Suggested treatment "locations" for advanced prostate cancer

I'm in need of some quick advice regarding potential treatment locations for my father's situation.

The details: (apologies for some of the fuzziness of the details, l live across the country and get all the info in small pieces)

Age: 60, lives in southwest ohio
Initially detected with a PSA test - 4.6 (rose from 4.1 over a very short period - maybe a month or two)
Biopsy: 4 of 8 cores positive - one 6, two 7s (3+4), one of the 7's was 50%, and one 8 (15%)
CT / Bone Scan - everything looked good except for some spots in his arm/shoulder area
X-Ray - confirmed that something was indeed there,
MRI - confirmed bone cancer in his arm/shoulder area
We have yet to catch a break with this

He just got the MRI results this morning. The urologist that my father has been working with (since the biopsy phase), told him that he was going to call Ohio State (The James) today and speak with (I'm guessing) a medical oncologist, to get a better sense of the options, as well as probably hand over my dad's case to him.

We want to consider the best treatment options available - so I'm wondering if those in the forum can provide where they think we should consider . . . we will be doing our own research of course, but this advice could save us some time and point us in the right direction.

If you can provide any guidance with regards to how to best get in touch with any of the places you recommend, that would be even more helpful.

Thank you in advance (and I apologize if there is another link that has discussed a similar topic, feel free to point me there if need be!)

So sorry about your pop.

I always suggest that a person be evaluated at a National Cancer Institute

Ohio State (James Cancer Center/Hospital) is. Michael A. Caligiuri, M.D. was listed as the Director.

Best of Luck

Hero

 

thanks for such quick replies. I agree that this set of facts seems rather unusual. At first, the Dr. was thinking that the CT/bone scan results were just some sort of fluke, he asked my dad if he had ever broken his arm in that area, etc. the X-ray was done just to "rule out anything." I have every reason to hope that once a medical oncologist is brought onto his case, he will review my dad's entire record and make a similar determination as you. I would guess that this means doing a bone biopsy before additional treatment is considered?

Also, I should specify that the PSA tests were done in early/mid november so they may be somewhat out of date with the rest of his test results.

I will look into what dr they get referred to at Ohio State.

Thanks so much for all the recommendations so far!

Thanks again for all the responses. ChrisR, can you provide more details regarding your comment? What made your friends/family/acquaintances/other forum members that you've read comments from have bad experiences at Ohio State? I know that everyone is trying to provide helpful guidance and insight, but vague comments like these are really of little value. Were certain doctors unhelpful/inattentive? Are you speaking specifically about OSU's ability to care for prostate cancer, or are you speaking more generally? The more details you can provide the better.

I will definitely research both the Cleveland clinic and the WV doctor more explicitly based on your recommendations.

Thanks!

Thanks for the suggestion Nellie. I will definitely research it more and put it on the list of questions my parents should ask at their next meeting with the dr!

I would certainly recommend Cleveland Clinic. As was mentioned, they are one of the highest rated in the country.

Ohio State is also a fine hospital, and they do some good work. Based on your initial findings, I would recommend second and third opinions for your dad.

I will be surprised if his spots are cancer.

Good luck and certainly stay with us here. We will help mall we can..

HotPink
Your Dad definitely needs to move his care to a medical oncologist who specializes in treating prostate cancer. Ohio State does excellent work and great research if that is convenient.

There are a couple of internet resources you should look at. First join the Malecare on-line support group that specifically deals with advanced prostate cancer. It is a Yahoo group, so go to groups.yahoo.com and search for the advanced prostate cancer group. This on-line group has over 700 men with advanced disease, as well as their significant others, including many daughters. They will share their experiences and provide guidance.

Also go to the Malecare web page (malecare.org) and click on the purple square marked advanced disease. You can then download (no charge) the comprehensive "Gide to Advanced Prostate Cancer " as well as listen to the pod casts.

Joel

Try Derek Raghavan at Taussig Cancer Center, Cleveland Clinic, 216 445 6888

Hotpink,

As you saw from my previous post, I am a Cleveland Clinic alum, and if you want specific doctor recommendations, my e-mail is active in my profile.

