Gleason 7 at Healing Well: Your Stories

great idea, joe. will post my answers in the morning to this thread and help you get it started

david

1) When and How did you find out that you had PCa?

Steadily raising PSA, 1.44 in 2005, 6.4 in 2013. Biopsy 5/23/13 3+3=6, second opinion by Bostwick 3+4=7, another read by Sloan confirmed 3+4=7.

2) Why and How did you choose your primary treatment?

I chose HDR Brachy & IMRT 25 sessions radiation due to my understanding of the cure rate and side effects, in my opinion radiation was the best option for me. Time will tell.

3) Why and How did you choose your secondary treatment?

Still undergoing my primary and god willing there won’t be a need for a secondary treatment.

4) How are you doing now?

So far so good, a little urinary urgency and frequency.

1 - October 2010. Had spent weeks in India for work and reacted really badly to the anti-Malaria meds. Had a full check up (was 40), PSA test came back slightly elevated at 2.4 (as I recall). That lead to DRE, a few bouts of antibiotics, two more PSA tests and finally a biopsy.

2 - This is a loaded question. In short, after consulting various urologists, surgeons, oncologists, patients, and hospital administrators I knew, and after exploring my personal preferences, I decided that surgery was the best option for me at my age and with my type of disease. I then decided that I wanted someone with thousands of surgeries and with a great track record. I tracked someone down, went to the interview with my wife and was sold on my decision.

3 - As they say in Italy, I'm going to scratch my balls now. I think you guys say "touch wood". No secondary treatment needed yet.

4 - my 3 year PSA test is any day I get my butt to the lab. Scoring zeroes so far. Never had issues with incontinence or ED.

5 - extra credit - Given my age, I expect all the good news to cease at some point and then deal with secondary treatments. That's why i read closely when you guys talk about HT and radiation. I dream of making it to 65 without it coming back but I know that's asking a lot given the sheer number of years involved.

1) When and How did you find out that you had PCa?

My cardiologist ordered PSA test as part of a broader blood test in April, 2013. Although my paternal grandfather died of PCa at age 64, my dad died of a heart attack at 50. I've always been focused on my heart. PSA came back at 6.7, up from 2.1 in 2011 (I missed 2012). Went to a urologist and scheduled a biopsy on June 4, which was positive - Gleason 7 (3+4).

2) Why and How did you choose your primary treatment?
My local urologist was all about robotic surgery until he heard I'd had abdominal surgery in 1978. There could be intestinal adhesions that complicate the placement of the robotic arms. He could not get me out of his office fast enough with the card of a local radiation therapist. Then a friend who is a breast cancer oncologist ordered me to "get out of the community and get to a major cancer center."
So I scheduled an appointment at Sloan Kettering with an oncologist who specialized in the treatment of PCa that recurs to help me sort through my options. She (Dr Karen Autio) was awesome. She spent as much time as we needed to understand all the implications of each option. We (my wife and I) chose surgery and felt an enormous weight lifted once we felt we had made the most informed choice. My surgeon, Dr. Vincent Laudone, was even more awesome and I had nerve sparing RP Oct 2, 2013.

3) Why and How did you choose your secondary treatment?
My pathology report came back clear. No secondary treatment is required ( not ever, please God!)

4) How are you doing now?
Surgery Oct 2, back to work (software consulting sales) on October 7. Mowed the lawn October 9. Feel great. Catheter out Oct 11 and I'm dry, tho I pee a bit more frequently. By October 16 I felt 100% normal except I can't ride my bike till spring. I think I'm one lucky sum-beeyatch. Next test (hafta wait 3 weeks) is ED - but I've awakened a couple times ready for action - so I'm hopeful!

