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 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/

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/


Sex after Prostate Cancer – is there hope for a normal life?

April 29, 2010

I’ll never forget the day when my primary care physician said, “You’re PSA a bit high.  I’m sending you to a Urologist.”  My first question – “What’s a PSA?”  Needless to say, I quickly learned.  In the two weeks following I found that my trips to the Urologist brought the news that no man wants to hear.  “You’ve got Prostate Cancer.”

Cancer – that’s a word that no one wants to hear about themselves or those they love.  Yet, like over 200,000 men each year in the US I was faced with the issue of treatment choices and the consequences that followed.  My diagnosis age – 47.  My treatment age 48.  My age today…soon to be 53.  My motive for writing this blog…to offer practical information and hope.

Beyond surviving prostate cancer – which detected early – is quite survivable, the main question that I hear from men – either after diagnosis or soon after treatment – relates to the return of sexual function.  Frankly, that question is often a matter of concern to their partner as well.  Since I have been open and quite transparent about my experiences, I often get calls from partners and prostate cancer survivors asking for help in know what to expect and when.  And, frankly, in just about every case I’ll pose a few questions and now, I’ve come to expect, a routine set of predictable answers.  So, I’m taking the time to deviate from my normal blog entries to address some practical answers to questions related to sex following prostate cancer – is there hope for a normal life.

So we don’t rehash old news I am providing links to prior posts that are still relevant today.

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/

https://chuckgallagher.wordpress.com/2008/10/04/sex-following-prostate-cancer-the-real-truth-from-a-prostate-cancer-survivor/

LET’S BE PRACTICAL…

First, I’m not a doctor, so please understand that my approach here is to help from a layman’s perspective and one who has personally been through want many are experiencing and/or asking today.

Assuming we are NOT dealing with advanced prostate cancer, the likelihood of survival is good and the treatment options aren’t bad.  I elected to use the DaVinci Surgical Method and am very pleased with the results.  But, immediately following surgery and for sometime thereafter I have to admit (as you can read in the blog entries above) I was less that pleased with my sexual function – or lack thereof.  So let’s look at what is realistic first.

Think of your prostate as a small balloon and the nerves that allow for an erection to take place as silly string that has been squirted on the balloon.  Get that picture in your mind clearly and then (I’ll use my case) understand that for 47 years (in my case) my body has had that little balloon inflated inside of me with the nerves (silly strong) laying on top of the balloon for all that time.  That (to our bodies) is normal.

OOPS…then someone comes along and says “You’ve got cancer.” In other words the air inside your balloon is defective and needs to be removed – after all you don’t need it anyway.  Then…the surgeon (assuming that’s the treatment route you take – but my example is not limited to that treatment) pops the balloon (removes the air) and all that is left is a thin shell of what the balloon used to be.  In effect, that’s what’s left of your prostate following surgery (assuming the use of the nerve sparing technique).  Ah…and those (formerly comfortable nerves) and now completely disturbed – crushed if you will – on the shell of the balloon that for so long was nicely inflated.

Put yourself in the nerves place…  For 47 years they existed in the comfort of your body doing just what they were supposed to do – provide a signal that allowed for an erection.  Then…one day, their world changes and no longer are they comfortable.  Their world has been substantially destroyed and, frankly, they don’t know what to do.  For those who find this too simplistic…sorry, the example here is practical, understandable and it works.  Anything that is changed that much fails to function normally.  It’s no different that if you experienced the loss of your home in a hurricane.  Life dramatically changed and you can’t go back to your old routines with any ease.  That, my friends, is where your body is following prostate cancer treatment.

SO WHERE FROM HERE…?

Now, let me be quite candid, I’m speaking to men and their partners from here forward in an honest and forthright way.  The remainder is an adult conversation so understand that as you read.  If you do not wish to talk about sexual function in a direct way…STOP READING.  Go do something else, this blog is not for you.  Otherwise, I will hold nothing back and do my best to provide honest practical advice that can help the reader in the long run.

MEN…it’s time for rehabilitation.  Before  you or your partner laugh, ask yourself this question.  If you had a knee replaced or a hip replaced, after the surgery would you participate in extensive rehabilitation or would you sit on the couch and assume that with time it would just get better?  I can’t speak for all folks, but those that I know who have had either – hip or knee replacement have said that rehabilitation (no matter how initially uncomfortable) was worth it in the end.  Why?  They regained primary function of their legs, etc. if they relearned how to use their body following the trauma of surgery.

Guys…the same is true with your nerves and penis.  STOP…THINK ABOUT IT… You must take the time and put forth the effort to relearn to use your dramatically disturbed nerves and relearn how to regain sexual function.  It isn’t easy, but it can be done…I’m living proof.

STEP ONE:

I recall a physician at Johns Hopkins sitting with me and having a frank conversation regarding sexual function following prostate cancer surgery.  He stated (and this isn’t verbatim) the following:

  • Your nerves have been damaged.  They were saved, but the no longer rest comfortably on your prostate…
  • Any time your body suffers trauma it takes time for it to recover.  You’ll feel better on the outside and, likely in fact, find that most functions return to good working order sooner – much sooner – than your sexual function…
  • Expect it to take 18 months before you can expect to have a normal sexual function…
  • The more you put your sexual function into “rehab” the greater the likelihood that you’ll re-gain normal function…

The “Rehab” was a new concept to me.  But, as he explained it, it really all made sense.  So…STEP ONE:  Recognize your age and understand that sexual function for me tends to decrease with a natural decrease in testosterone as we age.  We aren’t 17 so quit thinking we are and accept that there is a natural decline in erectile function with age.

