Gleason 6 with a twist

Hi Doug,

I hope you read the sticky for the newly diagnosed. There is advice in there to get a second opinion on your biopsy from Bostwick or Epstein.

A Prolaris score does not negate active surveillance as an option for you.

There is a lot of misinformation and a lot of information on the internet. Be very careful about sources.

Definitely visit expert practitioners in all the therapies you are eligible for before deciding. One thing we all have learned is that you can't assume that a specialist in one therapy knows anything about another therapy outside of his specialty. I met with 6 specialists before making my decision. You have plenty of time to do so.

Here is a list of questions I ask patients to ask themselves before deciding:

Questions for yourself

• Do I need to see a pathology report to tell me how contained it was?
• If I choose radiation, can I live with the fact that PSA goes down over a number of years, with bounces along the way, and never becomes undetectable?
• If the pathology is adverse and PSA does not become undetectable, am I prepared to undergo adjuvant radiation with all the potential side effects that entails? (Your doctor has hopefully run a nomogram showing the probability of this happening)
• If the radiation doesn't work, am I prepared to have a biopsy and possible focal brachy re-treatment?
• Which bothers me more - the potential for incontinence and ED after surgery or the potential for retention and irritative effects after radiation? (given the probabilities of those side effects)
• Do I understand the other possible side effects of surgery? (e.g., infection, hernia, climacturia, penile shrinkage, Peyronie's, dysorgasmia, stress incontinence, etc.) Am I prepared to take on penile rehab?
• Do I understand the other possible side effects of radiation? (e.g., fatigue, proctitis, hemorrhoids, frequency, urgency, burning while peeing, ED).
• Am I prepared to undergo 1-8 weeks of radiation (5 treatments for SBRT, up to 44 for IMRT)?
• Am I prepared to undergo surgery and its recovery?

Depv, a warm welcome, although sorry you needed to be here. I'm not clear on how it can be more aggressive on Polaris score, and be a G6. But thats because I'm not that knowledgeable about these types of issues. So i just wanted to welcome you here.

Prat-

Prolaris uses an RNA assay of 31 genes in cancer tissue biopsy cores to give a "cell-cycle progression score." A high score is associated with greater risk of progression (less indolence) that is over and above Gleason score, stage and PSA. It is certainly one factor worth considering in the AS decision. It will probably mean the patient with a high Prolaris score is less likely to be able to stay on AS for a long time, but that is not the same as saying it should stop the patient from going on AS. There is a competitive product, Oncotype Dx, that uses a 17-gene genomic panel to accomplish much the same thing. They are both very expensive (about $4,000).

- Allen

Depov, TA, thanks for the very understandable explanation.

Hundred of surgeries are good, not great. I'd look for a thousand. Of course, my first choice in Florida waould be Vipul Patel in Orlando. He's done more than anybody and has developed some intriguing new techniques. Here are questions to ask surgeons when you meet with them:

Questions for surgeons

1. Am I a good candidate for surgery? What about anatomic abnormalities, previous hernia, effects of anesthesia, cardiovascular disease, diabetes or other comorbidities?
2. Do you think it’s a good idea for me to get a second opinion on my biopsy slides from Bostwick or Epstein? (Yes!)
3. What is my stage, and risk level? (You should know your Gleason score and PSA – if you don’t, ask). How big is my prostate, and what is my prostate density?
• If stage is T3 or T4: How can surgery be a good option if only the prostate capsule is taken out, leaving the rest behind? Aren’t the side effects of adjuvant radiation worse than if I had radiation at the start? (he may not know this.)
4. Am I a candidate for active surveillance (why, why not), and if so, what are your Active Surveillance criteria and protocol? Why those and not something more or less stringent? Should I get a genetic test before deciding? Will that be covered by insurance?
5. How many of the surgery technique you practice (whether robotic, laparoscopic or open) have you performed? (1000+ would be a good answer)
6. Are you going to be doing all of the really important parts of my procedure yourself? (You need to be particularly careful about this at major training institutions where residents may be doing some parts of the surgery, or even the whole operation, while “your” surgeon is overseeing it.)
7. In the last year, what was your positive surgical margin rate? (Should be less than 10% among men with stage pT2)
8. What is your "trifecta" rate? (tricky because you don't want cherry-picked patients)
9. What is your estimate of my risk for lasting incontinence; i.e., a pad or more after a year?
10. What about lasting stress incontinence? climacturia? penile shrinkage? inguinal hernia? Peyronie’s? orgasmic pain or dysfunction?
11. What kind of anastomosis technique do you use? (total - not just anterior)
12. Will the bladder neck be spared? How will you maximize the urethral sparing?
13. If you have positive biopsy cores near the apex: How will you ensure that all cancerous tissue is removed there?
14. Will you take frozen sections and have a pathologist standing by to determine margins and how much of neurovascular bundles can be spared?
15. What measures will you take to assure the integrity of the neurovascular bundles?
16. What kind of penile rehab do you suggest?
17. What kind of imaging (Bone scan, CT or MRI) is necessary for men at my risk level?
18. Will you sample lymph nodes (PLND) or take extended lymph nodes (ePLND), or does it seem unnecessary for my risk level? If so, how will you find them (fluorescent dye)? How will you minimize risk of lymphocele and lymphedema?
19. What kind of aftercare (including sexual rehab) will you provide, and how will we monitor side effects, and for how long? Will you regularly monitor my urinary and erectile recovery progress with validated questionnaires like EPIC and IPSS?
20. How will I be monitored for recurrence? Will I get an ultrasensitive PSA test? How will you decide the point at which you would recommend I see a radiation oncologist? Do you use the Decipher test?

