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Questions for my initial meeting after biopsy

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Posted 4/8/2011 2:13 PM (GMT 0)
I have my first meeting with the urologist next Thursday. I'm getting a list of questions for him. I have the usual ones; options/side effects/recommendations for a second opinion/get a copy of my pathology report and CT scan/what is my staging level...

What other questions should I be asking? I don't want to walk away from this meeting and think "Oh I should have asked..."

Also when I asked about my staging level on the phone after my biopsy they said the doctor will give that to you when you meet with him and they have to wait for the results of the CT scan. Is that typical? Does the pathologist normally assign that? Maybe I'm being paranoid, but I fell like they may be holding something back and that is why they wanted the CT scan. I'm very nervous about this meeting.
Posted 4/8/2011 2:19 PM (GMT 0)
Yup, pathologist report will include the key info from the biopsy...Gleason score and staging. But, since the doctor prescribed scans, he will want to get those results in-hand first before giving the final word. It is highly unlikely that anything will be seen in the scans...it basically just doesn't happen when the PC is found very early like your indicators so far have reflected.
Posted 4/8/2011 2:27 PM (GMT 0)
your urologist will be reading the pathology to you as prepared by a pathologist.

There is some subjectivity involved with. Mine, for instance, came back different from two different pathologists. One a gleason 6, the other a gleaosn 7 ( 3+4).

The urologist has to wait to get these.
Posted 4/8/2011 2:44 PM (GMT 0)
I wouldn't worry too much. with a gleason 6 I doubt anything will come of the ct scans. In fact it sounds more like a defensive legal procedure than one warranted medically. Your numbers don't justify it.

As a urologist he's a surgeon and you should realize he will naturally push radical surgery on you. Ask his experience be it open robotic or both. Also ask him what happens if you do nothing. How much time does he estimate you have? I asked this of my first urologist who did my initial biopsy. He was surprised and actually said no one had ever asked him that before. Which I found hard to believe and then he guessed 7 years. By then I knew I was headed elsewhere and later I see his answer as really being ridiculous with my numbers. Remember you are also interviewing him for possible future treatment. Ask him the ed and continent rates of his patients. A doctor will reveal how honest he is by those numbers. Then also ask him what does he consider as being continent. Some doctors judge you're continent if you're doing a pad a day. I think most men would not consider that to be although it sure is better than those poor souls using like 8+ pads daily. Also do the same about ED. Although if you're like most guys the incontinent effect is the most feared one. Whatever you decide be sure to take your time talk to a radiologist, maybe an oncologist, and maybe another urologist recommended by someone you know or who knows of the doctors in your area. Be it from someone here or a local support group. I never joined a support group but some here do and swear by them.

Did you watch the video links I bumped up for you? They alone give you a good basee of information to draw from and will help you in this meeting by not going there as clueless as most of us were initially. Good luck.
Posted 4/8/2011 3:19 PM (GMT 0)
Ask him if you can record the conversation. If not take notes on a notepad. Ask how many surgeries he has done. Ask about any complications he has had with any of them. When we asked the uro that did my biopsy how many robotic prostatectomies he had done he said 6. You could hear the car doors slamming and the tires screeching to get away from him as fast as possible.

Make sure you get him to send your biopsy slides out to get a second opinion from Dr. Epstein at Johns Hopkins or another highly respected pathologist.
Posted 4/8/2011 3:41 PM (GMT 0)
Zig, I did watch the three videos. Thanks. I hope I have options to consider and if I do, I want to look at all of them and think them over. I'm really looking for questions to ask at this point.

I do want to ask the question "What if I do nothing". I know another 10 years sounds like a long time, but when I look back on the last ten and see how quickly they evaporated, I wonder if I had seven GOOD years to look forward to if I did nothing or 15 years with problems from which ever treatment I chose (and it seems as if there are potential problems and side effects from both surgery or radiation and I don't really want to start that discussion again), what would I choose? We are not going to live forever no matter what we do and when we die it will be now when it happens - not some time in the future. There will always be more life events (graduations, births, vacations) that we could wish to be alive for, but at some point we will have seen our last event. I think I have to enjoy what time I have left no matter how long that is.
Posted 4/8/2011 4:03 PM (GMT 0)
During the meeting ask what the doc thinks about your rapid PSA rise since October of last year - AS can be a good strategy, but the rate at which your PSA is moving up is troubling. 
Posted 4/8/2011 4:12 PM (GMT 0)

Gleason 6 said...
Zig, I did watch the three videos. Thanks. I hope I have options to consider and if I do, I want to look at all of them and think them over. I'm really looking for questions to ask at this point.

I do want to ask the question "What if I do nothing". I know another 10 years sounds like a long time, but when I look back on the last ten and see how quickly they evaporated, I wonder if I had seven GOOD years to look forward to if I did nothing or 15 years with problems from which ever treatment I chose (and it seems as if there are potential problems and side effects from both surgery or radiation and I don't really want to start that discussion again), what would I choose? We are not going to live forever no matter what we do and when we die it will be now when it happens - not some time in the future. There will always be more life events (graduations, births, vacations) that we could wish to be alive for, but at some point we will have seen our last event. I think I have to enjoy what time I have left no matter how long that is.