STEP TWO:

My Doc preceded to share some practical wisdom.  He said, something to the effect, that when (prior to surgery) you and your wife had sex – you were making love.  It was an experience of pleasure between two people.  It was not clinical.  Now, however, the Doc proceeded to share – you need clinical help – rehab of sorts.  No…you don’t need an “escort clinician” to rehab your penis.  Rather, you need to understand that the more you exercise the entire sexual function, including your penis, the greater the chance of a complete recovery.

Therefore, he warned, don’t assume that your wife’s function is to do your rehab for you.  In fact, he shared, that if you expect your wife to be active in your sexual rehab, you’ll run the risk of changing the experience for her and potentially damage your relationship.  Love making is love making.  Rehab is rehab…and the two don’t mix well together.  You, the Doc stated, are responsible for your own health…don’t place that burden on your partner.

STEP THREE:

My boy.  (I thought it was funny that my Doc call me “My Boy” when I was almost old enough to be his dad)  In order to have effective rehab you need to know some things.

  1. Sex starts and ends in the brain…
  2. Sexual stimulation begins from some sort of sensory stimulation – visual, auditory, feeling, etc.
  3. Once stimulated the message travels through the nerves ACROSS the nerves that have been damaged (that’s where the problem lies) and to the penis…
  4. Once the message is properly sent the penis begins the erection process (which for men is the clear indication that sex has the potential for taking place)…

He proceeded to tell me – what you’ve got to do is find sexual stimulation frequently enough to reteach those damaged nerves to carry the signal to your penis so that an erection can take place.  Then he said, (this is verbatim) “I’d suggest you take matters into your own hands.”  And with those comments he shared some practical advice that I know rubs (no pun intended) many folks the wrong way.  Basically, he said, excluding one’s religious belief, etc. that masturbation is an effective method of sexual rehabilitation following prostate cancer treatment.  Keep in mind, the objective is to reteach the nerves to carry the signal from the brain to the penis.  You are rehabbing your body.

STEP FOUR:

There is a difference between sexual stimulation for rehab and intimacy and loving making with your partner.  However, the most important factor is open and honest communication between you both.  Your partner needs to know that your body has changed and that the actions she once took to stimulate you may not work now.  Does that mean you love her any less?  No.  What it does mean is – stimulation is more work now than it was.  Likewise, you both need to know that it will likely take more effort to achieve an orgasm than it once did and that, again, changes the interaction between the two of you and needs (if not requires) honest and open communication.  For example, my wife understands that today sexual stimulation, for me, requires greater tactile touch – which, candidly, is more work on her part.  Further, we have found that my internal thermometer is a bit out of whack…cause if I get the least bit hot, my ability to maintain an erection is diminished greatly.

Honest communication also requires a frank discussion about how one might be stimulated (for rehab) and the frequency of rehab activities.  WARNING…IF YOU DON’T LIKE FRANK…QUIT READING!

I was told that I should work to obtain an erection approximately 4 to 5 times per week.  Now, let’s be honest…most folks don’t make love 4 to 5 times per week (not if your 50 – and I didn’t when I was 25 – so there…the cats out of the bag).  Further, it is unreasonable to assume that your partner (wife, spouse, partner, whatever) should be expected to be there when you feel its time to rehab.  That said, where do you get your stimulation?  Hum…here’s the problem.  You might find it best to dismiss modern misconceptions about sex and sexual stimulation if you truly wish to regain sexual function without injections, pills, or pumps.  Where do you find stimulation?  Pick it – the Victoria Secret catalog – the internet porn sites (free ones) – magazines – sexually oriented videos – whatever.  Just understand that the use of sexual aids doesn’t make you a perv…but rather is – for this purpose – part of the healing process.

FINALLY…

As I close this long blog out…I just realized that I am now 5 years cancer free.  I have to be honest…  for the first year or so I was less than satisfied with my lack of sexual function.  Then I realized that I was expecting too much too soon and the pressure I was placing on myself was a contributing factor in my lack of performance.  Now, looking back, it was just as my doctor had suggested.  It does take time.  And, yes, I followed his orders to participate in sexual rehabilitation and it paid off.  While I have a prescription for Viagra I rarely use it (maybe one pill in the past 18 months).  Does every sexual encounter end with orgasmic ecstasy – no, but then I am fortunate in that my wife and I understand that – that too – is part of life.  We love each other and our time together.

There is hope for a normal life – or shall I say – a normal sex life following prostate cancer.

As a prostate cancer survivor I am writing a book on the subject and including in that a substantial part for the partners of those diagnosed with prostate cancer.  As part of that, I, from time to time counsel with folks (at no charge) to help them open the realities of rehabilitation and communication.  If you feel that a phone conversation (individually or as a couple) would be of benefit…send me an email at chuck@chuckgallagher.com and we’ll schedule a time.  Meanwhile, I hope this helps.