Questions not to ask:
1. Is my age a factor in whether active surveillance is right for me? (only you can decide whether you are willing to live more years with the side effects of treatment, or whether you prefer to be treated while younger when side effects are apt to be less)
2. What treatments should I consider and which is the best for me? (this would be asking your doctor to be an expert in treatments outside of his specialty, and also to know which benefits and risks are most important to you – he doesn’t have time or inclination to be expert in all therapies, and he’s not a mind reader.)
3. If I were your father, what would you recommend? (You don’t know how he feels about his father (lol), and more importantly, what he would feel most comfortable with is not necessarily what you would feel most comfortable with. This is your decision to make and live with – don’t give up your power!)

Thank you ASAd and Allen. A lot to think about.

One thing about Prolaris, it gives you a 10 year outlook. I supposedly have a 2% chance of dying within ten years. Seems like a stat that is not quite so useful. If it came back with a score that was less aggressive, that chance might be 1.7%. From that small difference no treatment would have been necessary?

More alarming to me is the steady increase in PSA- 6 in May, 7.2 in July.

Both tests are indicating growth that is more rapid than I feel comfortable with.

Also, a biopsy can cause psa to double or even triple, and remain there for six months. That has happened to me twice. As Halbert said, PCa usually causes psa to rise slowly. Benign prostate problems are what usually cause rapid spikes.

One thing that I have a question about is effects of toxicity on the prostate. My brother-in-law came over the house the other day and said my house smelled like gasoline. He said that an open gas can in the garage may have been the cause. I admit I noticed it only recently because I had been trying to fix the mower and stirred up the fumes a bit. As I result I threw the gas can and mower out of the garage and things are pretty nice right now.

Maybe a stupid question, but can environmental factors effect PSA?

If in 5-6 months your PSA is say 12, then your doubling time is about every 6 months.
That's not good for a man my age, 57.
Of course it's practically doubled in 6 months already.

Keep checking it then go to a Uro.

Saw Dr. Patel last week. He recommended a MRI Fusion biopsy to get a better look and find out what really is going on. Talking with him gave me and my wife confidence as we continue with AS. Thanks Allen for recommending Dr. Patel. We have also heard stories from colleagues and friends that had nothing but good things to say about him and his staff. Doug

Gosh IT, you make me feel all warm and fuzzy. ;)

Depov, it sounds like you're on a good track. As I think you're discovering, AS is all about the "active" part. If and when something does start to advance...you'll find it in plenty of time to take action. While you're on AS, embrace life--in a way you've been given a second chance to do...and be...who you've always wanted to be.

Oh, and have lots of sex ;)

Depov said...
My wife is freaking out because she wants me to get it treated (surgery) ASAP. My doctor is not so quick to do this. I understand AS more than my wife. She just doesn't think I should take any chances with this.

I have seen many well-meaning wives (relatives and friends) do damage to their husbands because they try to apply what they know about some other cancers to prostate cancer. What she doesn't understand can hurt you. Please have her read the following article:

Can a man be too young for active surveillance?

If she has any questions after reading it, she can post here or send me an email.

- Allen