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How were you given the news you had PC?

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Posted 10/11/2014 11:25 PM (GMT 0)
Before my biopsy my PSA doubled and I had a palpable lump. I was 100% certain I'd get the news I had prostate cancer. I thought is was very thoughtful when my Urologist asked me where I'd like to get the results of my biopsy. My Urologist's office is a 30 mile drive from my home.

I decided I wanted to get the news in the comfort and safety of my own home. Additionally, I didn't want to get behind the wheel shell shocked. I was surprised to get a phone call at 9am on a Sunday morning. The call lasted less than 10 minutes. The only thing I wanted to know at the time was my Gleason Scores. At the time I thought I received the news the where I wanted to receive it and I was satisfied with the ways things went.

Three years later I believe those who are about to receive the news they have prostate cancer should have access to either their Dr or another Health Care provider who can explain what their Gleason Score means and what further tests will be necessary.

I also believe access to a Medical Social Worker or another Health Care Professional would be helpful in order to cope with emotional component of receiving the devastating news you have cancer. Additionally, the benefits of meeting with others further along in this journey should be explained and a referral to on-line and/or peer to peer support should be offered as well.

I wonder if others would be willing to share how they received the news about PC.
Posted 10/12/2014 12:30 AM (GMT 0)
When I had my biopsy, we didn't talk about how the results would be delivered. To my surprise, my uro onc called me at work the day after the biopsy. He said unfortunately it did indicate cancer (not a big surprise), and then laid out some pretty ugly numbers (BIG surprise), that I knew were ugly. We did spend some time talking about upcoming tests that we would do so we could better determine treatment options. That day, time, conference room, conversation are etched in my memory in exquisite detail; a "flashbulb" memory.

It was the most shocking news I've ever received and I don't know if it would have been any better in his office, but he did take some time to calm me down a little bit by staying solution oriented. That's one of the best things about this forum, by the way. People here help us keep our feet on the ground by having a generally positive approach to a bad situation.
Posted 10/12/2014 12:30 AM (GMT 0)
At the time of the biopsy, they made a telephone appointment for me with the doctor for 10 days later (the worst case time for getting the results). The doctor was to call then. It was made clear to me that the doctor would only tell me if the test was positive or negative for PC during the call. If it came back positive, the doctor would arrange for me to get an appointment at the cancer clinic where I'd meeting with a treatment team. I'd be given all the details then.

As it turned out, my doctor got the results earlier than expected and he went ahead and called before the appointment time since it was positive. He'd already called the cancer clinic and they called about an hour later to schedule a followup appointment. My first appointment was with a surgeon, an RO, an RN who did case coordination and education.

Altogether, I was very happy with how my doctor and healthcare system handled my case and how I got told. The offered me counseling and a support group if I wanted, but I declined as I normally get that kind of emotional support from my church (pastor, men's group, etc) and more importantly from my wife without whose support I wouldn't have made it through the following months.
Posted 10/12/2014 12:35 AM (GMT 0)
For me, after my 3rd prostate biopsy, I was all alone in the urologist office late one afternoon. Last patient had long come and gone, most of the office staff checked out for the day. Doctor was running late, so it was just me and him in a small conference room when he told me. I will never forget that day.

We kept the conversation short, due to the time. Went out to my car, called my wife at her work, and then fell apart on the phone.

Being that t he PC dx was my 4th major cancer dx, it was really hard to take. Yet, this was the easy part, the first step in what has proven to be a long and difficult road to follow.

David
Posted 10/12/2014 1:57 AM (GMT 0)
After my biopsy, my doctor said to set an appointment to come back in about 4 days for the results. The ladies in the office said that was too soon, so they set an appointment for 10 days later.

I met the doctor and he told me those 4 words we didn't want to hear, "you have Prostate Cancer". Then he told me, "From this point forward, my life was going to change". Profound words for sure!

He explained how many core were positive, what the Gleason score was and a brief overview of what treatment options. He wanted me to see him back in his office in 2 weeks to discuss a treatment plan and invited me to bring my wife. He,of course, discussed surgery as a good option for my age but recommended I see a RO and gave me that doctor's card. I asked for and received a copy of the biopsy at that time.

Overall, I really liked the way it was handled and recommend it to anyone. I liked to be told one on one, be able to ask questions and find out what to expect in the coming months and years. I had far less anxiety knowing I wasn't going to get a call sometime the following week. Every time the phone rang, I would be anxious thinking it was the doctor calling with bad news. Would I be at work, in the car, at a restaurant when I got the news?

