particular procedure would not do a peer-to-peer.  I really do get it…that is time and time is money, but reality is if that is what is required surely there is a solution other than complaining about receiving a re-referral from another department within the Mayo organization.

THE GAME

I’m becoming more and more confident that the insurance company game is played this way:  DENY! – wait and see if the patient or doctor’s office gives up = INSURANCE COMPANY WINS!

Well, I don’t give up that easily either with the insurance company or the Mayo Clinic.

Looks like its back to the phones for me!

YOUR COMMENTS ARE WELCOME!


Health Insurance Companies and the Ethics of Health Care…You Ain’t Gonna Believe This!

November 26, 2013

Some may know – especially those who have been following my most recent blogs related to a return of Prostate Cancer that I’ve been dealing with – but today was a Red Letter day when it comes to Health Insurance, Health Insurance Companies and how they ethically (oops unethically) deal with their customers.  I am not sure how we got here, but where we are when it comes to our health and how that is paid for is so broken it’s quite unbelievable.

WHAT’S THE SCOOP?

healthcareToday was a follow up visit with my local doctor.  Nothing special and almost a waste of time, but the appointment was scheduled and kept.  Routine visit – weight, blood pressure, temperature, and nothing unusual.  Today I was to receive the results of my bone scan and CT scan, but since I got a CD with the data ready to send to the Mayo Clinic (which of course I read – not that I’m a doctor, but I can read, and a report that says nothing was found was exactly what I was expecting), which I sent, I knew the outcome before the visit.

Doctor enters the room with a pleasant smile asking me how I am.  Now that was a loaded question since I am full of frustration over the way Health Insurance companies deal with their customers (namely me).  Of course since I am the one that wants treatment, I personalize their actions.  Yes, I know better, but to me it is personal since it is my health.  So…I proceed to vent to the doctor.

“Doc, I don’t know how you deal with these insurance companies day in and day out!  They are a pain in the ass.”

“You don’t know the half of it,” he responded, “and it’s only getting worse!”

For a few minutes he openly allowed me to vent, then looked at me, removing his glasses and said, “Let me vent a bit.”

AMAZING STORY!

Of course with no identifying information shared, my doctor shared with me the most amazing story I’ve heard (and I suspect that this is nothing in comparison to many many more stories like this out there).

“So I have a patient with advanced lung cancer.  He’s been a smoker most of his life, so as you can imagine his lungs are pretty damaged.  Likewise, he has cancerous lymph nodes in his chest.  So I suggested a form of radiation treatment that is more localized to his tumor so that I can spare what little lung he has left.  If I use traditional radiation the tissue damage will create substantial problems for this man who needs to salvage as much of his lung as possible.

I submitted my request to his health insurance company.  Their reply:  DENIED.  They wanted me to use the conventional treatment!

I told the person on the phone, because by now I was personally involved, that if it were their lung or even their father in a similar situation, they would want the better treatment.  The treatment that would salvage what lung he has left.

They then suggested that I resubmit the request showing the two treatments: (1) more effective treatment and (2) conventional tissue destroying treatment.  We did that.

Got the response today:  DENIED!

I was incensed and called again for a peer to peer discussion.  Not more than 30 minutes ago I was told that the conventional treatment was all that was needed, even though I know that the damage from that will substantially diminish his quality of life and could create more medical costs down the road.

Chuck, they just don’t care!”

HOW DID WE GET HERE?

How did we get to the point that a person checking off a checklist is the determining factor into the kind of health care we receive in the United States of American?  Are we really OK with care provided at the lowest common denominator?  We we can receive quality treatment but the insurance company will only pay for adequate treatment, is that OK?

SHARE YOUR STORY

You don’t have to name names, but feel free to share your story.  Maybe if enough of us get our stories told…SOMEONE WILL LISTEN.

FEEL FREE TO SHARE YOUR STORY OR YOUR COMMENTS.


