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Met with Dad's Radiation Oncologist again today after his Bone and CT scans. Mind you, he is meeting with us with less than a 1% chance he will be able to utilize his specialty. He's just that good of an oncologist that feels a duty to help Dad transition to the appropriate doctor to continue to follow his care. Knowing we were in a bit of a vacuum, he stepped in to guide us from point A to point B as he was part of his prior team 7 years ago when dad decided radiation was the most appropriate option to fight his Prostate Cancer.
While there is a small chance for salvage radiation/seeds/ or other options, he immediately said he does not recommend it as the side effects do not justify the quality of life issues you might risk. So immediately, anything he could offer was off the table.
CT Scan: Did not show any involvement of the lymph nodes and the prostate bed/gland remaining was uniform in size and did not indicate any growth. Potentially still contained within the prostate bed.
Bone Scan: Completely normal EXCEPT for a "hot spot" in the right sinus area underneath the eye socket. It did not have hard borders like the bladder area, but it did light up with softening at the edges.
They said it could be from recent trauma/fall (no), sinus infection with bone involvement (?)... Dad has upper dentures and has for a while - dr said that shouldn't matter?. Oncologist sent him for a facial series of Xrays and did not think it was related to prostate cancer possible recurrence, but wanted to be thorough.
At this point, we are going to wait for 2 months and redo the PSA level to see how fast it is rising (hoping for a fluke test), but know that in the next months he's probably looking at hormone treatment, but making sure he/we are fully informed and facing it head on. Again, don't want the memory loss to get worse. It's not forgetting to take meds or take care of himself or directions or words (like you might expect from Alzheimer), but more like going over the same thing over and over again like an ability to comprehend new situations.
Also, curious what the Bone Scan lighting up in the right sinus area might mean... hope there is an easy explanation, but not completely ruling out if that could be related to the memory issues or not.
Thank you again to EVERYONE who has posted/commented/pointed us in the right direction here... we take every comment here to heart and read it and use it to understand his situation better. Thank you!
Medical Oncologist not necessarily = or Greater than Radiation Onocologist
Well, that was an interesting appointment with the Medical Oncologist.
After taking some history and questions about current symptoms, the Med Ono started discussing treatment options. He never reviewed the CT scan or Bone scan with us. He started with you've had EBRT/IMRT several years ago and declined to do brachyotherapy(sp?) as recommended. Uhm, while it was discussed as an option and dad was a good candidate for it, it was never presented as a much superior treatment option for dad. After thorough consideration of the pros and cons of all treatment modules (including proton therapy), Dad settled on EBRT/IMRT and everyone of his team and family fully backed his choice.
He went on to say I don't see you wanting to try that now. So your other options are to treat not cure the cancer. One way to do that is with medical castration and went into about a 5 minute detailed discussion of the specific of what they do during that (ok, I know it's an option, but I could feel dad squirming - heck I handle medical stuff well and I was squirming).
He then said the other way we can achieve the same goal is hormonally with shots. He went on to discuss Hot Flashes, muscle weakness, and fatigue as the main side effects. Dad said sign me up! (yeah, after just hearing exactly how they could medically castrate you I'm thinking a shot once every 3 months sounded good).
I asked about mental confusion and depression, and he said those could be side effects but normally are not that bad. I asked about intermediate therapy and he does not recommend that as he says there are studies to show it can cause the cancer to become resistant faster by allowing the none testosterone thriving cells to grow faster. He went on to discuss a few additional things we could try should it become hormone resistant (mentioned a prostate cancer vaccine - wrote the name down, but it's in Dad's medical folder) as well as a few other drugs. Oh and he also suggested Dad have the MedRX genetic test for the BRAC3 gene since he has 2 family members with prostate cancer (Brother who died from it in his late 60s after aggressive therapy and Father who died at 88 with prostate cancer but not directly from it). Dad did do the test more for me and my brother and my son/ his grandson.
He asked dad when he wanted to start shots and he said next Thursday.
That night Dad was calling me asking if I thought he should wait a couple of months before starting the shots (which the Rad Ono was on board with to kind of see how he's trending). Since that time I've done nothing but pour over the site, survivor stories, research, Dr. Barken's lecture on Proscar and Casodex, Dr. Meyers patient protocol, dad's history and how slow it has been to reoccur, nutritional supplements, dietary changes, ...
I called the next day and asked his nurse if there were any other treatment options since we aren't sure if the doctor didn't get there after dad said sign me up for shots after the castration lecture. Also, asked if he should wait until he actually had a PSA doubling time of 12 months (his PSA test on 5/28/15 was 4.93 (after 2 DREs in the last 2 weeks - but up .5 in 1 month). She called back that afternoon and said the doctor still recommends the 3 month Luperon shots, but he is okay if Dad would like to wait before starting. We canceled the shots for next week and will keep his appointment in 3 months to further discuss options.
So, I have 3 months to research and do any dietary changes/supplements with dad. I'll post something in the next day or two with my thoughts on what we can do over the next couple of months.
Doubtful dad would travel to Virginia to see Dr. Meyers, but will look into if Dr. Barken is still doing phone "coaching". Eventually, I'll create a survivors page for dad with all this info. So thankful to have those to look over right now.
Re: Medical Oncologist not necessarily = or Greater than Radiation Onocologist
Still plan out putting out all the clinical data I have at some point and my thoughts, but just spoke with a relative who's husband has significant BPH and she recommended their Urologist who I've often felt had similar "whole body/person treatment goals" that I'm looking for with dad. Turns our he's written a book "The Decision" and Terry linked his worksheet for treatment decisions...
I'll be calling on Monday to schedule an appointment as over the next several years, I'm sure dad will need a urologist of some type since his original one retired. Can't tell you how excited I am to find this resource locally without having to travel to Atlanta over an hour away.
