My Journey Through Pca

I started to respond to some stories and realized it would be better to put it all in one place and tell my story.  I was diagnosed in November, 2008 at age 59.  The initial biopsy showed 2 cores of 18 with cancer, 5% each core.  The cancer was identified as Gleason score 6 (3+3).  I went for the biopsy due mainly to the urologist feeling something on the prostate.  He was sure it was not cancer since it felt differently and was regular in form.  I have had a DRE other urologists tell me the same thing.   So I am not sure of the actual staging of the cancer. 

At the meeting with my urologist my wife came along.  It was important to have a separate set of ears listening.  In addition we took notes during the meeting.  It was a great help when we were talking about options later.  To his credit, the urologist gave me a referral to a radiological oncologist to talk about radiation treatment.  After a month or so we decided at the time surgery would be the best option for us.  I was scheduled for robotic surgery about a month out. 

We started to do research about PCa, outcomes, options, and complications.  Through a series of fortunate events, I found out about USToo.  UStoo is a support organization for men with prostate cancer analogous to y-me for breast cancer (get it USToo).  We met with a mentor from USToo for about 2 hours.  It was a great discussion.  based on the information I felt I had quite a bit of time to think about my decision as well as do additional research.
I read several research papers on complications.  I found out about different treatments.  We started a list of possible actions along with pros and cons.  One thing I found out is there is not any single gold standard for treatment.  Each has its own advantages and disadvantages and that those advantages/disadvantages are very much dependent on the individual that is viewing them.  Doing the research made me think about what is important to me.   I received a lot of support and help from my wife but in the end, the decision was mine.

During this time, one thing I found out was that pathology involves a bit of art as well as science.  I have known cases where the Gleason score has changed (most an increase, in some cases a decrease) on second reading by a second lab.  My wife arranged to have my slides sent to another lab for confirmation.  In addition I went to two other urologists, one a second opinion, one for a color Doppler directed biopsy.  In all, I have had my diagnosis slides read by 4 different labs.  In my case, all readings were very close with only minor differences.  I felt much better about the diagnosis.   For any one newly diagnosed I would urge them to at minimum have their slides read by at least a second lab.

I did a lot of research on different options.  Despite what some surgeons say, surgery does have a significant rate of side effects.  Impotence and incontinence rates are up to 30%.  It is major surgery under anesthetic and has a small but measurable risk of death.   The skill of the surgeon is also very important.  In the only study I found (surgeons do not like to study their effectiveness I guess), measuring based on reoccurrence of cancers, the breakpoint point the curve seems to be at 250 surgeries.  With fewer, the reoccurrence rate was significantly higher.  The curve tended to flatten out at about 250 surgeries.   In addition to the number of surgeries, I would want to know how often they perform RP’s.  The experience needs to be recent.

As to robotic versus open, I have yet to find a study that states a clear advantage of one over the other.  I know the theory and why some people believe robotic is better, however so far the information I have found does not bare that out.  Actually, that makes sense.  What I believe is really important is the experience of the surgeon.  The best analogy I can draw is with home improvement.  When I have hired a contractor to do work on my house, I ask them how much experience they have in doing what I want done as well as looking at other projects he has done.  I do not ask about what tools they use. 

I have done a lot of thinking about surgery and the robotic surgery in particular.  The remote device used in the surgery is a machine driven by software.  Machines malfunction, software has glitches and shuts down.  Medical devices are surely tested more stringently but they do fail.  I was on the OR table once undergoing a heart catheterization when the computer controlling the monitor and sensor crashed.  The surgeon had all the tubes and stuff up in my heart.  He had to carefully put things down and step away since he did not have any visual to work with.  I was awake during the procedure; it was scary (and a bit surreal due to the drugs). 

I talked to a couple of surgeons about the failure rate they have experienced and how did they recover at the time.  One told me that in theory it could happen but he has never experienced so don’t worry about it.  If necessary he could do the surgery open.  The other surgeon told me that a failure did happen once, the machine has an emergency shut down and he was able to continue doing open RP.  He has had over 250 surgeries open as well as robotic.  Should I need surgery, the second surgeon is the one I will most probably choose.

Radiation has its own advantages and disadvantages.  Radiation is designed to kill the cancerous tissue.  Unfortunately it also will also have an effect on any tissue it passes through.  A radiologist told me that the incident of impotence and incontinence is not that much different from surgery.  An additional complication is rectal issues.  Depending on how the radiation is handled (or mishandled) rectal tissue can be killed causing such things as anal leakage.  A few years ago there was a bit in the news about radiological treatment done at a VA center in the east that was done incorrectly and caused significant collateral damage.

Radioactive seeds have their own issues.  They require anesthetic and its associated  issues.  In addition, the radiologist I talked to said that for up to six months with seeds I would need to be careful being around children and pregnant women.  The seeds can give off radiation that extends beyond me and could affect those close to me.

I did not do much research on medication; my cancer was such a low grade that drugs would be overkill at that point.

I did quite a bit of research on Active Surveillance.  I fit all the criteria for AS except age.  I was 59, almost 60 and most recommendations were either 60 or 65 years of age.  AS has its own challenges.  I have heard (not been able to verify in the literature) statistics such as 60% of men in their 60’s, 70% in their 70’s and so on, have been diagnosed with PCa post mortem.   That is most men will die with PCa not because of it.  Great, but how do I know if my PCa is indolent or aggressive?   How do I handle the psychological issues?  How do I feel about living with cancer?  How do I know when I will need to seek treatment? 

I came across an AS study in my area (Chicago).  By this time I was 60 and eligible for the study.  I have been in the study since August 2009.  At the start I had a PSA done every 3 months, DRE and PCA3 test every 6 months with a biopsy to be done annually.  At my entry biopsy I was one of the unfortunate 1% of men undergoing biopsy to also end up with a serious blood infection and a 5 day “vacation” in the hospital.  As a result, at this time they will only do an additional biopsy as indicated by a change in status.  The protocol has since been changed to semi-annual PSA’s and checkups. 
I have been in the study since my initial entry.  To date things have gone well.  My PSA has remained pretty much static, varying between 3.0 and 3.8.  My DRE’s have not changed.  I am pleased with my decision. 

Generally, if you choose a treatment, that precludes other treatments.  Radiation means the option of later surgery is removed.  Depending on my age and physical condition, being on AS could mean that some options could be eliminated for me when the time comes to seek treatment.  On the other hand, there may be newer better options available.  When I started, robotic surgery was in its infancy, improvements have been made, Provenge has been approved as a treatment, new medications are coming online. 

There are some great resources online.  Among them USToo.org, Prostate Cancer Research Institute, and YANANow.net (you are not alone now) a site that many men have posted their experience and thoughts on.

The best advice I can give to men with PCa is fairly simple.  When diagnosed have a spouse, SO, or family member go with you to meetings.  Take notes; enlist all the help you can get.  Get all the information you can, get second opinions, have your slides read by at least one other lab.

Research your options.  Understand the advantages and ramifications of the treatments you are considering.  There is not one “gold standard” of treatment.   The treatment that is right for you could very well be wrong for the next person.  Only you know your attitude, feelings, and views about quality of life versus quantity.  Talk about what is important to you and your SO with your SO.   Only you can take the knowledge and information you have gained and process it through your personal filter. 

To all those unfortunate enough to be in this group, good luck.
usingit15 usingit15
61-65, M
May 19, 2012