Summertime and the Livin' Is Easy!

It seems difficult to believe that we are nearing the mid-August mark.  I realize that it's been a long time since I updated this prostate cancer blog, but I consider that a good thing!  Not much news here.  However, I'll share what I have.
Today I had blood work and urinalysis done.  The blood work is just PSA and the urine I'm not sure about.  I'll ask when I go for my appointment with Dr. Dwyer next week.  My last check with him was at the end of May and the results were just what we want- PSA undetectable.  So I'm feeling very fortunate.
I'm also doing fine on the day to day- feel well and energetic.  It is now just past eight months since my surgery.  I have had no health problems that I'm aware of.  My continence issue is nearly 95% corrected.  I still wear a pad, but one does me for a whole day, even days when I go to the Y or walk with our walking group.  I try to do four miles on the treadmill three days a week, and about two miles outdoors two of the other days. 
Barb and I had a great month of July.  We moved to a rented cottage in Pointe du Chene, near Shediac, for four weeks and it was a delight.  The weather was exceptional and we had lots of family and friends around.  We go back for one more week at the end of September.
On April 30, my 68th birthday, we were part of a delegation from our support group who attended the Wake Up Call breakfast at the Delta Beauséjour.  We had a table with information and were able to talk to some of the others who attended.  This was the first time that this national fundraising effort took place in Moncton and everyone was pleased with the results.  It is a fundraiser for the Network.
The Greater Moncton Support Group met until June and then we took July and August off.  Our next meeting will be September 5 at the YMCA in Moncton at 7 pm, but notices about that will go out and be posted about two weeks ahead.
In June I spent two days in Toronto as the lay delegate to the PCCN Pilot Grant Panel.  I sat with about 20 scientists and we reviewed applications for research grants.  It was interesting, but I was quick to admit the science was way over my head. 
On Father's Day, June 17, about twenty of us met at Rotary Lodge in Centennial Park for a picnic lunch and then a virtual walk to support prostate cancer awareness.  It was virtual because the official New Brunswick walk was in Fredericton.  However, I had collected pledges to the tune of $2285, so half that amount will eventually reach our support group to help us with our costs.  The Prostate Cancer Canada Network has been very helpful in our efforts to establish the local group.  Carol Murray was able to stop in that day on her way from Fredericton to Halifax and she brought greetings from the Atlantic office.

Barb and I are registered to attend the Prostate Cancer Research Institute (www.pcri.org) conference in Los Angeles from September 8 - 10.  We were there last year and found the experience positive and informative.  So we are game to give it another try.  We go at our own expense, but flying on points helps and the cost for accommodation and meals is reasonable.  The sessions look interesting and I'll try to do an update here when we get back.  

Father's Day Walk - 2012

On June 17, 2012, I'll be joining thousands of people across Canada participating in the Father's Day Walk/Run organized by the Prostate Cancer Canada Network. Funds from this event go to help local support groups and vital research, awareness and education. If you would like to support me in this effort, please visit the link below.

Wayne

Father's Day Walk/Run

my.e2rm.com

Join us for the 2012 Father's Day Walk/Run in support of prostate cancer.

25 March - Upcoming Support Group Meeting

The regular meeting of the Greater Moncton Prostate Cancer Support Group will be held on Wednesday, April 4, at 7 pm at the YMCA, 30 War Veterans Avenue, Moncton.
Special Guest Speaker- Dr. Guy Breault, local urologist/laparascopic surgeon.  

This meeting is open to prostate cancer survivors, their spouses/partners, and anyone interested in learning more about this disease. 

Everyone welcome! 

25 March - And the story continues .....

When there’s been no update on this blog for a while, it’s a good indication that things are going well and I’ve been getting back to our usual activities.  That has been the case.

I’ve just passed 75 days since my surgery. 

I was told there would be a four to six week recovery period and that for some patients, it is longer than that.  For almost all men, there is a period of incontinence of varying degrees.  For almost all men, there is a period of impotence of varying degrees.  Every story is different and this becomes more apparent as we live through this experience.

