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To those who are newly diagnosed- PLEASE READ IT VERY IMPORTANT!

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Prostate Cancer
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sammyswife
Regular Member
Joined : Sep 2015
Posts : 30
Posted 6/30/2018 10:35 PM (GMT -8)
I am the wife of a prostate cancer survivor . It's has been a few years since diagnosis -he had a radical prostatectomy and Thank G-d all is well. the reason I am writing to those who are newly diagnosed is that when my husband was first diagnosed it was from a urologist who actually said that the scans that were taken showed his cancer metastasized to the bone and started to give him Lupron shots and a pill - I researched more on these boards and was told to get a second opinion as his PSA was not so high and neither was his Gleason score that would fit a metastatic diagnoses.My hubby went to Sloan kettering,took their scans and tests and got a completely opposite diagnosis of non metastatic prostate cancer! Miracle. He was able to have the radical prostatectomy which the urologist said he couldn't have and when the biopsy came back it said the cancer was all contained and did not spread anywhere else!! PLEASE all of you get a second opinion by Sloan Kettering or another very well renowned facility because it literally can save your life!!!!!!!!
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John_TX
Veteran Member
Joined : Jan 2015
Posts : 1245
Posted 7/1/2018 4:53 AM (GMT -8)
Sounds like that urologist that gave the initial diagnosis should take up a different career.
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Michael_T
Veteran Member
Joined : Sep 2012
Posts : 4041
Posted 7/1/2018 5:56 AM (GMT -8)
Wow, what a story! I do find that sometimes guys with lower risk diagnoses get referred for bone scans by their uros. And the bone scans show the accumulation of every injury we've had over our lifetimes and they all get noted as "suspicious." It can add an additional level of stress at a very stressful time.

So glad you took initiative and got it worked out!
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Fairwind
Veteran Member
Joined : Jul 2010
Posts : 4107
Posted 7/1/2018 7:14 AM (GMT -8)
This sounds more like some sort of mix-up in the original biopsy and scan results...Urologists do not interpret scan results a Radiologist would have done that ..Do you have a copy of his original biopsy report? If so, what was his Gleason score determined to be ? Also, the original scan that was read to determine that his cancer had metastasized, those reports must still exist....Not that it makes any difference now, it's all water under the bridge. But SOMEBODY made a mistake right at the beginning that could have been tragic..That's why most of us get second and third opinions before we undergo major medical treatment or procedures..Glad everything worked out and Hubby is doing well...
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Bohemond
Veteran Member
Joined : Apr 2012
Posts : 1438
Posted 7/1/2018 8:33 AM (GMT -8)
Old breaks and cracks in bones can look suspicious in scans. It's sometimes possible to have minor fractures without knowing it. I slipped on the ice last December and thought I may have cracked but not broken a rib or two. I know the feeling from past experience. I didn't bother to go to ER for x-rays but when I had bone and CT scans in January I alerted the scan team so they wouldn't misinterpret. They confirmed two cracked ribs in addition to two other older healed ribs I'd also told them about. These might otherwise have been interpreted as suspicious.
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Deletedman
Regular Member
Joined : Apr 2016
Posts : 52
Posted 7/1/2018 8:55 AM (GMT -8)
Too many put doctors on a pedestal and thus dont dare to question. I'm glad your husband escaped further injury at the hands of a "professional"
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halbert
Veteran Member
Joined : Dec 2014
Posts : 5818
Posted 7/1/2018 8:59 AM (GMT -8)
I'm also one who had full body bone and CT scans after diagnosis--and my reports stated, more or less, that I had a hiatus hernia and bone deterioration (Pre-arthritis) in both shoulders and left knee. To which I responded with, 'tell me something I didn't know'.

This example above is one reason we encourage the newly diagnosed to always seek a consultation with the real experts. As has been pointed out in here before, many men spend more time and effort researching their next vacation than they do researching their medical treatment options.
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sammyswife
Regular Member
Joined : Sep 2015
Posts : 30
Posted 7/1/2018 12:05 PM (GMT -8)
That's why I posted this thread- to alert EVERYONE to get a second opinion- this urologist thought he knew it all When I told him I was going for a second opinion he said " I bet it was meta static" well Thank G-d " M r know it all " doesn't know it all! i feel bad for the others who have had their radiology reports read wrong! My husband was given Lupron along with casodex for being misdiagnosed as having meta static cancer when in fact it wasn't and was probably an old injury from him being a paratrooper in the Israeli army! And the radiologist who read this was from "supposedly" a reputable hospital that's why I urge everyone to seek out the doctors and centers that REALLY have expertise in this in my husband's case it was Sloan Kettering cancer center in New York, Dr Michael Morris prostate oncological expert, Dr Vincent laudone surgeon - I'm glad I did my homework to help my hubby! And with wonderful people helping me on this site - and the wife's of caretakers called Ladies only website on the web.
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lifeguyd
Veteran Member
Joined : Jul 2006
Posts : 691
Posted 7/1/2018 10:23 PM (GMT -8)
Good to know.. I remember when my "after biopsy".. radiology reports came back... the radiologists said my spine and hips lighted up like a "broadway musical" (I can't remember the medical terms)". However, I had already given them a heads up of earlier diagnosed need for spine and hip surgery.

I still need that back surgery, but prefer to find solutions for Pca.
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theswan
Veteran Member
Joined : Nov 2005
Posts : 1304
Posted 7/4/2018 9:17 AM (GMT -8)
Thanks very important topic
Monday July 9th I get my second opinion and will most likely stay the course with New York Prespyterian hospital. They are rated 7th in prostate cancer care Sloan is 4th best according to US News & world report.

I am grateful to the people here for the vast amount of information. My urologist was quick to say "surgery" and suggested cryotherapy due to a few factors I have (Afib, blood thinners and sleep apnea)

I may go that way but value the information the doctor at NYP will give me (Dr Decastro)

Glen
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halbert
Veteran Member
Joined : Dec 2014
Posts : 5818
Posted 7/4/2018 10:14 AM (GMT -8)
theswan, I didn't know anyone was doing whole gland cryo anymore. It was the coming thing 25 years ago, and didn't work as advertised and caused more issues that expected. Please make sure to talk to the radiation oncology team.
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theswan
Veteran Member
Joined : Nov 2005
Posts : 1304
Posted 7/4/2018 10:52 AM (GMT -8)
I was offered that by my urologist and he said the equipment was not even delivered yet but should be up and running in August.

From what I read NY Prespyterian is performing cryotherapy with good results but long term effects haave not been noted yet. This leads me to believe it has been renewed as a treatment. They can do a focal ablation which targets the tumor and not the rest of the prostate.
So maybe the "focal" part is new. I'll do some more research..

Glen AKA theswan
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