Bill from Florida cool
Posted 10/12/2014 2:02 AM (GMT 0)
I came back for followup 13 days after biopsy. The urologist walked in and asked me why I was there. I told him 'for biopsy result'.
He looked in chart for a minute and then said real loud "My friend you have prostate cancer." Then he recommended DaVinci or radiation.
Posted 10/12/2014 2:37 AM (GMT 0)
Three days after the biopsy I received an email saying that something had been posted to the electronic portal where the hospital communicates records and messages. I logged in immediately and found the results there. I called the office and the doctor had left for the holiday weekend before the report had been issued.

That evening I got an email from the urologist ordering the staff to get with me to schedule surgery. We did speak later that weekend and he made himself available for questions afterwards.

Thankfully I found this forum 3 days later.
Posted 10/12/2014 2:42 AM (GMT 0)
My husband was given the news over the phone by his doctor - told how many cores were positive for cancer, what the percentage of cancer in each core was, and what his gleason score was. The doctor then made an appointment for my husband and I to come in and meet with him to discuss the results. My husband had been hoping to do AS if he had cancer but after getting his biopsy results knew that he would need treatment.

When we met with the urologist he told my husband "This is not a happy biopsy report". I guess he was right because my husband was found to have EPE. He told my husband to get treated quickly (was the right advice) and tried to sell us on his partner as a surgeon. He did give us a hard sell on using the team of him and his partner, but he was in the suburbs of NYC and I wanted my husband to use a high-volume surgeon in Manhattan. By the time we met with the urologist who diagnosed my husband we knew the names of the top NYC surgeons. He was nice enough to give us feedback on those surgeons. He recommended that we speak to a radiation oncologist (one that was part of his network).

I was pleased with the way my husband's urologist handled the cancer news. It is terrible news to be told, so there is no great way to get it.
Posted 10/12/2014 3:37 AM (GMT 0)
I had a follow-up appt one week after my biopsy. I was 90% sure it was going to be positive based on my PSA and the fact that my older brother had been diagnosed a year or two before.

What I was surprised by was the fact that I was high risk: a Gleason 8 (which was subsequently upgraded to Gleason 9). While I was trying to absorb this, my uro told me he recommended surgery since I was "high risk." I asked him what he would recommend if I were a Gleason 6 or 7. He said "surgery" and that was what he always recommended, unless there were proven bone mets.

It was only (much) later when I realized that was what he did: he was a surgeon, specializing in RALP. (And he seems to be quite good, for the record.)

As to the original question, I'm glad I heard the news in person and I can't imagine hearing it any other way, although it's clear that's common...
Posted 10/12/2014 4:01 AM (GMT 0)
My wife and I went to the follow up appt. a week after the 12 core biopsy. We met with an MO who quite straightforwardly told me that I had cancer, that it seemed to be aggressive and was a Gleason 9. At least he put it in words I could understand. He also told n
Me that I had bony mets in my ribs and that surgery was not an option. I realized that as an MO that would be his likely choice but a phone call to the Uro let me know that indeed it would have to be treated with a chemical/medical castration . . . Q
Posted 10/12/2014 9:32 AM (GMT 0)
I was at work.  My wife called wanting to know what the doctor said.  I told her I had not talked to him and she informed me he had just called my house and she gave him my cell phone number.  So I got off the phone and waited for the call that never came.  about ten minutes later my wife called back and wanted to know the news.  Again I told her the doctor had not called but that I had called the doctor's office and had to leave a message.  about ten minutes later she called yet again and it was the same story.  I finally said to her, you know something so tell me what you know.  It was then she delivered those three words, "You have cancer".  I was not prepared for the news as I was convinced I had some type of infection or enlarged prostate.  I immediately left work for the 60 minute drive home and the Uro called along the way.  He was very reassuring and tried to turn the bad news into a positive as best he could saying even though I had cancer the numbers were favorable for a good outcome.  Never did breakdown and cry, like I thought I might.  Guess I was in too much a state of shock.  My wife and I met with the doctor a few days later where he patiently reviewed all the numbers and what they meant along with my treatment options. 
Posted 10/12/2014 11:44 AM (GMT 0)
My first news was from my PCP 24 hours after a PSA blood draw. This was an early Friday morning and I was on the way to work. He said "don't freak out, but your PSA is 59 and you have cancer. I have made an appointment for you on Monday to see an excellent urologist. Do some research over the weekend and call me for any reason".

So Monday I meet he uro and we have immediate rapport. He has read my file and asks personal questions about family and work to break the ice before he examines me. He then asks how I prefer communications. I let him know I want the facts, details, no candy coating, and that I will research everything before accepting anything. He says we need a biopsy and schedules it for Thursday. That goes fine.