When Prostate Cancer Returns – The Insurance Company Two-Step – Part 7

November 22, 2013

Getting a straight answer from an insurance company – well that is like asking the Government to simply explain the Tax Code or the Affordable Care Act – it’s impossible!  And impossible leads to frustration.  The saga continues…

Health InsuranceFor those who have been following – I am on one had a prostate cancer survivor – on the other, it appears that prostate cancer has reared its ugly head again and my challenge is getting the treatment that I want with the blessing of my health insurance company.  Now mind you, the treatment I want is FDA approved and offered at the Mayo Clinic in Rocherster, MN.  So the question should be – why is this so hard?

APPROVAL VS APPEAL

The process should be simple!  Doctors says “You need this.”  You get it done and the health insurance company pays.  Simple right?  Not so fast.  It appears that the health insurance companies distrust the doctors so in order for the health insurance company to pay one must get preapproval.  As I asked in my last entry – “Who made Health Insurance Companies God?”

OK…I’ll play by the rules.  So, in my case, in contact with the Mayo Clinic, the request was sent for the one thing that can isolate where my prostate cancer growth is originating and thereby help me have an effective treatment – a C-11 Pet Scan.  Thanks to the folks at the Mayo Clinic who have to put up with this never ending bull shit.

Answer back – DENIED!

What next?  Well the C-11 Pet Scan – so says National Imaging which does the pre-approval screening for Blue Cross/Blue Shield of SC – was not medically necessary.  What?

They approved a bone scan and CT scan which was destined to show nothing, but the one scan that can show where the new cancer is embedded is denied.  I don’t know about you, but that’s the damn dumbest thing I’ve ever heard.  But there has to be a solution.

NEXT STEPS

Nothing being one to give up (which is likely what the insurance company would like me to do), I went on the BC/BS website to seek information on how I could appeal their decision.  Guess what…nothing there that answers that question.  Amazing?  Na…they don’t want people to appeal.  Rather, my guess is they would rather us (the patient) just take their finding as God and quit.

Not a chance!

Web based connection to BC/BS and the question is raised about appealing the decision.

Instant email in return indicating that I would get a call within 1 to 3 business days.

Sure enough I got the call.  Pleasant lady on the other end tells me that I can’t appeal since I had not submitted a claim for service.  Duh!!!  Of course I didn’t.  I didn’t get that far.  I tell the nice lady that the preapproval process is where the failure occurred and that is what I need to appeal.

“Oh,” she responds, “well you’ll have to take that up with National Imaging, we can’t help you.”

“How might I go about doing that,” I asked.

“Oh…your doctor will have to talk with them.  They don’t deal with patients.”

Let me get this – BC/BS can’t talk with me since I tried to follow the rules and National Imaging can’t talk with me because I’m not a doctor.  I am sure that those who follow understand how this is crazy making for a consumer just wanting to get appropriate treatment.

WHERE FROM HERE?

Not being a person to give up…looks like on Monday I’ll be calling the Mayo Clinic and see if they can help by giving National Imaging more of the information they need to get the test approved.

Sad, but this should not be such a stressful process.

YOUR COMMENTS ARE WELCOME


When Prostate Cancer Returns – Who made the Health Insurance Companies God? – Part 6

November 10, 2013

I am angry!  Just how did we get here?  WHO MADE THE HEALTH INSURANCE COMPANIES GOD?

Blue Cross Blue Shield LogoThere is one test offered at one place – FDA approved – that could help drive an effective treatment for my recurrent prostate cancer and, no surprise, the insurance company said – NO!  This is not an experimental test, it’s offered at the prestigious Mayo Clinic – and yet, the insurance company believes it’s not valuable.  WHAT?  One test that has the potential of focusing treatment to cure a problem and minimize costly side effects and somehow BC/BS of South Carolina thinks it’s not WORTH IT.  Who made these people GOD?

BACKGROUND

For those who have been following this series, you by now know that I have a recurrence of prostate cancer.  Where, well, that’s the question.  Again, fortunately it was caught early as evidenced by a slowly rising PSA.  Early is great, but that doesn’t minimize the importance of selecting the best treatment to eradicate the cancer and preserve quality of life.  I don’t care to die early from prostate cancer and equally, I desire to have a normal quality of life not hampered by too aggressive a treatment.  Both desires seem to me to be reasonable!

