Hi all, a while since I have posted....but might have an issue of potential interest to others.
Diagnosed July '08 with Prostate Cancer Gleason 6, and last PSA was 12.5 - after a bit of a roller-coaster set of readings. Bladder wrecked after massive acute retention, so permanently catheterised. Prostate pretty big at 60cc, but all conventional treatments guaranteed to make things worse...so have been on unofficial Active Surveillance/ Watchful waiting - against original advice from Urologists and Oncologists, but they seemed to become more relaxed about it.
Have a range of other health issues, including a longstanding numb thigh. Had lots of X-rays and electric shock stuff - and another Bone Scan a few weeks back. Saw the Orthopaedic Consultant today, and he commented on 'Increased Uptake' on the Bone Scan which - he said - might be consistent with developing Rheumatoid Arthritis. We didn't discuss the cancer stuff at all, because his speciality was the legs and back problems I've been having.
Wasn't until I got home and started Googling about 'Uptake', that I realised he was talking about 'Hot-Spots' on the Bone Scan ! Should I be worried ? Have another PSA test next week, and scheduled to see the Oncologist again on October 5th.
All advice most welcome....
Sorry to hear about the scope of your medical problems. I'd like to share with you an idea that I picked-up very early in my journey.
I formerly worked for a large global Fortune-100 company, and started my career in another state but moved to Chicago-area 17 years ago. One of my boss's boss's boss ("Harry") from out-of-state (from early in my career) heard I was diagnosed with PC, and forwarded his home phone number to me through a common connection. It had been at least a decade since I had seen or talked to "Harry" (now retired, and a PC survivor for several years), but I spent an hour with him one on the phone one evening just several weeks after being diagnosed. I was very early in my learning curve of PC, but I learned a tremendous amount from his experienced layman's perspective that night which helped me in my upcoming weeks.
"Harry" told me about his experiences flying around the country in the corporate jet to visit the very top PC experts after his initial diagnosis. He told me that the doctors are very busy, and so what he had done to maximize his time with them was create an "Executive Summary" of his medical history, with key tests and test results. The "Exec Summary" was less than one page, easy to read, but had the test reports also available as "back-up" material. (The "Exec Summary", complete with "back-up" material all sounds so corporate, doesn't it?)
Anyhow, I created my own "Exec Summary" right away before my next doctor visit which was to a new, 2nd opinion doctor, and it seemed useful to hand it to him as he walked in the room, allowing him to quickly read/scan the page. I have since then learned that PC expert Dr. Stephen Strum created a similar concept called the PCD, or Prostate Cancer Digest for patients to organize their PC medical history in a way that is easily understood by physicians offering to help. Obviously, someone undergoing ongoing care would continue to make updates to the PCD, or "Exec Summary" as new events unfold.
So, perhaps obviously now, the idea I wanted to share is for you to create your own medical history "Exec Summary" to give to any doctor you visit in the future, especially if it is a new doctor. I made my original "Exec Summary" without any guidance besides Harry's description, but if you did a Google search for the words "Prostate Cancer Digest" and "Strum", then you could find links which would help guide you in Dr Strum's recommended format.
I realized later that I didn't really address your question, so I'm back...but please do read the earlier note from me, below.
I think that the answer to your question "should I be worried" is best answered in two parts.
Firstly, know that it is usually advanced cases of PC that start showing up in bone scans. Gleason 6 doesn't correlate closely with advanced PC. Unlikely that you have an advanced case.
Second, do you have arthritis? If so, the "uptake" should be no surprise. My knees lit up brightly on my bone scan. Not an area of concern.
Perhaps interestingly, I had been so stressed out about my recent diagnosis that I was grinding my teeth and ended up needing an "emergency" root canal just about a week before my scans. The first thing the doctor said a week later in his office examining room when he walked in holding the scans was "Who hit you in the jaw?" It was lit up brightly, too.
Linking my message below to this one, maybe you want to get the bone scan report and make it a part of your PC Digest. I was also able to get a CD of the scan itself for my records simply by requesting it from the hospital where the scan was performed.
Once again, however, PC in bones is an advanced case...unlikely that you have this situation.
Many thanks for taking the trouble over those very comprehensive replies.
Your suggestion re. the 'Exec Summary' sounds extremely valuable, and I will most definitely take it up. Having now been seen by so many different doctors and specialities - and having very frequently to give them my own somewhat garbled summary of my assorted ailments and procedures - maintaining a continuously updated piece of paper outlining 'key facts' would be much better. The consultant I saw last week hadn't been aware of the EEG procedure I'd had only the week before, and very obviously hadn't been able to look back very far in my now-voluminous notes (The mainly paper files held within our National Health Service, which are constantly transported around at great risk).
I'm now also reasonably relaxed about the bone scan issues - I think. However, just this morning got a call out of the blue for what seems like a hurriedly arranged appointment with my general health consultant. He is probably going to tell me officially that I am becoming arthritic in my 'old age' (nearly 59) , but it apparently runs in the family. The actual PCa is more of a background issue for me right now, everyday life being much more dominated by the ongoing bladder/catheterisation issues. By contrast, a little arthritis isn't going to worry me too much....