From February 28 till March 12, we took our recovery phase to Florida for a vacation.  This was planned last fall and my urologist/surgeon encouraged us to keep the plan- he said it would be great to have the trip to look forward to.  And he was right.  We flew to Orlando on the 28^th and joined our family at a rented house in Kissimmee.  Our son, his wife, and three children (ages 10, 8 and 5) and our daughter, her husband, and her boys (ages 3 and 4 months) shared a five-bedroom house in a quiet gated community.  We’ve done this before and it’s an economical way for families to vacation together.  Because we were in recovery mode, our plan was to do very little during the two weeks.  The youngsters would head out to the various parks and Barb and I (with our daughter and baby Spencer) would enjoy the day by the heated pool with our books and food and drink.  It was a wonderful holiday and we thoroughly enjoyed having time with our grandchildren.  Our two older ones were home in Canada, but we kept in touch by Facetime (the iPad version of Skype) while we were away.  I felt well the whole time- able to walk (sometimes pushing the stroller) every day and spend time in the pool and hot tub.  The more active I became, the more dribbly I was, so I was prepared to wear a Depends Male Guard (heaven forbid they would be called sanitary napkins!) to catch the drip.  Usually one or two a day would suffice and I’m dry overnight.  I guess now my goal is to be totally trained before grandson Spencer is!  I still do Kegel exercises daily and I think they do help.  At any rate, I have no problem with any of this.  It’s not a surprise and it will be encouraging when this phase is over.  A friend who had the same surgery by the same doctor wore a pad for eighteen months, but has not worn one since New Year’s Eve.  Now I am home and this past week I added some activities.  On Monday and Friday I was at the local YMCA and was able to walk 4 miles each day on the treadmill and do four weight machines (with reduced weights).  On Tuesday and Thursday morning at 8:30, I joined our outdoor walking group and we walk an hour on a local trail; that would be at least two miles.  Wednesday we drove to Fredericton (almost two-hour drive each way) to visit an elderly relative and have lunch with friends.  This was our first long drive since my surgery and we had a lovely day to make the trip.  No problem.  Wednesday evening we were out to a movie, “The Iron Lady”, at our local film club, on Friday I ushered at our local Capitol Theatre, and Saturday, we went out to dinner with friends and then to an amateur theatre comedy production.

No talk of erections yet, and no sign of one either.  This is not a surprise.  However, it is an adjustment.  From puberty onward, men have daily erections (while sleeping or while awake, depends on the situation).  When the prostate is removed, even with nerve sparing surgery, for almost everyone, there will be a period of impotence.  Radiation patients echo this, so without taking a survey, it’s an issue for most prostate cancer survivors.  And an important issue, especially for the many younger men who are being diagnosed.  Most feel that it is a priority to deal with the cancer, but at what cost to their lifestyle?  Our doctor says it depends on how important erections were to your life before treatment.  The patient will decide whether assistance should be provided to improve the situation- medication (like Cialis, Viagra, etc), injections, pumps, penile implants) on the advice of his doctor.  It is obvious that the patient’s partner (if there is one) should be included in the decision.  It’s important to note a few observations from reading and talking to others- if there were erection issues before treatment, don’t expect them to be in any way improved afterwards.  It is possible to have an orgasm (and the jury is out on whether it is better or not) without an erection.  There is a big difference between libido (the urge to merge) and erectile function.  It is possible to have a sex life with or without erections- that depends on the comfort level of the patient.  All that being said, it is a major concern and should be part of the discussion, before and after prostate cancer treatment.

There is a closed Facebook group called Prostate Cancer Men’s Support which I have found interesting.  Go to Facebook, search the group’s name, and you will meet Bill Moore, the founder of the group.  Membership is restricted to men, almost all of whom are prostate cancer patients at every stage of the disease.  Because this is a closed group, no subject related to treatment etc is taboo and the discussions are interesting and informative.  You might find it valuable.

23 February - Pathology Results

Barb and I are just back from our appointment with Dr. Dwyer- six weeks post surgery.  We had to wait almost an hour to get in to see him, but it was worth the wait!  He had the results of the PSA test I had on Monday- the PSA is undetectable.  The cancer is gone.  Of 38 slides taken from the prostate itself, about a third showed cancer.  But the cancer was contained and thus removed.  The tests of the margins are negative.  My grade of prostate cancer is now T2c.  This means the cancer was on both lobes, but did not spread beyond the prostate.  My Gleason score is 3 + 4 which is what it was before surgery.  This means the tumour was mostly low grade.  Dr. Dwyer’s take on the pathology results- “These results are as good as it gets.”

What happens next?  I will have a PSA test every three months for the next year.  If there should be a recurrence, it is likely to happen in the first year.  But there is no reason to think there will be. 

These results indicate that my choice of active surveillance was the right one when it was made in June 2009.  It would have been great if I could have continued on that path, but it wasn’t to be.  If I couldn’t be in the 65% who would never need treatment, then this is the most favourable outcome I could expect. 

Dr. Dwyer feels that things have gone well to date.  He checked the incision and it seems fine.  I will continue to heal over the next couple of months, but I no longer have restrictions on anything. 

So happy hour coming up will mean a bit of a celebration for us!  We appreciate the concern so many have shown, and we’re more than happy to share this positive news.  Now we've got packing to do- we head to Florida on Tuesday!

Wayne and Barb 

22 February - Upcoming Support Group Meeting

The regular meeting of the Greater Moncton Prostate Cancer Support Group will be held on Wednesday, March 7, at 7 pm at the YMCA, 30 War

Veterans Avenue, Moncton

.
Special Guest Speakers- Karen Lusby and Janice Pellerin, nurses at the Continence Clinic, Moncton Hospital.  

