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/


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.


Sex Following Prostate Cancer – The Real Truth from a Prostate Cancer Survivor!

October 4, 2008

Before reading this post…if you have been diagnosed with Prostate Cancer or are a Prostate Cancer survivor, I would appreciate your help.  I am writing a book, from a layman’s perspective, about Prostate Cancer and how to find solutions to improve our lives.  I am conducting interviews during the months of October 2008 through November 2008.  The interviews are confidential and your name will not be revealed.  If you are willing to discuss your experience…please contact me at chuck@chuckgallagher.com.  From there we can set up a time for a phone interview.  Likewise, this disease no only affects the man diagnosed but also his family, so I am interviewing spouses and/or significant others.  Thank you in advance for your help.  Now I hope this article is of some benefit to you.

First, if you are reading this you, like I, have had the unpleasant experience of being diagnosed with Prostate Cancer.  Just like a diagnosis of breast cancer to a woman, prostate cancer to a man is devastating to hear and begins a long physical and emotional road to a life changing phase of life.

Allow me to make certain assumptions:

(1) You are alive and have survived.  If you have just been diagnosed then this article, while informative, will be a bit premature.  Yes, I know the issue of sex following successful treatment for prostate cancer is on your mind, but your priorities must first be – what is the best treatment that will cure this cancer and eliminate the issue of mortality from my mind.

(2) The therapy you chose allowed for the physical nerves to be spared and hence allow for the potential resumption of sexual function.  All the research for years has shown that removing or substantially damaging the nerves eliminates the ability to achieve an erection and hence resume a “normal” sex life.

(3) Lastly, you recognize that you have undergone a substantial change in your body and accept that sexual function may never be quite the same.  That does not mean that sexual function can’t be quite good, approaching normal, but more than likely by the time you’re diagnosed and have gone through treatment, you are middle aged.  Face it, middle aged men aren’t quite as viral as they were when, say they were seventeen.

In an earlier blog entry I wrote about my experience with sexual function following a highly successful prostate cancer surgery.  The article is referenced here.  For clarity and convenience, allow me to restate a portion of that article here:

Sexual Function: Candidly, that returned much slower than I expected.

  • Within three weeks of the catheter being removed I wanted to test sexual function. To my pleasant surprise with physical and visual stimulation I was able to achieve a marginal erection and orgasm. I was elated. However, I soon found out that my first experience was not sustainable on a regular basis.
  • Like most men, I was given prescriptions for Viagra and informed about other alternatives.
  • Within three to six months, I found that achieving an erection was difficult and that any mental distraction would prove to be an impairment.
  • Viagra would provide some help, but the side effects were bothersome – especially the flushed feeling I felt in my chest and nasal cavity. Even with Viagra or the other alternatives, I did not feel that the result was successful.
  • By the seventh month I was concerned about the lack of consistence in sexual function. That took it’s toll emotionally. While women may not completely understand, men will get it. We are sexual beings and, while we don’t define ourselves by sex, we certainly understand the important role sexual function has in our lives. Inability to perform can have direct effects in other areas of ones life.
  • I was told there would be no ejaculate. That was true and false. There was no ejaculate as men generally know it. However, I did leak a fair amount of urine. I think the urine leakage surprises and disturbed me more than it did my partner She understood that urine is harmless. I soon learned that I should empty my bladder before sex otherwise, there would generally be urine leak when orgasm was reached.
  • By the ninth month I woke to a nocturnal erection. I must admit I was surprised and elated. However, the natural erection was still missing.
  • There had been no significant change from the sixth month through the tenth month, so I was becoming a bit concerned. I sought help in an unusual way, I sought Hypnotherapy as a possible solution. Wow…now that was worth it.

Hypnotherapy: Perhaps for the skeptics I had just healed enough to experience a change, but when I sought help I had the same results. Not knowing what to expect, I was open to anything that would provide some normalcy. I had come to know that things would never be the same. For one thing, I wasn’t 17 years old any more. I had to know that with age sexual performance will change. Likewise, I knew that without a prostate (the old plumbing if you will) I would never have an ejaculation – although an orgasm is quite normal without ejaculation. In any event, I elected this alternative form of therapy. What did I have to lose?

I went through the process feeling quite relaxed. The female hypnotherapist wasn’t sure that it would be comfortable for a man. Frankly, in my mind, if I got the result I didn’t care who provided the service. The process lasted and hour to and hour and one-half.

Within three days it was time to test the program. To my great surprise, I had an erection with less effort than it took over the prior 10 months and the orgasm was powerful. Since that point, there has been a marked difference in sexual function. Why? I’m not sure I know. I feel that two things converged at the same point. One – I had taken time to heal physically and with practice one can achieve a return to normalcy. Two, I feel the hypnotherapy allowed me to by pass my conscious emotional fears and empower my subconscious to know that I was fine and fully functional (within the physical confines of surgery). Either way…the process worked.