That's the great quandary. One must decide the priorities of possible added life longevity and the quality of that life. I suggest you ask the how much time you have left more to judge the doctor by than really expect a set in stone solid answer. It showed mine to be really hungry for patients or not all that experienced. Of course this would be so much easier if you knew what after effects to expect and for how long before you had to make a decision but that's really a crap shoot. Through the years you'd see guys here with high numbers after treatment be just fine and then someone young with low risk numbers have permanent incontinence and ed go to slings, trimix shots ...etc all that afterward. You just don't know. After all that you can still go through successful treatment only to be hit by a bus a day later or have a heart disease appear soon after.

Bottom line take your time deciding and if a treatment decision is made move ahead full throttle without looking back. .
Posted 4/8/2011 4:18 PM (GMT 0)
My suggestion:

1. PSA: history, velocity, Free vs Total vs size & volume of prostate. (Some said rapid increase, etc. are a possible indication of aggressiveness of cancer)

2. Biopsy: How many cores/samples taken; # of cores have cancer, what percentage have cancer; location of the cores that are positive, apex? posterior? anterior? transitional zone? (Some said where the cancers are located affect treatment selection)

3. Pathology Report: Gleason score, staging, how extensive, any PIN, etc. Also, second opinion of pathology report. (Again affect treatment selection)

4. Treatment Options: Explain the big three - AS, Radiation & Surgery, what are his protocols for AS, also, other treatment methods.

5. Names of Radiation Oncologists for you to talk to.

6. His recommendation & why

7. If he does surgery, open or robotic, how many total, how many this last year, does he keep statistics, incontinence & ED complication rate, positive margin rate, etc. Ask for patient references.
Posted 4/8/2011 4:29 PM (GMT 0)
Great questions Newporter. Thanks.

Yes I am worried about my rapidly rising PSA. I'd like to have it tested again to see what it is now, but don't know if they can get an accurate reading this soon after a biopsy. I seem to be losing weight also (or not being able to gain) and that concerns me.
Posted 4/8/2011 4:51 PM (GMT 0)
ask him:  "what would you do if you were in my shoes?"

i took three family members with me to ask questions and to size up the doctor.  good luck.

ed

 

Posted 4/8/2011 5:02 PM (GMT 0)
Since your Gleason is low and only have few positive cores, there is a possibility you have a combination of cancer + prostatitis. My own post op pathology report had a line stating: Indication of chronic inflammation which to me could explain my high PSA and low Gleason. Sometimes biopsy will show that also but you may need a second pathologist to read your biopsy.

Immediately after biopsy, PSA tends to go up, so, your doctor may ask you to wait.

Want to caution you that I am not a doctor and these are just opinions only.
Posted 4/8/2011 5:58 PM (GMT 0)
I’ll add two comments.   (1)   Regarding your rising PSA, Newporter’s comment mirrors my note to you in a separate thread where I wrote: ·          By the way, your PSA rise is somewhat suspicious of a combined affect of PC and prostate infection, which can occur simultaneously.  Did you doctor mention this, or attempt to treat you with antibiotics.  To a certain degree, the point is somewhat moot because of your biopsy findings, but future use of your PSA values will be much less meaningful if the values are convoluted. Everything certainly seems to indicate that you should be in no rush whatsoever to sort-out whether your PSA rise might have been driven by other causes.   Since you are indicating that AS is a possibility with you, it will be important to get a firmer understanding of causes.   (2)   Your choice of wording might be important.   If you want to be sure that your doctor understands you are serious about exploring AS, he will want to know that you understand AS is NOT “ doing nothing .”   Those who are most successful with long term AS undertake lifestyle modifications in order to sustain this success.   Essentially all of the AS programs reported in the medical literature include elements of i) prostate-healthy dieting, ii) exercise and iii) stress reduction.   We could probably all benefit from these steps, but once one gets a cancer diagnosis, the commitment to these becomes more important…and more beneficial. If you wanted to read more about some of the best known AS programs who publish results in the literature, here are some key names/words that you can search on:   H. Ballentine Carter, MD at Johns Hopkins; Laurence (Larry) Klotz, MD at University of Toronto; Peter Carroll, MD at Univ of California at San Francisco. If you really wanted to talk intelligently about the AS option with your doctor and let him know   you are serious about lifestyle changes, discuss this study by Peter Carroll from UCSF about men with biopsy-confirmed low-risk prostate cancer who were split into 2-groups; half undertook lifestyle changes and half “did nothing.”   [ LINK to the Journal of Urology abstract, and LINK to a more easy-to-read article of the same study.]   A year later, the half that “did nothing” had their average PSA increase by a very predictable amount, and the group with lifestyle changes had their average PSA decrease.   Do you see my point…?   ”Doing nothing” won’t optimize the success of AS. Also, keep in mind that AS is an appropriate path for many (not all) men, but it is not fully/widely embraced yet by all doctors, especially those in local group practices who tend to slightly lag on the latest info.   Some men here on AS report that they have had to search to find a urologist who would support their decision to go the AS route.   Please note that I’m not urging you to go the AS route, nor am I a doctor; rather, my goal is to help you more fully understand this underutilized option so that you can make your own educated decision.  You have my support no matter what decision you make!     best wishes…     edit:   fixed typo Post Edited (Casey59) : 4/8/2011 12:05:14 PM (GMT-6)
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