1- August 15, 2008, after my 3rd biopsy spread over a 15 month period

2 - My uro was open minded and not push, wanted seeds, but RO didn't think I met the criteria back
in 2008, so went for surgery. Since robotic was too new in my area back then (0nly 15 had been'
done), went for open. Just as well, because due to complications, robotic surgery would have been
halted

3 - Surgery failed within 9 months, SRT was encouraged by Uro. Met with 3 RO's, picked one I thought
would be best, but turned out to be worse mistake in my life due to all the severe radiation damage
that has left me disabled and with a Urostomy and with permanent chronic pain.

4 - Not too good. With my oncologist's advice, we are doing WW at this point. No attempts at advanced
treatments at this point. PSA as of April, was 60 plus and rising fast. PET scan as of Feb showed
no visible bone mets. Main treatment at this point is pain control.

David in SC

Hi Robot,
1) Had trouble urinating. Frequently during the day and night.
2) RRP was recommended by my Urologist after biopsy.
3) Secondary treatment was necessary in my Urologist and in my opinion (rising PSA).
4) I'm doing quite well provided my next PSA test (in Dec), comes back as <.04 as have all previous ones.
More info in my signature.

Hope this info will benefit you and or someone else.
All the best to you.
Mag

1) When and How did you find out that you had PCa?

My paternal grandfather had PC when he was in his late 60's and only had HT for it as he had so many other health issues like heart disease, which finally did him in before the PC had a chance to spread.

 

I had a rising PSA which in 18 months went from 2.5 to 5.25 and triggered a biopsy in April 2011 that was positive for 2 cores of G7 3+4 with 15 and 20% volume. My slides were read by Bostwick Labs, no second opinions.

 

2) Why and How did you choose your primary treatment?

I first looked at PBRT as I did a lot of research on this but my BCBS of Alabama insurance would not cover the cost and being away from my business for 6-8 weeks was not a good option. I looked at seeds and again after doing research and finding the best  and nearest clinic for this was in Atlanta, my insurance would not cover going there as it was out of my network. I was left with doing seeds at a local clinic without a lot of PC experience or RALP with a surgeon who had tons of experience. I had my RALP on June 8th 2011 and my URO/Surgeon was surprised at my post pathology as my prostate was so much bigger than any test indicated (69grms) and my tumor was 60% of the organ, but was 100% organ contained. He also thinks that it was very aggressive and if I had waited  a couple of years before treatment my outcome would have been much worse.

 

I did not join HW until well after my surgery so I did not have much help in my decision other than my own research. In the last 2 years the local clinic for seeds has a lot of experience and even a CyberKnife clinic has opened locally for treating PC. It is hard to say would have I have done anything differently, but I would have had more option now. Maybe with what I have learned from HW if my diagnoses was today I would look more at seeds and CK, but it is real easy to second guess ourselves.

 

3) Why and How did you choose your secondary treatment?

So far no secondary treatment has been required as my PSA has remained undectable for 2+ years and I am now on only yearly PSA checks.

 

4) How are you doing now?

My URO in September after my last PSA test used the cured word and I have been 100% continent since 3 weeks after my RALP. My nerves were spared but highly traumatized when my large prostate was removed so I have 100% ED that I do not see ever improving. I also have a very bad veinus leak issue that has made using injections for ED almost useless now too. I am happy to be continent and maybe cured so at my age the sex isn't all that important, at least that is what I keep telling myself.

 

1) When and How did you find out that you had PCa?

After an annual PSA test that showed a rising PSA from previous years. I requested and received additional PSA and free-PSA tests that indicated potential cancer. After a 16 core biopsy, performed under IV sedation, my 3 + 4 = 7 cancer was diagnosed. Original biopsy slides were read by Dr. Bostwick as my urologist told me he believes in getting pathology from an expert the first time.
This was in the summer/fall of 2008, i.e. 5 years ago.

2) Why and How did you choose your primary treatment?

My wife and I burned the midnight oil reading books, articles and studies. Despite information overload we like to be thorough and educated patients. It was important to me that the cancer be cured but I was also very concerned about the QOL after treatment. After research that led us to conclude that LDR brachytherapy was extremely likely to cure my cancer with a lower chance of nasty SE's, that was our choice.
We also met with multiple surgeons, RO's and brachytherapy experts before choosing the experienced team that would work on that important real estate.

