The Phone Call

Bob - welcome to the site that no one wants to join...

Can you give us some details on your history - PSA test etc....

Ring, ring...

"hello (me)"

"Yes, this is Dr M's  office - please hold, he needs to talk with you..."

That's what a positive biopsy usually sounds like...

Hi Bobray95, and welcome. Glad you have found some online info sources; in my response, I’ll give some guidance on things to do—and things NOT to do—after getting a prostate cancer diagnosis. You’ve probably already learned this, but in case you haven’t you should know that there are many different variants of prostate cancer (PC), and the most frequently occurring variants are not highly aggressive.   While there is no precise way to easily differentiate them with a simple test (which is a sorely needed gap between what currently have with the PSA test and what we need), we instead use the best-available indicators to classify the risks of every case before proceeding to any treatment decisions.    So the one guidance which is absolutely universal is to understand the risk characteristics of your case BEFORE making any treatment decision . There are several methods of risk stratification, but the two most widely used are the D’Amico and the NCCN guidelines.   Dr Anthony D’Amico has shown that it is possible to estimate the biological aggressiveness of PC into Low , Medium and High Risk categories which reflect the risk of aggressiveness, cancer growth and spread.   See THIS short article with a complete descript ion of the D’Amico risk categories.   The National Comprehensive Cancer Network (NCCN) recently (2010) expanded the definition of the D’Amico Low Risk category to also include a fourth category called the Very Low Risk category which describes the conditions of a significant number of newly diagnosed men.   Patients in the Very Low Risk  category are listed as ( LINK ): having a stage T1c tumor having a Gleason score of 6 or below having a PSA level below 10 ng/mL having fewer than 3 positive biopsy cores (with < 50% cancer in each) having a PSA density below 0.15 ng/mL per gram. So, while I agree that Steve n Dallas’s inquiry about your case history is relevant, a more specific question to an empowered, educated patient that you aspire to be would be:   “What are your case characteristics, and what is your case risk category?”     Want some more smart reading material?   Here is a LINK to a page published by the Prostate Cancer Institute with the title, “I Have Prostate Cancer, Now What?”   (This article was written for you , and thousands of others just like you, and me, and others here.)  One of the most important steps the PCI says in this article is to make immediate lifestyle changes .   Diet and exercise have been repeatedly shown to be the most important modifiable determinants of cancer risk .   A smart thing to do, then, is to “stack the odds in your own favor” for the best possible outcome by following the PCI guidance because once you have a PC diagnosis—no matter what risk level—you will be dealing with it one way or the other for the rest of your life.     Here’s a good quote from a recent newspaper article ( LINK ) which summarizes, together, the two points I’ve made in this reply: What if you get a scary diagnosis? Don’t rush to radical surgery. Get a second and maybe third opinion. Up to 40 percent of guys with early prostate cancer can opt for “active surveillance,” which monitors the cancer with regular PSAs, prostate exams and biopsies. If trouble arises, treatment starts. We love this approach because it lets you make healthy changes that are proven to keep PSA levels lower even after a cancer diagnosis. The changes: more fruit and veggies, more workouts, more meditation; no red meat, no added sugars and no syrups.     best wishes…   edit:   typo Post Edited (Casey59) : 11/15/2011 2:44:09 PM (GMT-7)

Hello and welcome to HW, Bob

Sorry you need to join our club here, but glad you found us.

Some details of your biopsy would help us understand where you are at, i.e, Gleason Score, Number of positive cores, per cent of cancer per core, staging if any, etc.

Please keep us well posted.

David in SC

Ah, the famous  THE PHONE CALL.

I suspect every patient knows exactly what that means!!

I knew at that moment that my life had changed!

Mel

I'm not sure there really is an optimal way to be told. My Urologist doesn't (so he says anyway) give any biopsy results, positive or negative over the phone and sets up the follow-up appointment at the same time he schedules the biopsy itself. Makes sense to me to avoid one of those "the doctor wants to see you in the office this Friday etc..." calls.

