YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Bob C and Karen live in Alabama, USA. He was 58 when he was diagnosed on July 17, 2007. His initial PSA was 5.4 ng/ml, his Gleason Score was 3+4=7 and although he says he was staged T2b, this seems to have been his pathological staging after biopsy - his clinical staging was likely T1c. His choice of treatment was Robotic Surgery . Here is his story.

From 1996 I had had one to two episodes of prostatitis a year and a couple of go rounds with urinary stones so I had been getting PSAs done fairly regular. Not all of my PSAs results were readily available from my doctors lost records etc. So a word of caution get copies of everything and keep them. Because of this some of my PSAs are by memory. In 2001 PSA 1.7 between then and 2006 I had readings of 3.2 and a drop to 2.7 Urologist felt like these were due to prostatitis. Then in spring of 2006 4.0 and fall 2006 3.9 both GP and I some concern but blamed rise on prostatitis. My mistake as will become event latter. Should have been investigated more. Also GP doesn't do DRE's in my case might not have mattered.

Missed Dr. appointment in Jan. 2007 and was not able to get another until May 8 PSA 5.4. GP referred me back to my Urologist. My research began. May 17 appointment with Urologist. DRE done by physician's assistant soft slightly enlarged prostate. I felt the Doctor should have done the exam. Due to my fear of biopsy I suggested a round of antibiotics for prostatitis (with no signs of it) and repeat PSA, but do both total and free. After 6 weeks June 26 free PSA 7% total still 5.4. Fifty 56% chance I have PCa. Feared biopsy planned for 7/17. My research now turns to treatments.

Biopsy was maybe the worst part of my whole experience. Bad haemorrhoids (which will become an issue later)made the biopsy almost unbearable. Six cores from each lobe took about 5 mins. Very sore for 2-3 days after. July 24 the bad news which I had expected due to 7% free PSA. One of 12 positive for prostatic adenocarcinoma. Gleason score 7, 20% of cells effected. PSA doubling time relatively slow. Urologist did not think I needed addition test as he felt was organ confined. Appointments arranged with Radiation Oncologists and Surgeon. I had researched treatments to the point that I had pretty much made up my mine I was going for surgery but felt it was worth at least a consult. turns out all three doctors are of the opinion organ confined.

I think every man with this diagnosis must research all possible treatments and make the choice of treatment based on what he learns. Do not make a decision based on what the Doctors tell you. Opinions from others should be heard but what is best for one person is not best for another. Every man must look at themselves from the stand point of their general health and the side effects that they are willing to live with.

My number one priority was to be rid of the tumor. Second was urinary control and third potency. Numbers two and three being much less important than number one.
This is how I ranked my choices and why.

1. Robotic surgery would get rid of cancer, side effects would be immediate and should stay the same or improve not get worst. Pathology reports tell you where you are. If recurrence have options for other treatments.

2. Proton beam looked very good with less side effects but not able to completely stage tumor like possible post-op. Fairly new treatment and therefore limited information as to long term out comes. Plus I would have to be far from home for 10-12 weeks.

3. Brachytherapy and external beam radiation did not sound good at all to me. Seeds migrate and the radiation is less controlled. External beam damages other tissue. Recurrence not many options for other treatments except more of the same.

4. Watch and wait- no way I had already done that for a year.
My consult with a very caring radiation oncologist confirmed my decision. One statement he made which is very true "no matter what treatment you chose you will have some regrets".

I was referred to Dr. Scott Tully in Birmingham AL for surgery. His practice had done over 1,800 robotic surgeries and he personally over 800. Don't be afraid to ask.
My surgery was done on 10/08. Took about 4 hours. One reason so long is he does inter-operative frozen tissue sections. Very good for me that he does this as I had microscopic capsule penetration on the left side. So nerve bundles and more tissue removed on that side and get to keep nerves on right. His post op report to family is clean margins.

Unlike some who have this surgery I hurt after waking up. Most of my worst pain was rectal from the balloon they use and those darn haemorrhoids. Walked around the halls twice that night and ate soft food. Next morning walked some more and was doing not great but ok. As they were preparing me for discharge belly started to swell and had chest pains. I was concerned about heart as was medical staff. Turns out just ileus and gas putting pressure on chest cavity. Thanks to that I get a second night in hospital.