3) Why and How did you choose your secondary treatment?

No secondary treatment and, God willing, there will be none.


4) How are you doing now?

Absolutely great. My PSA has continued to fall and, after 5 years, my sexual and urinary functions are very much the same as they were pre-treatment. The only lingering SE is reduced semen.

Jim

1) When and How did you find out that you had PCa?
My PSA had risen to 3.9, and then 4.1. My regular doctor discouraged me from going to the urologist, telling me that the levels were not significant. It then jumped from 4.1 to 6.3 in 4 months, and I hustled to a urologist I had seen in the past. He performed a biopsy, and it came back Gleason 4+3 in several cores.


2) Why and How did you choose your primary treatment?
I did a lot of studying, and the Gleason 7 led me to decide on an open procedure. I asked my urologist what he would do if he had this biopsy result, and he indicated he would do what I am doing. I asked him how many open procedures he had done, and he told me several hundred. So I went with that. I did not give much thought to radiation, I wanted the cancer OUT.


3) Why and How did you choose your secondary treatment?
None so far, and hopefully never. I know with this Gleason number and some EPE, the cancer could come back.


4) How are you doing now?
Very good. I feel fine, and my latest (18-month) PSA is undetectable. Urinary control is ok. Erectile function is actually showing a few signs of coming around with 20-mg Cialis (after 18 months, finally!!!).
Awhile back I wrote a scathing letter to my original GP doctor about how he blew off the initial high PSA numbers, but I never heard back from him. He moved on, and I have a new GP now.

Sorry I posted this to the wrong link

1. Our small town has a health fair every year and my wife and I started participating.  In four years my PSA went from 2.2 to 4.4.  Our GP called me at work and said reviewing the results it was time for a biopsy and he connected me to an urologist in a larger city.  My biopsy was positive in 1 core out of 10 at 3+4 Gleason.

2.  When asked what I wanted to do I said I wanted the da Vinci method if I qualified.  I worked full time and didn't want too much time off.  The urologist sent me to another surgeon that did the da Vinci method.  I contacted one of my relatives who is a nurse practitioner with a surgical group and asked him to check him out with his Dr’s.  Came back with rave reviews.  At my level of PCa, I was a prime candidate.

3.  I have not had any secondary treatment.

4.  I have been zero PSA for 66 months.  I am continent, sexually active and 95% the way I was before surgery.  You just loose a bit of yourself after surgery.

 

Age 61 at diagnosis

 

PSA Jan 2006 2.8, PSA Jan 2007 3.7, PSA Jan 2008 4.4

 

DRE Normal, Biopsy positive 1 core in 10,

 

Clinical T2C, Pre surgery Gleason 3+4=7

 

Bone scan Normal, Cat Scan Normal

 

da Vinci robotic Surgery April 30, 2008, Fremont Nebraska

 

Post 66 month PSA-undetectable       

1) When and How did you find out that you had PCa?
At age 38 I was getting up more at night. My primary care doc did a DRE and PSA. He said my prostate was boggy and my PSA was 4.5. He sent me to a urologist. Biopsy was negative. We tried Cipro and Motrin with limited success--PSA kept creeping up. 2nd biopsy, negative again. Then we tried Avodart. It knocked my PSA down, and kept it down for several months, and then the PSA spiked. At the same time, for the first time, my DRE felt abnormal to the uro. 3rd biopsy at that point: jackpot! This whole process had taken 5 years. I now believe my early "symptoms" were just a touch of BPH and/or proctitis.

2) Why and How did you choose your primary treatment?
I got a little swept up by the uro's description of Da Vinci. I sure wish I had gone to a doc who was more experienced on the robot, though. I was fairly well sold on prostatectomy in general (for men like me) after skimming Walsh's book. I wanted something that had a very well established track history, with decades of followup data available. But I admit was a bit dazzled by the technology--I even played with a demo version of a Da Vinci robot a few weeks before surgery.