Enter the insurance company – in this case Blue Cross/Blue Shield of South Carolina.  At one level I am confident that they are doing their job as they see it.  But are they acting ethically?  Again, from their perspective my guess is they would say – Yes.  But is their perspective of profitability the perspective that yields the best results?  Perhaps that “rabbit trail” of an ethics discussion should be best saved for later.  For now, who made them God when it comes to my health?

THE JOURNEY GETS COMPLICATED

CT scan completed!  Bone scan completed!  Both – as expected – showed nothing.  To be clear both tests were a waste of time and BC/BS money, but they were “required” in order to get the one thing I need – a Choline C-11 Pet Scan from the Mayo clinic done.  As a point of reference, the CT or Bone scan won’t detect prostate cancer until it’s fairly well progressed.  Mine is recurrent cancer and as evidenced by my PSA of 1.1 it is not well progressed – YEA – so those scans are worthless (but a prerequisite to the C-11 scan).

Scans done, so now I work with the Mayo Clinic to gain insurance company “pre-approval”.  Yuck.  First who says what should happen to my body – the insurance company of my doctor?  Apparently, it’s a mind numbing insurance company that is more concerned with their financial outlay than my health.   However, I have no choice but to play the game.  The folks at the Mayo Clinic are great, but when I tell them my insurance company is BC/BS of SC, they respond with a dull, “Oh”.  They then proceed to tell me that “Southern” insurance companies are tough to deal with, but they will do their best.

Days later, I get a call from Rochester, MN – home of the Mayo Clinic – the gentleman on the other line shares as kindly as he can, that “National Imaging” the folks BC/BS of South Carolina use to pre-approve imaging services has DENIED my scan – saying that PET scans don’t work.

PET scans don’t work.  Well, perhaps that’s true for the average ordinary PET scan.  But this is a highly specialized PET scan that is incredible at detecting recurrent prostate cancer in the very early stages.  BINGO – just what I need.  But some numb nuts at National Imagining likely has never heard of a Choline C-11 PET scan and just give me, what I’m sure tens of thousands have heard – a big resounding NO!

IT’S MY LIFE AND HEALTH and WHO CONTROLS IT?

The Insurance Company – plain and simple!  It’s wrong and evidence of a system broken!

An example – remove the emotion I feel from this discussion – let’s look at a different situation.

I went to the BC/BS store front in Greenville, SC to inquire about insurance effective January 1, 2014 since my current coverage will expire.  (Nothing like facing a medical challenge knowing that in less than two months you won’t have coverage).  So I ask for the Platinum plan.  “We don’t offer that,” I was told by the BC/BS agent.  “Ok, then quote me the Gold plan,” I responded.

The Gold Plan price was calculated with a brief explanation.  Then I asked the following question:  “Let’s say I had a brain tumor and the best treatment was at MD Anderson in Houston, TX.  How much would my insurance pay toward my treatment?”

“Nothing!  They are not in our network.”

At this point my mind is racing for my next question.  “So let me get this, the only thing my insurance would cover is treatment by Dr. Bumfuck here in SC (no offense to SC physicians, but MD Anderson vs SC – I’d take Anderson!) otherwise 100% is out of pocket?”

“Yes, that’s right.  And, we just added the Greenville Hospital System.  Slowly we’re adding more to the network.” (at the time of our meeting only one hospital system was in the network, thereby meaning that if my local doctor was affiliated with the one not in the network, I would be forced to change doctors or pay out of pocket)

“Wow,” I responded, “so under this new plan I’m stuck with who you select for my medical care or I have nothing?”

“That’s right!”

THE BEGINNING IS THE END

Who made the Insurance Companies God?

