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Biopsy Results - what questions?

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Posted 12/29/2017 8:17 AM (GMT -5)
I have read a few threads so far and the amount of content here is impressive. I would like to tap into this forum to help me with making informed decisions as things unfold.

As background I am 60 years old and live in the Lancaster, PA area. I had a physical the end of Nov 2017 and my PSA was 5.2. All the previous yearly results were 1.0 to 1.2 over the past 10 or so years. I saw a Urologist in early Dec and he completed a digital exam and was concerned about a area of hardness and mentioned it could be calcification but a biopsy was the recommended next step. I had the biopsy on Tue at which time they took 12 samples. I am now awaiting the results.

Of course once I get the results I will have more specific information and in the meantime I will continue to read the forum.

My question at this time is when I get the phone call with my test results what they will communicate to me and what additional questions should I ask so that I am properly informed with information to move forward with more research and meaningful questions?

Thank you in advance for you kind help and support.
Posted 12/29/2017 8:25 AM (GMT -5)
I would sit down with the physician and have him explain your biopsy results and not do this over the phone (unless no cancer was found.) If cancer was found, get a paper copy of your results. My primary care doc found a hard spot during my DRE and a urologist concurred. And the rest as they say is history.

When you get your results, let us know.
Posted 12/29/2017 8:01 PM (GMT -5)
Hi Runner,
I certainly hope your Biopsy comes back negative for cancer. A rise in PSA from the 1 range to 5 range
in a year is pretty quick for Prostate Cancer and so maybe it could be due to an infection.

If the Biopsy is positive for cancer you definetly want to meet in person with the Urologist and get him to explain the results and draw a diagram illustrating the location of the 12 sample cores from the prostate and where the positive cores are. There will be a 'Gleason Score" with each positive cancer core sample that is a rating of the aggressiveness/seriousness of the cancer. There will likely be additional comments on the Biopsy report concerning the cancer and you want to ask questions about anything you do not understand. Make sure to get a copy of the Biopsy Report.

If your Biopsy is ppsitive for cancer, most get a second opinion review of the Biopsy Slides primarily to make sure there is a second opinion rewiew of the "Gleason Score". Most persons on this forum get the second opinion from Dr. Epstein at John Hopkins.

There are two permanent threads at the top of this Prostate Forum that have a lot of great information for those that are new and I recommend you take time to read thru them if you have not done so.

Note that if your Biopsy is negative for cancer that does not necessarily mean you do not have cancer but you will want to begin investigating the cause of the high PSA probably first by getting a repeat PSA test done to include free PSA%.

Good luck and let us know what the Biopsy Results are.
Posted 12/29/2017 8:58 PM (GMT -5)
If your URO gives you a PCa diagnosis over the phone..................get another URO. Not that the DX was wrong just that he/she has no sense of what YOU are dealing with. Other than that wait for the results, get back to us with ALL of the details and we will help. Others are more knowledgeable than me with specifics.

May all beings be well

Roger
Posted 12/29/2017 9:44 PM (GMT -5)

three 5's and a jack said...
If your URO gives you a PCa diagnosis over the phone..................get another URO. Not that the DX was wrong just that he/she has no sense of what YOU are dealing with. ...

I got my Very Bad News by a phone call. It took my breath away, left me shaking, barely able to drive home from work. I'd rather have been called to the uro's office the next morning, with my wife, to talk about it. I knew what the numbers meant, and I was quite shaken. Then I had to drive home, mentally rehearsing what and how I was going to tell my best friend, my life-partner, the results I had just heard.

It was awful. Being told in person, at the office, would be far better. It occurred to me later that my uro may have been a bit chicken, though he must routinely give people bad news. Mine was worse than most to be sure, but still...
Posted 12/30/2017 3:53 PM (GMT -5)
Questions, if positive:
1. How many cores were positive for cancer?
2. What grade cancer was found in each?
3. What percent of each was cancerous?
4. Does this need to be treated?
5. How likely is it that the cancer has moved beyond the prostate gland?
6. Can you recommend a good radiation oncologist for me to consult?
7. How quickly do you think I need to act?

Research for you to do in advance: Learn the Gleason Score system.
Learn some about the major treatments -- radiation and surgery.

Major caution: if you are positive for cancer, do not allow the urologist to rush you into surgery. It is important to take some time to think and learn about treatment options.

With some luck none of this will be needed. Even though it is likely you will get a negative test result, I think it's important to be knowledgeable going in to the meeting, because then, if you get a positive result, what the doc says will make more sense.
Posted 12/30/2017 4:59 PM (GMT -5)
I got my biopsy results over the phone from my urologist. Prior to the biopsy he had prepared me for the possibility of cancer, saying there was a 50/50 chance. So I wasn't shocked or surprised. He called because he had to go out of town for a week, and didn't want me to be wondering. Anyway, I saw him when he returned and spent about an hour with him reviewing the results and first steps.

Every situation is different. A good doctor should know how to handle the communication of the results.

