Biopsy results

Sorry to hear your news and that you now have official status in our little club. Hopefully, we can help you get through this.

When you meet with your doctor you'll want to find out how many of your 12 cores tested positive and if they were all G7 or if there were any G6s in there. He should also be able to give you the location and the percent that was cancerous. That said, I still recommend that you get a second opinion on your biopsy slides from Epstein or Bostwick, as per the sticky for newly diagnosed patients. It's probably the easiest and most helpful thing you can do at this stage.

Although you don't know the specifics of your diagnosis yet, G7 (3+4) is considered favorable, intermediate risk. In general, your chances of a cure are excellent and pretty much any treatment has a very good chance of curing you. Surgery is certainly a possibility, but I would also recommend that you check out brachytherapy (both seeds and HDR) and SBRT. You'll need to visit practitioners of each type of treatment to learn about those as you can't expect your urologist (who is a surgeon by training) to be completely up to speed with this. There are guys here that have had surgery and all the different types of radiation that can tell you about their individual experiences.

Most important, I wish you the best of luck and that you can navigate the road ahead without too much trouble. We'll help however we can. Good luck to you!

Derfwood,

Here's my list of questions to ask a urologist. Last week the head of Urology at a major hospital here said it was the best set of questions he was ever asked. (Of course, he had a record worth bragging about; another surgeon with a lesser record might not agree.)

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!)

Not the news you wanted. You've have plenty of options, don't rush into a decision. You'll want a second opinion and you should talk to a radiation oncologist as well.

Likely you'll be fine with one of the main line treatments. Surgery can be a good choice, but so can others.

Hang in there, your big problem now is what to do.

Andrew

You know I'm here for you every step of the way.

Okay, I have been slow updating this but I have been doing some reading and studying. Here is what I know from the biopsy:
3+4 = 7 Gleason score
12 cores with 2 positive (Rt. lateral Mid (60%) & Base (65%))
PSA was 9.73
Believe my clinical stage to be T1c

I have not decided what to do yet but I am considering either Robotic Radical Prostatectomy or a form of radiation, possibly ProstRcision. I have a consultation tomorrow with a radiologist at our local hospital. I have had some conversation with RCOG where they do ProstRcision, including a discussion with one of the doctors there. While I was expecting a big sell job I got nothing of the sort. I found him to be very straight up and did not try to convince me in any way. I am leaning that way due to the fact that I do not want to deal with surgery, the down time, the incontinence, etc. If I do have a consult regarding RRP I will likely meet with a doctor in Indy that is suppose to have thousands of surgeries under his belt. Dr. Michael Koch, I think is his name.

So tell me your thoughts, concerns, direction, etc. I have read plenty on RCOG and ProstRcision but the only negatives have come from people who have not actually gone there or had the treatment. I'm not saying that is the way I plan to go as I have more homework to do, but I am saying I would like to hear from people who have actually had ProstRcision and what their experience was, good or bad along with other treatments.

Thanks,

Fred

Hey Derf. Sorry about the dx but actually isn't too bad. With David's support you can get through this. I agree that radiation will serve you well just don't over do it. I consulted with RCOG and they do an excellent job. But I agree with TallAlle that you are a better candidate for mono therapy HDR or SbRT. My doc does mono HDR. Come see him. Are you in Ohio close to David and Leslie? If you need to you can stay at our house just 20 minutes from the treatment center

If it was a gleason 7, by definition it definitely has grade 3...the question is it a 3+4 or a 4+3...the doctor have this information..you might want to add this question to the list....Its impawtant to your treatment options... Ah internet forums...caveat emptor... its endemic to forums...just saying...

I checked a few times before I posted...but will go over the list and check it "twice"

Tall Allen said...

Questions not to ask:
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)

I'm trying to understand what you're saying here... But it sounds like the two options offered are the same thing.

Platy-

Those are opposing perspectives that some people (including myself) raise about AS.

In the first POV, it means that if you're a healthy 60 year old man and have a current life expectancy of, say, 30 years, and you get treated now, then you may have to live the next 30 years with incontinence and/or sexual side effects of treatment. So you may want to put off curative treatment as long as possible to live symptom-free as long as possible.

In the second POV, it means that quality-of-life outcomes tend to be better the younger one is when treated. Incontinence and impotence probabilities are lower for a 60 year old than for a 70 year old. So you may not want to put off curative treatment.

Another consideration is that at the pace of therapeutic technology development, better cures with lower side effects may become available if you can put off treatment. The development of radiation technologies in the past decade is a good example of this.

The other age-related consideration (not applicable to the OP) is that an 80 y.o. man with significant comorbidities (history of heart attack, stroke, diabetes, etc.)may choose not to have curative treatment at all if his life expectancy is less than 10 years. Something else is more likely to kill him than the prostate cancer. This is called "watchful waiting" rather than "active surveillance." It typically involves only palliative therapy at some point.

- Allen

Bololidat said...
platy...you can be treated right now suffer the S/E's for the rest of a long life with the slight possibility of mitigated S/E's for the rst of your life... or you can suffer zero s/e's but deal with the anxiety of knowing you have cancer that may or may not ever be a problem by going on AS...

OK that's the short form of the calculus as I understood it.

Yeah thats the ticket Platy...I knew my words could be put in mathematical equations...Compiler!!!???? tee hee!