YOUR COMMENTS ARE WELCOME

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

https://chuckgallagher.wordpress.com/2013/10/20/when-prostate-cancer-returns-mayo-clinics-choline-c-11-pet-scan-part-4/

https://chuckgallagher.wordpress.com/2013/10/30/when-prostate-cancer-returns-the-mayo-clinic-process-continues/


When Prostate Cancer Returns – The Mayo Clinic Process Continues – Part 5

October 30, 2013

Not only is it disconcerting to find out that you have recurring prostate cancer, but then to have to deal with restrictive insurance companies and find out that it will only get worse, just adds icing to the cake of worry and stress.  The bright spot – dealing with the Mayo Clinic.

Health Care 2So here’s the deal.  You find you have a rising PSA when, without a prostate, your PSA should be zero.  Problem!

You then find that there is a wonderful test that potentially could identify where the growing prostate cancer is located so that appropriate treatment could take place.  Get the test!  Right?  Not so fast…

In the Mayo Clinic consult I find that in order for insurance to cover the test, they require other tests – CAT scan and Bone Scan – be done so that (my words – less expensive diagnostic tests) one can find out if there is a “cheaper” way to determine where the problem is.  At a simple level that makes some since, but reality and bureaucracy don’t often mix.

Starting cheap and controlling costs is the insurance company’s way of creating profit.  But at what cost?  My health?

Reality is – the only test that has a chance of detecting where my recurring prostate cancer is originating is the Cholene C-11 Pet Scan.  With a low level PSA (1.1) the chance a CAT Scan or Bone Scan will show anything is slim to none.  Ah, hell…None!  So…the ONLY option is the C-11 Pet Scan.  Now doesn’t it make sense that someone with some fundamental intelligence would look at the facts and circumstances and just order the C-11 Pet Scan from the get go?

The insurance approach has done nothing but waste money.  Start cheap and then (potentially) approve the one test that would work.  Arrrrg!

INSURANCE SOAP BOX TIME

But it gets worse – and yes now I am on my soap box.

So…knowing my insurance will change at the end of December 2013, I go to Blue Cross Blue Shield of SC to inquire about the “gold” plan for South Carolina residents for 2014.  What a eye opener.  First, they calculate the monthly cost which is high, but in this day and age that is expected.  So far no surprises.

Then I ask – what is covered and for how much?  That’s when it starts to get interesting.  I am told the deductibles and out of pocket expenses.  When it’s all said and done I’d be out of pocket $4,200 plus the monthly cost.  OK…not bad.  But wait there’s more.

So I ask, where are these insurance benefits available?  “You mean who can provide them,” asked the Blue Cross representative.  “Yes.”  Now dumb me, I figure that if you have the “Gold Plan” you should be able to get benefits anywhere.  WRONG!

I’m told that coverage is only available through providers in the network.  STOP!  Really?  Then the BC/BS representative said we’ve just added the Greenville, SC Hospital System.  I used to just be St. Francis.

I was blown away.  You mean to tell me that if I don’t choose a provider in your network, I have to pay for services out of pocket?  The response from BS/BS – YES!

Pardon the way I put this, but WTF?

I proceeded to ask, “So if I had a brain tumor and the #1 brain surgeon was at MD Anderson and they are not in the SC BC/BS network, I would either have to choose Dr. Nimrod or pay out of pocket for the best care?”  “Yes, that’s correct!”

OMG…if that’s what we have to look forward to with the Affordable Care Act then God help us.

BACK TO A MORE COMFORTABLE REALITY

Thank God for people that know how to navigate this mess.  Back to simplicity.  I email through the Mayo Clinic system to find out next steps and was provided the phone number for those (blessed) folks who get pre-approval for people like me who need the help and are pissed with insurance companies (who made them the decision makes for my health?).  I simply called the Mayo Clinic – got a lovely lady on the phone who was interested in helping me.  She listened to my story, found the CPT code, got my insurance information and is proceeding today to be my advocate with my current insurance provider.

The C-11 Pet scan is scheduled and the journey continues to health…


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 – Researching Treatments for a Rising PSA – Part 3

October 19, 2013

Well one thing is for sure I don’t want same ole same ole as my treatment for a recurrence of prostate cancer.  Truth be know I don’t want to have prostate cancer rear its ugly head again.  To me once is enough, but apparently there is something more to be learned.

