Help.. my list of questions for urologist

My partner has an appointment Wednesday morning with his urologist to discuss his biopsy results and treatment options. I will not be accompanying him for a couple reasons so I've tried to put together a list of questions for him to get answers to. I've been the one doing most the research but I'm still confused (more like overwhelmed) and was wondering if you more experience PCers could review my list and make suggestions of questions to add or things I should remove because they aren't applicable or they are duplication?

I have a whole other set of questions for treatment options but figure they would be best asked to the surgeon and/or radiation oncologists if we get to those. I'm personally hoping and praying for AS based on what little information he was given two weeks ago when he went to urologist for the biopsy results and was told one of twelve cores was cancerous, a 6 on scale of 1-10 and given 100 Q&A on PC to read and come back in two weeks to discuss treatment. (Ok, so my mouth is one reason I will not be attending because I'd most likely get us both kicked out.. what kind of doctor does that?? Never even explained that a 6 on the scale was the best we could hope for if we were on the scale..sigh).


General Questions:

Do I have adenocarcinoma? ______ Yes ______ No
If not, what type of cancer do I have?
How large is my prostate cancer?
Has my prostate cancer spread beyond my prostate? _______ Yes ______No
Was there evidence of perineural invasion? ______Yes ______No
How likely is my cancer to spread?
Am I a candidate for any of the following genetic testing to identify aggressiveness of my cancer?
1. Prolaris (Myriad) ________ Yes ________ No (according to internet Dr. Niditch is a provider)
2. Oncotype DX (Genomic) ________ Yes ________ No
3. 4KScore (Opko) ______ Yes ______ No
4. Decipher Biopsy ______Yes _______No
If not.. Why not?
If I’m a candidate for further testing for aggressiveness will my insurance cover it? ______Yes ______No
What is my Gleason score? _____ 6 (3+3) Other:________________
What stage is my cancer? ___T1 ___T1a ___T1b ___T1c ___T2 ___T2a ___T2b ___ T2c
___T3 ___T3a ___T3b ___T4
What is my cancer grade? ___ 1 ___2 ___3 ___4 ___5
What part of prostate was cancerous core from? ______Right _____Left _____Upper _____Center ____ Lower
How much of the cancerous core was made up of cancer? ______%
How large is my prostate?
What is my prostate-specific antigen (PSA) level?
What is my free PSA? (lower the percentage the higher the possibility of cancer)
Is my cancer ____very low risk ____ low risk ____ medium risk ____ high risk ____ very high risk?
What are my chances of survival based on my cancer as you see it?
If additional testing is needed would you recommend any of the following?
Telsa 3 Endorectal MRI? _____Yes _____No
MRI Contrast? ______Yes _____No
Choline PetScan? _____Yes _____No
Color Doppler Ultrasound? _____Yes _____No


Which of the following treatment options would you recommend for me, if needed?
1. Active Surveillance (AS)? _____Yes _____No
Radiation? _____Yes _____No
2. Brachytherapy/IRT (seed implants)? _____Yes _____No
A. Low Dose Rate (LDR) Permanent – _____Yes _____No
B. High Dose Rate (HDR) Temporary – _____Yes _____No
3. External Beam Radiotherapy (EBRT)? _____Yes _____No
A. Three Dimensional Conformal Radiation Therapy (3D-CRT)? _____Yes _____No
B. Image Guided Radiation Therapy (IGRT)? _____Yes _____No
C. Stereotactic Body Radiation Therapy (SBRT)/Cyberknife? _____Yes _____No
D. Intensity Modulated Radiation Therapy (IMRT)? _____Yes _____No
E. Proton Beam Radiation Therapy? _____Yes _____No
4. Surgery? _____Yes _____No
A. Radical Retro Pubic Prostatectomy? _____Yes _____No
B. Radical Perineal Prostatectomy? ______Yes _____No
C. Laproscopic Radical Prostatectomy (LRP)? _____Yes _____No
D. Robotic Radical Prostatectomy (DaVinci)? _____Yes _____No
5. Cryotherapy/cryosurgery? _____Yes _____No
6. High Intensity Focused Ultraound (HIFU)? _____Yes _____No
7. Chemotherapy? _____Yes _____No
8. Immunotherapy/Vaccine Therapy? _____Yes _____No
Is there one treatment option you think is best for me?
Do I need cancer treatment right away, or is it possible to wait and see if the cancer grows? ____Now _____Wait
Is Active Surveillance (AS) an option for me? ______Yes ______No
If not, why not?
If I do radiation will hormone therapy be required? _____Yes _____No
Would hormone therapy continue after radiation therapy ends? ______Yes _____No