The next Tuesday while I am driving to work my uro calls. He says "just as we expected the biopsy was positive. Please be in my office Thursday at five pm. I will have some dinner for us and we will spend a couple of hours going over the results". At that meeting he goes over the biopsy in great detail, uses charts and drawings and conveys the situation effectively. He then spends over an hour going through every treatment option imaginable including cryo, HIFU, AS, surgery, radiation, etc. He takes me through the nomograms and an equation estimating the probability of capsular escape. He then tells me what he wants me to do by first saying that he won't operate as I am too high risk.

He then prescribes his treatment plan starting with HT then using HDR Brachytherapy and IMRT radiation. But, before he will take my case he requires another opinion by an urologist, opinions by at least two rad oncs (one HDR and one seeds) and a med onc. He also required a colonoscopy. I did all that, chose him as my primary doctor and got down to treatment. All this took about five weeks from my first uro meeting to the start of treatment.
Posted 10/12/2014 11:47 AM (GMT 0)
I had my original biopsy shortly before I left for an out-of-state visit with my girlfriend's family. Upon leaving, I was very clear with both the doctor and his staff that I did NOT want the results until I returned home. I could see no reason that the week's delay would make any difference whatsoever.
We were in Atlanta, and I was a passenger with my girlfriend, her brother, and her mother when, against my instructions, the doctor called an told me that I had pc. It was a difficult conversation to say the least, and it really pissed me off.
This is the same doctor who later tried to railroad me into surgery. When I told him that I was considering a mapping biopsy and a brachy consult, he informed me that if I did, I would no longer be a patient of his. Good riddance!
Posted 10/12/2014 1:38 PM (GMT 0)
Just after the biopsy was done the receptionist made an appointment for me to go back one week later to get the results.
When I saw the uro, the conversation started immediately with something along the Lines of: “I’m afraid I have to tell you that you’ve got prostate cancer” (but bear in mind I live in the Netherlands so this conversation actually took place in Dutch)
The appointment was due to last 15minutes and we talked for the full 15 minutes, if not longer, about the options: AS, open or robot Surgery, and internal or external RT. He said that he thought surgery would be the best option, but that there was no need to rush into making any decision about what to do and made another appointment for me to go back in two weeks to discuss this some more. He said he would send my GP the biopsy results and also gave me a copy.
It was definitely not an appointment after which I would have wanted to drive, but the hospital was really close to where I was living at the time so I had gone on my bicycle and afterwards walked home slowly.
There was thus a two week’s pause, and during this time I looked stuff up on the internet and in books etc, and also went to see our GP to ask how things would proceed in terms of who would be responsible for what etc. (And of course also spent a lot of those two weeks telling family and friends this bad news.)
I then went back to the uro with my wife and he went through the options all over again and I said that I had basically decided surgery would be best, but wanted robot surgery rather than open. He said that this meant he would have to pass me on to a different uro and a different hospital as he only did open, but that there was no need to do anything in a hurry and that it would be no problem if I wanted to change my mind or come back and see him again to ask questions. He also said that it would be a very good idea for us to go away as planned, as we had a holiday booked (for our 25th wedding anniversary)
So we went away to France and did our best to think about other things, (and before we left I made sure we had made appointments with a uro at a different holiday where they had a da vinci machine)

The rest is history
Alf
Posted 10/12/2014 3:06 PM (GMT 0)
I appreciate all who've shared their story on how they received the news. It's certainly a day that's burned into all our memories. I wonder if anyone was told about getting outside support from others further along in the journey via face to face groups and/or on-line in places like this forum or did you find support on your own?
Posted 10/12/2014 3:08 PM (GMT 0)
JNF: I'm very impressed by how your URO handled things for you.
Posted 10/12/2014 3:34 PM (GMT 0)
Yes JNF, if my MO would have had dinner for me it would have been cold fish soup . . . Q
Posted 10/12/2014 3:53 PM (GMT 0)
Rick in response to your question about getting support. My Uro did not make any such recommendations. My biggest support actually has come from this forum. While my wife and daughter have been great support, this forum allowed me to discuss things that I had rather not discuss with them. I needed to be brave for them where as I could be more honest in my feelings and really opened up due to a combination of anonymity and shared experience. To some degree friends and neighbors gradually found out about my PC and it was then I realized some of them had been keeping their own PC a secret and they were a source for support to a degree.
Posted 10/12/2014 4:08 PM (GMT 0)
This is a little off the subject but I think is an interesting addition to this conversation.