3) Why and How did you choose your secondary treatment?
I thought pretty hard about doing proton beam therapy for salvage, but I just couldn't figure out a way to make it work for my family. I went with the radiation oncologist recommended by my urologist (but I read his CV and everything else I could find on him as well) and was comfortable with the idea of IMRT. I also consulted with a medical oncologist. I initially thought my margins were negative (and that I likely had systemic disease) but in fact I had a positive margin, and while my odds were still roughly 50/50, that was definitely good enough for me to try salvage radiation rather than going straight to hormone therapy (at age 44).


4) How are you doing now?
Fine as far as PSA goes. I get tested every January now--last time I was still less than 0.1. As far as side effects, some ED from surgery. Meds help. No incontinence to speak of. And even though I had radiation proctitis at the end of IMRT, a colonoscopy last year showed no sign of radiation damage, and no sign of secondary cancer or even polyps. I have a long way to go, though, to say I'm done with prostate cancer or that I won't have a radiation-induced cancer.
I'm more worried at this point about cardiovascular health--my blood pressure is on the rise and last year I had an abnormal EKG (right bundle branch block) for the first time. There was no underlying disease or defect found, and no danger from the RBBB itself, but I'm now seeing a cardiologist on a regular basis. I'm also a little spooked by my genetics--the same DNA test that said I had a very high chance of prostate cancer says the same thing about coronary disease.

1.  Accepting the fact that I might have prostate cancer was a slow process for me.  My physician had started including the PSA test as part of my annual physical exam when I was about 50.  All was apparently well for quite a few years, but after I entered my 60's, the PSA number started creeping up.  At about that time, I also developed symptoms of urinary urgency.  I attributed these things to an enlarged prostate.  After all, my older brother was experiencing the same symptoms, and his 3 biopsies were all negative.  He was put on Flomax and, PRESTO!  Problems solved.  So, when my  PSA took a jump beyond 6.0, it was with a degree of reluctance that I finally took my physician's advice to talk to a urologist.

Oh, I also had started working part-time at our local funeral home, and we did a couple of services for men about my age who had died from prostate cancer.  Their deaths were on my mind, proof that prostate cancer actually kills people.

At the uro's office, a DRE revealed a palpable tumor on the left side of the prostate, and the undeniable conclusion was that I would need a biopsy to rule prostate cancer in or rule it out.  A biopsy showed six cores positive for Gleason 7, all on the left side.  After surgery, more cancer was found on the right side.

2.  I would have chosen brachytherapy were it not for the fact that my prostate was quite large, and so I wasn't really a candidate.   I also considered radiation, but gradually came to the decision to have robotic surgery, knowing that if the cancer turned out to be NOT confined to the prostate, radiation could still be an option to "mop up" whatever might remain.

3.  Thankfully, no secondary treatments have been necessary.

4.  I am fortunate to be feeling very well, indeed.  My periodic PSA tests have all come back undetectable.  I've been perfectly continent from about the 8th week after surgery.  Honestly, I was surprised when sexual function didn't return.  In spite of my uro's warnings, I always felt I would be just fine, and quickly.  That hasn't turned out to be the case, but if that's what I had to give up to get rid of an intermediate risk cancer, well, so be it.  I can deal with it.  Meds for a bit of high blood pressure, and the fact that I've developed a bit of Type 2 diabetes surely haven't helped the ED situation, and I sometimes wonder if I might not be dealing with ED even without the prostatectomy and its after-effects.  The cancer and the surgery are fading to a distant memory, and in retrospect it was much, much harder dealing with two herniated discs in my neck that cropped up in November 2010, just a few month after the prostate surgery.  The bulging discs were effacing the spinal cord.  The pain and the arm paralysis were unlike anything I've ever had to deal with before or since.  That injury has left me with less flexibility in my neck, and I've developed a bit of a rotator cuff problem, but for the most part I don't feel anything like 68 until I look in a mirror.