Should I see a specialist? _____Yes ______No
What will that cost, and will my insurance cover it?
Should I get a second opinion? _____Yes ______No
Who would you recommend?
Would insurance cover it? _____Yes _____No
Should I get a second opinion on the biopsy from Dr. Epstein at John Hopkins? ______Yes _____No
How would I do that?
Would insurance pay for it?
Can I get a copy of my pathology report today to take with me?


Active Surviellance (AS) Questions:

Would an MRI or PSA density test be beneficial to determine if AS is suitable for me? _____Yes _____No
If I choose AS as my treatment:
How often will I have my PSA checked?
Who will check and give me results?
How often will I see the doctor?
How often will I have digital rectal exam (DRE)?
Will I need more biopsies? _____Yes _____No How often?
Can cancer cells spread outside of prostate during a biopsy? _____Yes _____No
Would color doppler scans be better than biopsies? _____Yes _____No
How quickly would my PSA need to rise for you to recommend treatment?
What treatments can I have if my cancer grows?

joyf00,
You sure have a ton of questions which is good, a bunch more than we had. I just let the docs tell me what was going on and then we made decisions from there. Take things one step at a time. Try and remain clam and take notes. My wife is my note taker, I couldn't remember most of what I was told. And make your decisions after knowing what facts you get. Also ask about side effects.
Good luck to him wednesday

I took in a written list of questions in and was writing the answers down. Near the end the doc asked to see my list and then made extra notes, marked up the pathology report where it answered my questions plus noted a couple of books to read and a link to his webpage that had more info.

Most docs understand that you can't remember everything and are willing to help.

Last time I went with my brother to the doctor, we wanted to write stuff down but had forgotten to bring in paper, the doc wrote up notes for us on the computer in the exam room and printed a copy for us to take home.

Ask, you'll get.
Andrew

Be careful about asking a urologist questions outside of his specialty - he usually won't know, but will have opinions nevertheless. Focus on what he does know - you can learn a lot. Use the questions in the sticky.

The urologist will go over the biopsy report. That will answer all questions about where the cancer is and how much was found, and its grade. There is absolutely no need for any additional tests right now. Those genetic tests you mentioned are very expensive and are only used if findings are equivocal (4KScore is only used pre-biopsy). The important thing is his risk level (low, intermediate, or high) - that's what determines his potential treatments.

The urologist will probably take him through a nomogram like the one below that shows the odds that surgery will be successful. (If not, he can look at it himself after the meeting).

/www.mskcc.org/nomograms/prostate/pre-op

Some tips:

• Print out the questions with spaces between them to take notes about the answers.
• It is always helpful to bring someone with you - you'll miss half of what is said, and hopefully the other person won't miss the same half.
• Some patients like to record the interview. I've never found that to be helpful. I think taking notes is better.
• Debrief immediately afterwards while it is fresh in your minds
• Type up your notes and keep them all together with your medical reports in a folder on your computer.
• Write a thank you letter, summarizing what you learned and the next steps.
• Keep your own copies (preferably online) of biopsy reports and everything else. It makes it much easier to forward the data the next time you meet with a specialist.

Joy - A couple of things to help.
1. Can you create a "signature" of your partner's stats to show at the bottom of your posts? That will make it easier for respondents to keep their comments on point/target without having to look back to your earlier posts to know his status.
2. I think Tall Allen puts it very well when he advises patients not to expect their urologist (a surgeon) to have vast knowledge about non-surgical treatments. Some are better versed than others, but some, as Allen says, have opinions based upon out-of-date information and which may be potentially misleading.

My own humble advice would be to try to identify ALL of the treatments that would be applicable to his cancer, learn about them and then try to choose which is best for both of you. Try not to decide until you have learned about all of them, lest you commit to something and then find out that there was another treatment you liked better. The "bad" example of this would be the man with a small amount of G6 cancer who rushes off to surgery (or radiation), has major side effects, but finds out that Active Surveillance would have been appropriate for him only after he has the treatment.