Good luck.
Posted 12/30/2017 5:30 PM (GMT -5)
My list of questions to go with a biopsy result....

1. How many positive cores?
2. Which cores were positive (right-left, upper-medial-lower)
3. Gleason scores on the positive cores
4. % positive in the core

If you're an very high risk category (G9 or lots of G8) it's likely they will want to start you on hormone therapy right away to knock it in the head while a plan is made. If you're in a low or intermediate risk category (G6 or G7) then you DO have time to make a rational and thoughtful plan of attack. Do not, repeat, do not let your diagnosing uro schedule you for immediate surgery.

If you come back positive, you will want to get a second opinion on your slides--Johns Hopkins is the place, and your Uro will know how to make it happen.

Beyond that, if treatment is needed (and it may not be), you'll want to get yourself plugged in to the best hospital network you can find. If you're in Lancaster, Philly isn't all that far...and both UPenn and Temple (Fox Chase) have world class doctors.
Posted 12/31/2017 5:30 AM (GMT -5)
I got the cancer news in person and still was in shock for some time. So I am not sure how it is delivered makes that much difference. I needed to get through the shock so my rational brain could engage in dialog that was meaningful. Above there are great questions. When/if you have a sit down bring someone with you as you may not hear all the details, I didn't I wish you peace. Denis
Posted 12/31/2017 7:31 AM (GMT -5)

Subdenis said...
I got the cancer news in person and still was in shock for some time. So I am not sure how it is delivered makes that much difference. I needed to get through the shock so my rational brain could engage in dialog that was meaningful. Denis

Hello Runner and welcome. Just get the basics (as the guys have indicated) when you are first informed and then you can get composed to come back with more educated questions. I agree with Denis that it doesn't matter too much how the news is delivered, especially if you are expecting the phone call. For me, I had told the doc to CALL as soon as the results were available and to speak with either me or my wife. It turns out I was out so she got the call and then calmly delivered the news to me. My urologist set up an appointment for the next day to discuss the outcome in detail. It turned out that time was welcomed and needed; we had a chance to process the info and then came into the appointment with some basic knowledge of the disease and prepared to discuss the meaning of the findings as well as some preliminary discussions of treatment options.

If the news is cancer get the info and come back here with the data. We have smart guys and gals who will help you understand it, can give you good questions for the follow up meeting and will help you understand your options. In any case don't panic and PCa is slow growing and even if you are diagnosed there is a good chance of a cure.

Good luck.

Jim
Posted 12/31/2017 7:48 AM (GMT -5)
Thank you for all the responses and good information/suggestions. I am not so concerned with how the information is delivered as I tend to look at these things more logically than emotionally. Of course I would prefer a negative result but with the information presented here I am prepared to know what to ask if the test is positive for Ca. I will come back and post the results and draw upon those that have already walked the path for further support.

I am so happy that I stumbled upon this group. The kindness to share information here is so helpful for someone whom is new and does not know what they don't know about this disease.

Thank you and I wish everyone the best for the new year 2018.

John
Posted 12/31/2017 9:07 AM (GMT -5)
John,

One thing that I found helpful in the days after 'the call' was to get one of those big accordian file folders to put all the paper in. Get hard copies of everything. Add a small notebook and pen and take it to all appointments, to take notes and have written questions in place.

What my diagnosis URO did, is that after the nurse called with the results, we made an appointment a couple of weeks later where both my wife and I could be present. He made the appointment 'last of the day', and after he sent everyone home, he sat with us and gave us as much time as we needed to ask questions and develop a plan for the future consults. I realize (now) just how rare that was. He clearly told us what he could do (open surgery only), and freely offered referrals to both a robotic surgeon and a radiation team. He also clearly stated that I had 6 months to make a decision.
Posted 1/11/2018 9:20 AM (GMT -5)
I received the phone call with the results this morning.

Negative for Ca
Some inflamation is evident.

This is good news but based upon all the helpful suggestions in this thread and the reading I did on the forum I was prepared for the worst knowing that even if positive for Ca there are many very successful treatment options and it is not a automatic death sentence.

Once again thank you very much to all and my best wishes and prayers to all those that continue to fight the battle with this disease.

John
Posted 1/11/2018 9:26 AM (GMT -5)
Great news! Thanks for sharing it.
Posted 1/11/2018 9:45 AM (GMT -5)
ABSOLUTELY FANTASTIC!!!!!!!!!!!!!!!!!!

Stay watchful, be healthy and enjoy your life. I am glad that you don't NEED to be a member.

Roger

May all have news as good as you Runner!
Posted 1/11/2018 10:35 AM (GMT -5)
I'm with 3 jacks and a 5 ooops the other way around! turn FANTASTIC NEWS!
Posted 1/11/2018 5:11 PM (GMT -5)
Great news.

My uro told me that his associate would call in the results as he was going out of town. So I was fine with this and got the call about 2 days later. The associate told me to schedule a cancer consult with my regular uro. I saw my uro in about 2 weeks and he spent a good 2 - 2.5 hrs on a Friday afternoon with us.
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