Three Years Later

There is a reality for us all.  For now all I can speak for is myself. (I am conducting research into this area – see the tab “Prostate Cancer” if you are willing to help). There are three areas that I feel need to be exposed as men and those who love them deal with the very real and significant issue of sexual function after prostate cancer.  There is no order to the issues listed below – each are important in their own way.

Issue One:  Psychological ramifications of sexual function after prostate cancer surgery. Following my earlier articles and blogs I received a number of e-mails and calls from men and women who appreciated the candid discussion and insight.  As time has moved on I have come to understand that sexual function, especially following prostate cancer, is as much (if not more) about the mind than it is about the body.

Women/Partners – I am not yet sure that you know just how much a man’s identity is tied up in his sexual function.  Now, I can hear two responses as this is being read: (1) you think I didn’t know that? and (2) it can’t be that important.  At the risk of sounding preachy – ladies – No you don’t really know that and, yes it is more important you’ll ever conceive.

While a man is far more than his sexual ability, the lizard brain in us all sends messages that we cannot control – to a man it is to procreate.  So to eliminate that possibility means that the subconscious mind diminishes the worth and value of the being.  On the outside he may seem invincible, but on the inside he is crumbling, but rarely will he be emotionally connected enough to show it or willing to show it.  Showing that pain (emotional pain) is a form of weakness to most men and revealing that would only slide him further into a downward spiral.

What to do? The less pressure there is to sexually perform the easier it is to perform.  Now, by that statement, I do not mean reduce the frequency of sexual attempts.  First, create an environment that will allow for play, fun and all the joy that comes from being sexually with your partner.

Secondly, be willing to become more active in order to help the recovery process.  I have been told by several physicians that muscles grow if they are used.  Basically they were telling me to use my penis (sexually of course) and do so whether through masterbation or with a partner.  I will be blunt here.  I have found that masterbation produces a more consistent result.  For a while I wondered why, then it hit me – I can take all the time I want to with myself.  There is no pressure and I can image that where ever my thoughts may take me, the person I imagine myself with is patient, willing and engaged.

Let me be clear, I am married and my wife has encouraged me to continue this writing knowing that others may, very well, be feeling the same thing or experiencing the same issues.  That said, while sex with my wife is very pleasing, I find that while I can gain an erection, often the sexual experience does not result in an orgasm.  As we have spent time discussing this, it has become clear that my inability to achieve a satisfactory sexual result was psychologically connected to my wife’s attitude and engagement in the process.  It takes more effort to achieve what used to be easy.  Hence, in order for the experience to be satisfying to me – my wife has to, bluntly put, work harder.  Not only is that a substantial change for her, but it puts pressure on me and the more pressure the less performance.

Issue Two:  Bodily Function. As I mentioned in the first article, it took me time to recognize that my body was different.  While sex was more difficult following surgery, it became clear that there was a greater than likely chance that urine would be released sometime during the act of sex.  Hence, I have discovered three things: (1) the less you drink before attempting sex the less chance of leakage; (2) urination immediately before sexual intercourse (or whatever method of sex is selected) reduces the chance for any substantial leakage; and (3) since urine is sterile and effectively harmless, allow it to be used as a form of lubricant or play.  I can hear many scoffing at the third suggestion, but going back to Issue One – if a man is concerned about what might happen (urine leak) during sex, he will be constrained physically (because of that mental state) and hence have a much more significant problem with achieving an erection or achieving a sexually satisfying experience.

Issue Three:  Practice…Practice…Practice. Now, as I write those words, it occurs to me that some may interpret this as applying pressure and increasing the sexual anxiety associated with prostate cancer.  I don’t mean “practice” in that sense.  Rather, it means either love yourself or love your partner (that will depend on who is reading this – you or your partner) enough to provide any and all outlets necessary to heal.  I would suggest that you consider spicing up your sex life so that the stimulation (whether visual, auditory or by feeling) is enhanced.  Having talked with others I know that sexual healing can take place, but it does come with a cost – and in most cases that cost is increased effort.

Question: If your dog broke his or her leg in an accident and the vet told you that he had to walk at least two mile each day and do other physical activities in order to heal – would you do what was necessary to help your dog heal?  If you answer no – “I’d put him to sleep,” please quit reading this article – it’s hopeless.  But, I think most would agree that we’d all say, “I love my pet and would do what ever.”  Strange example, but we need to do whatever is necessary to heal, both physically and emotionally.  No one said it would be easy – physical therapy is hard.

Simply put, sexual healing from prostate cancer is physical therapy that heals on both a physical and emotional plain.  If sex is still a struggle…hang on and keep trying.  It may never be what it was, but in most cases you can sexually recover from prostate cancer.  I did and so have countless others.