Goodlife

Sorry that you have had to join such a group.  My dad 65 y.o. was diagnosed with Prostate Cancer in April of this year. 10 of 12 cores positive. Gleason 9 very agressive type with exstensive mets to the bones.  His PSA was only 8.45 at the time of diagnosis. His PSA six months prior to diagnosis was 1.43.  He has the type of cancer that doesn't express much PSA.  He received his first shot of Trelstar in April ( he did not receive Casodex prior to starting the Trelstar).  In July his PSA was down to 1.08 and he was then started on Casodex.  Unfortunatly his PSA has been on the rise and he is about to start chemo.  But my point here is I guess is that all Prostate Cancer is different and while it is unusual to find bone mets with a low PSA the fact is that it is not unheard of as is the case for my dad and also yours. I wish you and your father lots of luck and good health in your journey. I've done a lot of reading since his diagnosis and do a lot of lurking on this forum and also on the yahoo forum.  The best advice I can give you is to try and keep informed and read up on the current treatments for prostate cancer.

       Harriett

So sorry to hear about your Dad. You will receive good lay advice here on this site.

I just wish to add that I was diagnosed in May with a Gleason 9 and two bone mets. My PSA the year before was 5.8 and considered 'normal' for my age of 72 (even though it had increased from 4.8 six months earlier). In 8 months the PSA exploded to 27.

Now, I either have a very aggressive cancer that spread directly and quickly to the bone (left illium and right femur), or I have had these bone mets for some time with no further spread, or perhaps they are not really bone mets at all despite the CT and MRI Scans.

In any event, I am part of a study being treated for oligometastases, where my two bone mets and prostate received radiation at curative doses (SBRT). That was preceded by Triple Blockade Hormone Therapy that will continue for 2 years.

So far so good. I remain symptom free with a descending PSA at 0.14. My follow up scans every three months after the radiation will perhaps tell the tale.

Good Luck to your Dad. Keep positive!

Thanks for all the great input / advice / optimism & hope everyone!

We have made some progress since my post earlier this week.

Monday night my dad started taking bicalutamide, with the intention of getting his first HT injection today (which didn't end up happening, see below).

Yesterday, my mom has made appointments for the first week of January at both ohio state and cleveland clinic - though neither appointment are with our "first choices" in terms of medical oncologists. They had very long waiting periods (2.5 months at OSU!!) so she took whomever was suggested by the person on the other end of the phone in order to get in more quickly. I am hopefully that just getting the foot in the door will help, and if we need to move around within the departments, maybe it will be a little easier?

My parents went in today for their appointment for the first HT injection, the dr had decided that he now recommends a bone biopsy to make sure the hot spots are prostate metastases. I'm not sure why that took him 4 days to decide - from monday when he called my parents and told them it WAS mets, and suggested starting HT immediately, to today. I'm guessing it has something to do with the scheduled 2nd (and 3rd) opinions, as well as my mom point blank asking him on the phone yesterday why we wouldn't do a bone biopsy just to make sure.

We now have to wait til next friday for my dad to get bone biopsy, which in turn delays the first HT injection til after the biopsy. This is fine by me because I was wondering why my dad would be getting the first injection prior to having taken bicalutamide for the 7 (or 10) days it seems most drs suggest to prevent the risk of PSA flare. I dont think the question was asked given his change in recommended next steps.

I'm still considering pushing my parents to get another opinion from one of the "big guns" (e.g Myers, Scholz/Lam, Strum), but I need to play that by ear at the moment. They are beyond overwhelmed and asking them to leave the state for opinions may be more than they can handle right now, even with all the potential upsides. I think I will see how the two appointments go (Jan4/Jan5), and then decide.

So we are in another holding pattern (its been a recurring theme for the past month). I get to see my parents tomorrow for the xmas holiday so it will be nice to finally have conversations face to face rather than over the phone, email, and video chatting :) . I hope everyone has a fantastic holiday break!