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How were you given the news you had PC?

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Posted 10/14/2014 1:01 AM (GMT 0)
My Urologist called me at home with the bad news and had me call for an appointment where he summarized the rather gloomy pathology report. I was hoping he would recommend radiation, but he said in no uncertain terms that I needed to have a RP and told me straightout that I would be dead within 10 years if I didn't take decisive action now. Main complaints were having to call surgery scheduling several times to get a date and having to ask for a copy of the path report. I found help interpreting it both here and from other online sources. Has been 3 years since the RP, PSA still undetectable, still pretty much 99% ED, still wearing adult diapers or pee pads. Am living with it just fine, sure beats what could happen if I didn't take immediate action.
Posted 10/14/2014 1:12 AM (GMT 0)
My (then) URO called me around 7pm two days after the biopsy with the news. He said that he had GOOD news and BAD News.

The GOOD news was that I had Cancer, but a small amount in 1 of 16 needles.

The BAD news was that I had one of the most virulent prostate cancers (Gleason 5+4).

He then said to go onto the Internet and read up as much as I could about PCa, Staging etc., and invited my wife and I to come and see him two days later.

And, suddenly the whole universe went quiet and I could hear the rotation of the earth .... it was a strange day!

Last year this time, four weeks after the biopsy I was preparing for surgery.

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Posted 10/14/2014 4:27 AM (GMT 0)
I was laying in the hospital quite sick, getting IV antibiotics for the sepsis I got from the biopsy. My uro had said at the biopsy that he would call with results in a few days when he returned from a brief vacation. I was still feeling poorly from the infection when the on call doctor from my uro's group came by on rounds to check their patients in the hospital. He bluntly stated I had cancer and the office would set an appointment for me to talk with my uro once I was discharged. No details were offered and I was more focused on beating back infection at that moment.

Later I realized this on call doc was probably the same guy in the group who read my slides. In any case I had a few days back home to go online before the consult with my uro. So my first visit with my uro was mostly confirmation of my hurried research based on a vague and impersonal message.

It was a poor start, but once I evaluated choices and picked a surgeon things started turning around. I now have more than 3 years of zeros and essentially full recovery on all fronts.

Explorer
Posted 10/14/2014 6:12 AM (GMT 0)
My uroloigist had only received the first page from the imaging firm, but I had gotten a copy for myself in advance.

So when he hemmed and hawed about what it meant, I blurted are you trying to tell me I ahve stage 4 metastatic cancer and he was a bit relieved and said yes.

My wife Karen as with me and we are both people of faith and took the news calmer than he had expected. That was in Feb 2013.

Much later it turned out depending on who one chooses to believe, either the Lupron since 3-28-13 cured my one mets or I was was misdiagnosed by our rural imaging firm in west central Florida.

I eventually went to a new meidcal oncologist Dr Jeffrey Turner an asociate of Mark Scholz and Richard Lam in Marina del Rey CA at Prostate Oncology Group. Dr Turner sent me to Dr Fabio Almeida in Phoenix who ran the F18 sodium bone scan that ocnfirmed I had no bone mets but was suspicious for Lymph nodes. He then ran a C-11 Acetate trest that confirmed I have 3 micro LN's all contained within the pelvic area.

The latter C-11 is not covered buy insurance, has only a 20 minute half life and normally costs $3,000. Since I was having the F18 sodium test (normally covered by insurance and available in lots of places) the day before my out of pocket was $2,500 package deal.

So thankfully I was downgraded form stage 4 Oligometastatic with bony mets treatable but not curable radiation for palliative reasons only to stage 3 locally advanced Oligo potentially curable with radiation.

On the plus side, before my diagnosis my uroloigist who is of Indian descent spoke very quickly and never stopped til he ran out of breath and then moved on to the next DRE. However at diagnosis and beyond he spends as much time as my spouse Karen and I require.

I guess that's just the way US Health care doctor reimbursements force them to not spend time on the mundaine.

LupronJim
Posted 10/14/2014 11:18 AM (GMT 0)

PSA3DOT7 said...
...
And, suddenly the whole universe went quiet and I could hear the rotation of the earth .... it was a strange day!

Beautifully said. I totally get that, "I could hear the rotation of the earth". Never heard it put that way but it really captures the sensation. Thanks!
Posted 10/15/2014 3:46 PM (GMT 0)
January 3rd 2011. " You know I wouldn't be calling if it was good news. You have prostate cancer with a gleason score of 7. You are also the youngest PC patient I've had in 30 years of practice. Not a happy new year. I made you an appointment for Thursday."
That's verbatim. The worst part though was after surgery, being in the room directly across the hall from where my little sister had died in 2001 of b cell lymphoma at the James Cancer Center. I had spent 2 months there with her. Too many bad memories.
Posted 10/15/2014 3:51 PM (GMT 0)
Officially when my uro informed my wife and I after the biopsy. In reality, w week before when the technician who performed the Bone scan had the screen in a position where I could see it the entire time.
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