Bowels finally start working, drains removed and I am discharged on 10/10 complete with catheter and large bag. The 90 mile ride home was rough and after two days at home found the leg bag was much easier on the external organs. Did not look forward to going to bed due to heavy tube on large bag made it hard to sleep. The six stab incisions were all closed with internal sutures but I was extremely sore around my waist for almost 3 weeks. Scrotum swelled to size of grape fruit and took almost 2 weeks to go down.

Catheter came out on 10/16 after cystogram showed no leaks. Some pain on urination for almost 3 weeks but has finally gotten better. Had fairly good urinary control with in 3 days of catheter removal which is due to doing Kegels prior to surgery and Dr. Tully doing "prostatic collar". Only one pad a day and have gone from thick one to thin mini pads. Due to soreness not able to restart Kegels until 3 weeks post-op.

One month check up 11/06 seem to be doing fine with urinary control and started penile rehab. Had I not said something to Dr. Tully I would not have gotten appointment for rehab until Dec. 17. Rehab needs to began early or you get the dreaded shrinkage and fibrosis.

Final pathology report sobering. T3a R1 NO MX Gleason 4+3=7. Sobering but not too bad. Lymph nodes clean, seminal vesicles clean with only positive margin being where tumor had gone through capsule. I think this is from biopsy but no medical people will agree and doesn't matter now. Nerve bundle side next to prostate positive perineural infiltration outside edge of nerve bundle negative.

PSA will be done in Jan. 2008 as they want 5-6 half lives of PSA before checking. Like everything through this experience it seems nobody wants to get in a hurry but me. But with that wait if PSA is positive then can start addition treatment at that time.

Regrets: Yes I should have done something in 2006 might not have lost nerve bundle. Concerns: Yes mainly that of recurrence since cancer was outside capsule. Even though I had researched treatments very well I had not spent much time researching recurrence until final path report. So now the waiting game. PSAs every 3 months for first year then every 6 months and pray to stay below 0.2. There are good options for recurrence, but its the fear of the unknown that worries all of us in this brotherhood.

 

UPDATED

November 2007

 

 

Six weeks today from surgery, and I have come a long ways.

Today was the day I was released for normal activity, but the body is not totally ready just yet for some of the physical activity I did prior to surgery. Still some muscle soreness around waist when make a quick move or lift something heavy. Still have some minor scrotal fullness on left side nurse says healing not complete.

Urinary control is doing very well. Only using thin pads and can sleep with no accidents. Bladder spasms did wake me one night when bladder became very full, but no leakage and spasms went away when voided. A little disappointed but also very encouraged.

 

UPDATED

January 2008

 

 

Three month post-op PSA done January 11, 08 - results back today - 0.01 ng/ml. Great news - first mile stone completed. Next PSA on April 11, 2008. Once again the waiting was the worst part. Now for progress update.

Have not worn a pad in ten weeks tomorrow. Only one accident when had a little to much to drink at a holiday party and too much time in traffic on the way home. When I got out of car and cold air hit me with a full bladder could not get pants down fast enough. That might have happened if I had never had surgery.

If I stand or walk for long periods of time (2hrs or more)I do have soreness/pain in perineal area and penis but Dr says not uncommon and that should go away with time. Also slight hydrocele on left but it is gradually getting smaller.

As for ED nothing much happening. Dr wants 20mg Cialis daily but insurance will only pay for 8 tablets a month, therefore not able to totally follow Dr's orders. When I do take them daily slight engorgement with stimulation. Dr has sent a letter to appeal insurance coverage as therapy so once again waiting. With good urinary control and excellent first PSA 2 out 3 ain't bad and I am happy with decision. Many PSA tests ahead before "out of the woods" if we can ever be.

Everybody hang tough and I'll update at next PSA or if anything else changes.

 

UPDATED

April 2008

 

 

Six months have come and gone since surgery. PSA done last week 0.01. Two in a row at 3 and 6 months both at 0.01 thank the Lord.

We are extremely happy. Even with two good reports not able to dismiss possiblity of recurrence, but looking good for now. Total urinary control; don't even think about it now. Back to all my normal activities full time working and dailey routine. Seem to get tired quicker than before surgery but I have gotten older. Still get a little sore in perineal area if stand for long periods of time on hard surface or on long travels (4-5hr car ride).