This meeting is open to prostate cancer survivors, their spouses/partners, and anyone interested in learning more about this disease. 

Everyone welcome! 
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Just a quick update today.  Tomorrow at 12:45, we see Dr. Dwyer for the results of the surgery I had on January 9.  I'll post these results after the appointment.

No matter what, we are planning our escape to the south.  On Tuesday, February 28, Barb and I fly to Toronto and then on to Orlando.  We'll spend two weeks in the Kissimmee area with our son Andrew, his wife, Nathalie, and their three children, Justin, Emilie and Sarah, and our daughter Meredith, her husband Andrew, and their children, Aidan and Spencer.  This will be great fun, to spend time with these grandchildren, the youngest of whom is just four months old.  We'll be back in Moncton on March 12.

 

6 February - So How Am I Doing?

It is four weeks today since I had my surgery.  There hasn’t been a lot to report since the catheter was removed two weeks ago, but I’ll give you an idea how things are going now. 

First, I am feeling better every day and for that I feel fortunate.  I am making a conscious effort to pace myself, and do not plan ahead.  We decide each day what we may be doing that day.  And it’s working for us. 

For almost all prostate cancer surgery patients, there will be incontinence for the first while.  This can vary from hardly anything, to dribbling on a fairly regular basis, to total incontinence which strikes a minority of patients.  There is hardly any way to predict how this will go.  One indicator is how things were going before the surgery.  I was rarely up at night to go to the bathroom and that is something which many men cope with.  Following directions (as I am prone to do), when I went up to the hospital to have the catheter removed, I took along a pair of briefs (not boxers) and a male guard pad (which we had bought at the drug store).  We had also bought a package of incontinence pads thinking we might need them for our bed or for furniture when I might be overflowing.  We also had a package of Depends for Men available which now have varying designs to make them more appealing (!?!).  By the time I was home a couple of hours the day of decatheterization, I noticed that my underwear and jeans were wet.  So it was necessary to take more drastic action.  I decided to move to the Depends and see how that worked.  It did work much better and there was no overflowing from them.  In the two weeks since, I’ve been trying various methods to see what works best for me.  I realize that every patient is different and that we just have to find the key.  Every recommendation says to continue doing the Kegel abdominal floor exercises, and I do.  I am almost totally dry overnight, but to be so, I am up once and sometimes twice when I feel the need to go.  This is different for me and I’m working at getting so that I can sleep from 11 till 6 (my preferred hours) without getting up at all.  I drink very little after supper in the evening.  I haven’t given up tea, coffee or red wine which is often recommended, but I’ll have to be more desperate before that.  There has been improvement.  I don’t really need the Depends any more, but I am still using them as a precaution over my underwear/pad especially when I am out.  That seems to be working okay.  So this is part of the adventure, one most of us would gladly do without, but it goes with the territory and things could be much worse.  As one patient says, our aim is to become “water tight”, so we’ll see how I’m doing when I see the doctor. 

So what else has been happening?  I am driving now and that doesn’t seem to be a problem.  I haven’t done any long drives, but doing errands etc seems okay.  I do not lift anything over five pounds and won’t for a while yet.  My incision seems to be healing okay.  For a few days it seemed a little red and we wondered if that was okay- it’s amazing how little we know about these things.  The steri-strips came off easily and I think things are healing as they should.  My appetite is good and I am able to enjoy my meals.  We have had visitors here at our place, and we have been out to several things- a meeting, church service, to our son’s for supper and a movie.  Last week we had a 30 cm. snowfall, so the February meeting of our prostate cancer support group was postponed.  It will be held this Wednesday, February 8.  Our guest speaker is John Staples, a local pharmacist, who will discuss alternative treatments for prostate cancer.  I have been able to do some computer work- sending group messages about events etc.  I’ve also written a few articles for the website Helium (www.helium.com).  A couple of these deal with prostate cancer, treatment, symptoms etc. 

There is an interesting new book I’ve discovered which I think might be a help to any newly diagnosed patient:  “The Decision: Your prostate biopsy shows cancer … now what?”  Dr. John C. McHugh, Jennie Cooper Press, 2009   Dr. John McHugh, a urologist in Gainesville, Georgia, for about twenty-five years, was diagnosed with and treated for prostate cancer in 2007. Because he experienced firsthand the difficulty of making the life-changing decision as to treatment, he decided to record his findings both in a book and in a blog on-line. This was a new approach to decision-making, and the feedback from readers and patients has been positive and overwhelming.  There is also an associated website-  http://www.theprostatedecision.wordpress.com/

My next appointment with my urologist is on February 22.  I’ll have blood work done before that and when I see the doctor, he will be able to give me that report along with the report from pathology.  I’ll have my questions ready, and we’ll see where we go from there.  So for the moment, no complaints from my corner.  We’ll just continue healing day by day.