I guess for those that know me, I tend to look beyond the obvious to see what, at a deeper level, there is to what is happening in my life.  So, there must be a reason or a lesson.  After all everything happens for a reason, it’s just up to me and God to help bring the unknown to light.

Mayo Clinic LogoMany would say that there is an emotional issue first that manifests in physical disease.  If that is true, then I apparently have not dealt with the emotional since I am now facing prostate cancer’s return.  Whatever the greater picture the one thing I will deal with is the here and now.  So where from here?

WHAT’S NORMAL?

When prostate cancer returns apparently, as I seem to be told now by a few docs, I am a candidate for “salvage” treatment.  What is normal is radiation in the prostate bed area.  Beyond that, I could take hormone therapy, effectively chemically castrating me (depriving my body of testosterone – a hormone that feeds prostate cancer).  Hum…neither of those appeal to me.  Surely there is a more scientific approach.

Radiation to the prostate bed creates all sorts of potential complications or side effects including erectile dysfunction and urinary symptoms such as frequency, bleeding, or, rarely, incontinence.  Having experienced both as side effects from surgery, I don’t particularly want to experience them again.  In fact, both (especially erectile dysfunction) scare me.

If a man first concludes that prostate cancer is not going to take his life (at least anytime soon) then the issue of quality of life arises.  For a man quality of life is made up (at least a good part of it) in his sexual function.  If a man were to tell you the truth, they would say that they think of sex often and the inability to have sex or be functionally sexual is one of their greatest fears.  Not only is this true for me, but having interviewed over 125 men who have had different types of prostate cancer treatments, most all have said that sexual function was one of their foremost concerns when dealing with treatment options.

Here’s my most popular blog by far on that very subject: https://chuckgallagher.wordpress.com/2008/02/23/sex-after-prostate-cancer-surgery-what-can-you-expect-comments-by-motivational-speaker-and-cancer-survivor-chuck-gallagher/

IS THERE A BETTER WAY?

With the advent of highly specialized ways to do most anything, surely there is a way to find the source of the prostate cancer and deal with it once and for all?  Seems a logical question and one that I was focused on finding an answer to.  It just didn’t seem right that the best that could be done was a massive blast of radiation in a general area.  That’s like going deer hunting with a shotgun and hoping that you’ll be successful (by the way I don’t hunt).

After several google searches I came across something that seemed promising.  Here’s a reprint from the Mayo Clinic website that just might be an answer for me.  The link is here:  https://www.mayoclinic.org/choline-c-11-pet-scan/

Choline C-11 PET scan is an imaging test used to help detect sites of prostate cancer that have returned despite treatment (recurrent prostate cancer). It may be used when other imaging has not been helpful. Choline C-11 PET scan is a positron emission tomography (PET) scan that uses a special chemical tracer called Choline C-11 Injection. At Mayo Clinic, a low-dose computerized tomography (CT) scan is done at the same time to help further show internal anatomy.

Choline C-11 PET scan may help doctors detect possible sites of recurrent prostate cancer that more conventional imaging tests can’t identify. Locating recurrent prostate cancer sooner may allow your doctor to identify small, isolated deposits of cancer — both inside and outside your prostate — that can be targeted for more-effective treatment.

Choline C-11 PET scan uses a radioactive form of the vitamin choline. A small amount of the tracer is injected into a vein in your arm just before the scan is done. Prostate cancer cells in your body readily absorb the tracer. This can help doctors detect areas of prostate cancer cells throughout your body. A biopsy to remove some cells for lab testing is then done to confirm the presence of recurrent prostate cancer.

Accepting that I’m no doctor…I may be missing something, but it would appear that I am finding something here that (at a minimum) could help identify where specifically the cancer is and therefore make a more effective target for treatment (likely some form of radiation).  Now some hope.  Perhaps I am a candidate and for sure I will be certain to ask for this test.  Focus.  That’s what I need to feel that I am at least taking some control over this new phase of my life’s health.

More from the Mayo web site: 

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.

You can bet I’ll be calling to schedule an appointment!

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/


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/

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