Dealing with ED is frustrating taking Cialis at least 3 times a week and using the pump. The pump works and at certain times some response from Cialis but nothing "usable". I had discussion with Dr. about injections, Muse and combination of Muse and Cialis. I am not ready for injections but may consider Muse alone or in combination with Cialis. Dr. says since I do have some responce to Cialis things should improve with time.

It has been 11 months since the 5.4 PSA and the beginning of this jounery and I have gone from fear and panic in the beganing to now "controlled concern". I am now much better able to accept what has happened to me and to be thankful for the current sucess of my treatment choice. I am also very thankful to all my "brothers" out there who have been willing to share their stories and support and a special thanks to Terry for maintaining the site.

Nine month check up is due in July and I'll update then or sooner if anything changes. Be tough guys.

 

UPDATED

July 2008

 

 

Well, guys a year has come and gone since diagnosis and nine months since surgery. My doesn't time fly when your having fun. Only those of us who have traveled this road know the range of fears and emotions we go through.

A lot of good things have happened since my last post; last of three children finished college. I am very proud of her she has become a veterinarian just like her Dad. All three have college educations and good jobs. So the wife and I should be able to have a "second childhood" of our own if not for this "monster in the living room". We also had our 34th wedding anniversary and a vacation in Alaska. Like a second honeymoon only I did not have ED 34 years ago.

Nine month PSA done on 7/15/08 readings continue to come back fantastic 0.01. I am not sure way but I was having major anxiety before this test. Really worried about possible recurrence. In fact reread my final path report 4-5 times before Dr. visit. Ask him when will I be "out of the woods" in 5 years? His answer "95% in 5 years if you stay at this reading." So like all of us must try to live with this dark cloud hanging and live life as best we can.

Have an appointment with my GP for annual physical in two weeks I am going to have PSA with him to compare with surgeon's as after 12 months will be released for testing locally.

Urine control is still excellent. ED that is another story tried Muse 500mg first by itself got some filling but went away when laid down. Tried it 24 hours after Cialis same story. Tried with no Cialis with light band at base of penis it worked. Good news an erection great but the pain after all three attempts was terrible. Burning pain in penis, testicles, perineal area and groin. When told results to Dr. "most guys have pain with Muse". He some how concluded that I have a venous leak since it would not stay up when I laid down. Not that I only have one nerve bundle left and it's only been nine months since surgery and there wasn't enough blood flow to close veins. Needless to say I don't totally think he is right. He is pushing injections but if Muse doesn't work due to leak why would injections. They use PGE1 for injection same as is in Muse. Because of the pain with PGE1 and sticking a needle in your penis I am content to continue with my VED, Cialis and time to see what happens.

Still get sore if stand or sit on hard surfaces for long periods of time and lifting still results in slight discomfort. Thanks to all my PCa brothers for support and sharing your journey and once again a special thanks to Terry for the site, it really helps each of us.

Hang in there guys, I'll post again at 12 month check-up.

 

UPDATED

October 2008

 

 

It has been a year since surgery. A lot of ups and downs but things continue to be good. Last PSA holding at 0.01. Had another at a lab my GP uses 0.008. Not much difference really between the two labs. Surgeon has released me back to my local Uro guy.

Since my tumor had gotten outside capsule wants PSAs every four months instead of the routine six months after a year has passed that most do. That coupled with the answer to a question I asked has taken a little wind out of my sails. My question was "If PSA stays low when am I cured?". His answer "95% confidence after 5 years of non-detectable PSA".

Urinary control is almost normal once in a great while after too many drinks will have a little squirt.

ED is another issue. Nothing. Some filling about an hour after Cialis on empty stomach and not willing to accept the pain from Muse. Did have a visit with ED nurses at surgeon's office and they present a very positive opinion of thr bi-mix (Papaverine plus phentolamine) injection and will work with me for correct dose. So......... I am considering trying it. No way was I going to try the Caverjet after the experience with Muse.

I am not sure why but have suffered some periods of depression and anxiety over the last few months even with my fairly good prognosis. I think part of it is the fear of the unknown and yes the ED issues certainly contribute.

As always a special thanks to Terry and all my brothers out there for caring and sharing. Hang tough guys.

Bob's e-mail address is: carsorl@auburn.edu