Interesting how people react to that initial diagnosis. A lot of it depends on your expectations. Thanks to Dr. Google, I was preparing myself for the possibility of hearing something a lot worse at my biopsy follow-up appointment, so when I found out the cancer I have was considered very low risk and very treatable, I was actually a bit relieved. Of course that didn't mean I was going to hear a whole lot of what my Doc said after that haha.

BTW, for anyone who hasn't gotten to the point of hearing the results yet, I'd recommend recording that meeting. I didn't tell my doc I was recording the conversation, but I had my iPhone in my lap with a dictation app going. VERY helpful going back and re-listening since I must've missed at least 75% of what he originally told me.

I'm not sure there really is an optimal way to be told. My Urologist doesn't (so he says anyway) give any biopsy results, positive or negative over the phone and sets up the follow-up appointment at the same time he schedules the biopsy itself. Makes sense to me to avoid one of those "the doctor wants to see you in the office this Friday etc..." calls. 

This is exactly what was done for my husband.  The slides, brochures, and an hour discussion with us made things better than the dreaded phone call.

I am glad that the nurse did call me ahead of time. This has given me the opportunity to do plenty of reading and getting familiar with the subject. When I go in on the 21st I will know a little bit about what the Urologist is telling me. This way the shock factor has gotten over somewhat. If I walked in his office and he said "you have cancer" I wouldn't have heard anything else he said! I want to again thank all of you guys and gals who have helped me understand a little bit more of what I'm facing in the coming months.

My diagnosis never involved a phone call. After my 3rd biopsy, I had an appointment with my uro about 3 days later at his office. It was scheduled for 4pm. I arrived at an empty waiting room, and sat and waited. By 5pm, even most of the staff was leaving, I was told that the doctor was running late on an emergency surgery. It was a very long hour sitting alone. He came and got me around 530pm, as the last office person was leaving. We went back to a small conference room and sat down.

As gently as he could, he broke the news to me, and went over the most basic of options ahead, and he did cover them all fairly and equally. He was surprised there was as much cancer as the biopsy was showing.

We had to shut the meeting down quickly, as he had a meeting that he was already late for, we agreed to meet a week later, with my wife this time, when we could go over things in depth.

He walked me out to the car in the dark and left. I sat there in my car, and tried to tell my wife the news, but I broke down and cried my eyes out. Had to hang up the phone, and all I can say, it was a tough drive back home. Fortunately, by the time I got home, I had composed myself, and was able to talk about my new situation without breaking down.

david in sc

Purgatory said...
My diagnosis never involved a phone call. After my 3rd biopsy, I had an appointment with my uro about 3 days later at his office. It was scheduled for 4pm. I arrived at an empty waiting room, and sat and waited. By 5pm, even most of the staff was leaving, I was told that the doctor was running late on an emergency surgery. It was a very long hour sitting alone. He came and got me around 530pm, as the last office person was leaving. We went back to a small conference room and sat down.

As gently as he could, he broke the news to me, and went over the most basic of options ahead, and he did cover them all fairly and equally. He was surprised there was as much cancer as the biopsy was showing.

We had to shut the meeting down quickly, as he had a meeting that he was already late for, we agreed to meet a week later, with my wife this time, when we could go over things in depth.

He walked me out to the car in the dark and left. I sat there in my car, and tried to tell my wife the news, but I broke down and cried my eyes out. Had to hang up the phone, and all I can say, it was a tough drive back home. Fortunately, by the time I got home, I had composed myself, and was able to talk about my new situation without breaking down.

david in sc

That's heart warming, Purg. I remember not being able to get the words out of my mouth. I would try and nothing would come out. Sounds that did come out were screeching. I wasn't able to compose myself while discussing it for a few days. telling the kids whose only point of reference was their aunt dying of cancer was also horrible.