In November of last year I did a survey here on the forum asking people to tell us their "Worst pain (physical or mental) during your PCa journey so far."

"Shock of diagnosis" was the leading answer (44 % of respondents). ("Mental anguish," BTW, with 31 % of respondents, was second; everything else, such as side effects, etc., was close to single digits). But that survey did find that close to half of us have considered the shock of being told that we have PCa to be the worst pain of it all so far.

Interesting.

Here is that survey, if anyone wishes to read it in more detail:

www.healingwell.com/community/default.aspx?f=35&m=2905799
Posted 10/12/2014 4:18 PM (GMT 0)
My urologist told me post-biopsy. Was a shocker, kind of surreal - still is.
Posted 10/12/2014 8:52 PM (GMT 0)
Here in the UK many people think that the medical care provided in USA is superior because its "private" but most replies here suggest its not a lot better than the UK and NHS!
I had an apt set up 2 weeks after biopsy at the hospital 30 miles away. I expected to see a doctor but my wife and I were actually met by a nurse who started by asking us what exactly we were there for (in a rather artificial best counsellor sort of voice). I said to get the results of my prostate biopsy (my wife was busy bridling and choking back a more spiky sort of answer).
The nurse then proceeded to rattle of numbers at us pausing to ask if I knew what a Gleason score was (yes) that contained the number of cores positive, percentages in each core the Gleason numbers. My mind was spinning at the Gleason 4+3 numbers, she agreed that was not as good as 3+4.
I asked if I could have a copy of the biopsy report she said sadly not as the nearest photocopier was on the 6th floor.
I don't think the word cancer was uttered at all. She did make another apt for me to see the surgeon I thought I was going to be meeting with on that day.

She gave us a number of booklets about prostate cancer and treatments and a card with her name on telling me she would be my named nurse, my contact point for the coming future. I was never ever able to make contact with her again through
out the period of my involvement with the hospital but spoke to a different nurse every time I rang with a question!

We left the hospital feeling shocked and suddenly very lonely indeed.No-one throughout my treatment has ever mentioned anything about any forms of support that might be available to either of us, my prostate has been the centre of attention and once it was gone the job was done as far as my medical team was concerned - job done, move on.
Posted 10/12/2014 9:55 PM (GMT 0)
Prevail,
What sort of follow up therapy are you on? Also, not to be chauvinistic but as cold as my MO was, he continued to be my point man for four years, overseeing my ADT therapy. He even saw me for free for a year while my Medicare was straightened out. That sounds a bit better than the NHS . . . Q
Posted 10/13/2014 1:27 AM (GMT 0)
Here's how I got the news....
I returned to the Uro for the results of the biopsy. He was very frank and told me that he had some bad news for me - that I had Prostate Cancer. He explained the biopsy results in-detail, and explained Gleason scoring. He also told me how shocked he was at the result, because in his 20+ years as a Urologist, I was only the 2nd guy he'd seen with PCa in their early 40s.

He told me that the cancer moves slowly so I didn't have to rush into treatment, but should get started immediately on considering surgery vs. brachy with the goal of beginning treatment within around 2 months.

He told me that he was available to be my adviser and advocate while I explore treatment choices - and that he could be an unbiased guide since he doesn't perform any PCa treatment and has nothing to gain based on whatever path I chose.

Then, he sat at his computer and sent a personal message to two of the top LARP (Dr. Ash Tewari) and brachy (Dr. D. Nori) docs in NYC - telling them to expect to be seeing me in their office very soon. Then he took me to his secretary, and instructed her to do whatever it takes to get me appointments with those docs as soon as possible.

Then I came home and made my first post on HW. You can read it by clicking the the "about me: Intro" link below.

-Gedman
Posted 10/13/2014 12:18 PM (GMT 0)
After my biopsy I had an appointment with the urologist. At 44 I didn't really know what a urologist was.. He hands me my pathology report and had me read it...with my wife. I was confused with all the terms, but I told myself I had cancer.

I fired him a week later.
Posted 10/14/2014 12:28 AM (GMT 0)
I received an I inverting email to check my online medical records two weeks before I was to meet my URO...I was getting ready to travel out of state for business, woke up Sunday morning before my trip the next day and had this email signed in and sure as heck there was my results positive... Had to stew on that before I meet with them...they weren't suppose to send the Doc was pretty mad when he found out I already knew and had for two weeks, it was the start of a down hill process that's almost a year later is still pretty bad, leaking, ED and start SRT this week!
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