First steps after diagnosis?

Hello! I am looking for help with planning for the "first steps after diagnosis." My husband had a PSA of 8.4 on routine lab work. We were referred to a urologist, who sent us for a multiplanar MRI. That indicated a small area of concern. So we did a targeted biopsy. And now we are waiting (and waiting) for the pathology report.

I've been reading the boards, and want to be prepared with all of the right questions if we get a positive for cancer.

The first thing we'd like to do is get a second option on the path. How do we go about sending to Bostwick or John Hopkins for a second opinion? i see this mentioned on the board. Does my urologist send the actual tissue, or is it just a second take on reading the data? Is getting a second opinion on the pathology something that my insurance should cover, if not, does anyone know an approximate charge for this?

We are located in Austin, TX. I would assume that my next steps post diagnosis would be to: talk to a good local surgeon, talk to a local radiation oncologist about standard forms of radiation, get the spiel from the local CyberKnife center, and then perhaps get in the car and go to MD Anderson in Houston and see about their Proton therapy. If the cancer comes back low volume and low rating, perhaps we could do Active Surveillance locally, or go to MD Anderson for their Active Surveillance program.

Are we on the right track? Just trying to manage expectations ahead of our appointment on Monday.

Thanks!

hello and sorry you are burdened with this concern.

Getting a second opinion on slides and talking to various experts who cover different areas is the way to go unless you know what you want.

But I think you're getting ahead of yourself and should wait for the call. I know it's not easy, but worrying is also unhealthy and you'll have plenty of time to form a plan if needed when you find out.

Best of luck.

First steps after diagnosis? Or steps to take prior to diagnosis? Read the thread titled "Newly diagnosed with PC...read this thread first." This is a 'sticky' thread located at the very top of the page of all prostate cancer posts. Good place to start.

Bostwick for 2nd opinions
https://www.bostwicklaboratories.com/services/laboratory-services/second-opinions.aspx
I think I emailed them the forms, they did the rest.

The next step, would be to wait for the results. The actual lab results can help you decide what the best treatment option would be. Typical PC is progresses slowly so you will have time to make those decisions. Do not rush into any one treatment, once you do you can't reverse it

Educating yourself the best you can do now. The URO providing the results is a surgeon, expect them to recommend surgery
http://www.yananow.org/Links.shtml

SSATX-

Are you on the right track? You could be the poster child for the ideal patient advocate! I'm impressed.

Below are the links for Bostwick and Epstein. You can call to get current prices.

/www.bostwicklaboratories.com/services/laboratory-services/second-opinions.aspx

pathology.jhu.edu/department/services/secondopinion.cfm

I just had to call my urologist's office to have them forward the slides. It's a pretty standard thing to do. Some insurance will pay, some won't. You can ask for pre-approval from them.

- Allen

In case you cannot relate to Tudpock18's "sticky thread" advice, here's the link to the thread he was referring to

www.healingwell.com/community/default.aspx?f=35&m=2652250

LupronJim

Thank you, yes. We are working our way through the "sticky thread" information and links.

Thank you all for your replies! We actually got good news on Monday, as no cancer was found in the 18 biopsy samples. We were preparing ourselves for the worst, as the urologist certainly indicated that it was probably cancer. Still in a bit of a daze. Since we had an mpMRI first, the urologist knew which area held a little area of concern. So I guess it was a little benign lesion or scar tissue from prostatitis? Wish we knew for sure.

Lefty, can I ask who your Austin urologist is that diagnosed you?

For what it is worth your Uro will most likely want to monitor PSA every 6 mos maybe 12 and if it goes up then do another biopsy. Unfortunately repeat biopsies are the standard of care (I had 2 neg, a rising PSA and then pos on #3). Who knows if there was cancer in the first 2 the term is systematic random biopsy so it can be missed. I hope for you and your husband's sake it continues to be neg a rising PSA with neg biopsy does occur. I am planning on having Cyberknife treatment within the next month or so here in Houston. I met with Dr Tom Pugh at MD Anderson and he is a very nice smart guy. For whatever reason MDA doesnt have CK but does have Proton. The other curative option is surgery and possibly your husband is a good candidate for the robotic approach. If you all do come to Houston let me know and if I can be of any help in navigating the area I will certainly do so.

Ms. SSTX, those are good questions that I did not happen to ask of Dr. Ghafoori. If I recall correctly, I think Seton/Brackenridge acquired their Cyberknife in approximately 2006. From what I could find on the interwebs, the Cyberknife system had been approved by the FDA for use on prostate cancer in 2002.

While it was convenient to be able to see multiple doctors at MD Anderson in one day, the downside was that each of them wanted to do their own "examination;" by the end of the day, that box of blue gloves seemed to be running low...

And I am considering joining the Active Surveillance group at MD Anderson, which will entail another biopsy in September.