Welcome to the club no one wants to be in.
Firstly, read the two G9 threads
www.healingwell.com/community/default.aspx?f=35&m=3182035Inside the thread above is a link to the prior one of G9's that got so long a second thread had to be started, and you can see there that your dad is not alone and also not the worst metrics with so many guys doing so well despite the G9 diagnosis.
As you get familiar with the forum, you will note that there is a lot of advice and support but none is better than my mentor Tall Allen. So pay particular attention to Tall Allen who though he is a layman, has uber extensive knowledge of prostate cancer, and also runs two PCa support groups in LA.
I intend to attend his Support group meeting in LA on OCt 13 while I am in town, also meeting a fellow G9 Hawaii Guy in person on Oct 10. He BTW is doing HDR High dose brachytherapy and may chime in.
Thanks to Tall Allen I am doing a combination of Provenge Immunotherapy and SBRT which is a form of very high dose radiaiton (8 Grays for a toal of only 40 Gy's) accomplished in only 5 sessions called fractions versus a typical prostate cancer radiaiton that runs 5 days a week for 7-9 weeks, where the radiation totals about
79 Gy to 81 Gy.
Typically radiaiton is no do-overs but with SBRT beign only 40 Gy's, if needed Icould potentially do another SBRT to same
location and still be within the 80 Gy limit.
This combination is to leverage the so called abscopal effect that you can Google if it becomes peritnent
Either you or your parents should get physical copies of all doctor visits and tests and get CD's of all scans for your records. It is your right (actually your father's) to have them.
Rather than hand write notes that you later either cannot read or grossly mis-spelled, I recommend the purchase of a USB device that doubles as a recorder. It does not have to be inserted into the USB port to record, just to replay
Here's a link
www2.pulsetv.com/Voice_Audio-USB-Recorder/productinfo/6165/You could also record via I-phone.
My spouse Karen got ours on PulseTV.com but also available on Amazon.
To qualify for Provenge you dad needs 2 PSA increases at least 14 days apart, which he may have already accomplished once you see his PSA history from the reports you and your parents acquire. Provenge is typically prescribed by a medical oncologist (MO) which I totally agree is what your dad needs.
We may be getting a little ahead of ourselves as Hormonal therapy (HT) may also be pre-requisite. HT is often the initial tool of choice for the medical oncologist.
For top folks in LA Area, for medical oncologist I highly recommend Prostate Oncology Group in Marina del Rey CA where the doctors are Mark Scholz (author of previously metnioned Body Snatchers book), Richard Lam who heads their R&D and the doctor I see Dr Jeffrey Turner.
Lots of folks on this forum use them including SteelGuy who sees Dr Scholz, Wampuscat who sees Dr Lam, compiler, and WorryWart's who are the couple who recommended me to Dr. Jeffrey Turner. All 3 MO's collaborate on every case, so does not really matter which of 3 you see as they are all excellent.
Form a medical team of one or two urologists/surgeons, one or more radiaiton oncologists, and one or more medical oncologists with as many as possible from nationally renowned PCa centers.
To avoid the syndrome of a hammer always seeing all problems as if they were a nail needing to be hammered, the medical Oncologist should be the quarterback of your team with you reserving your right to overcall their recommendations. Uurologists invariably think surgery is the answer and Radiation Oncologists usually want to zap you as main treatment.
I am sure someone else can recommend good oncologists in the upper NW corner of US.
If your parents are able to travel, I highly recommend folks I am seeing in LA which BTW is where Tall Allen lives. He was kind enough to meet with me in person and even accompany me to my office visit with Dr Chris King the UCLA radiation oncologist (RO) who is doing my 5 SBRT radiaiton fractions.
The practicality of getting it all done in < 2 weeks Mon-Wed-Fri-Mon-Wed and I am done as opposed to 7-9 weeks every day had too much appeal to pass up.
There is a site called
cyberknife.comwhich has nothing to do with surgery despite the "knife" in the title. Though Cyberkife radiaiton is not the same as Dr. King's SBRT, they are cousins with a lot of related issues. In fact Dr Chris King now at UCLA was using Cyberknife back in 2003 when he was then at Stanford.
On that site Tallen Allen is known as AllenE, and a few doctors also participate.
If you and your parents instead decide to go with high dose brachytherapy HDR with a "boost" that can take up to 7-9 weeks and on that procedure the UCLA team is Dr King and Dr Jeffrey Demannes who is another top radiaiton oncologist (RO)
Another RO I saw is also nationally renowned Dr. Mack Roach who is at UCSF (San Francisco). I saw as many as I could since I am 66 and covered by Medicare and an excellent Medicare Supplement Plan F policy, so no cost other than the travel which I was doing anyway to nearby San Jose CA to spoil grandkids.
Too much info to absorb in one reading but for future reference there is yet another site
advancedpcatalk.freeforums.net/where Tall Allen contributes a lot under the name "Allen" and also a few doctors participate.
Like you dad, I too an G9 (4+5) and was originally misdiagnosed as stage 4 metastatic to bone.
At some point your dad will need more advanced scans than standard bone scan which is relatively subjective to interpret its results anyway, and CT scan. In my Case I went to Phoenix to Dr Fabio Almeida at AZ Molecular Institute, and I highly recommend Dr Fabio.
The one advanced scan F18 Sodium is covered by insurance and proved I did not have bone mets but was suspicous for Lymph Node involvement.
The next scan not covered by insurance normally costs $3,000 out of pocket but since I was having it done same week as the F18, the advanced C-11 Acetate cost me $2,500 as a package deal. It has a 20 minute half life and is only available in a few
locations whereas F18 sodium is available in a lot of places.
The C-11 Acetate test proved that the suspicious lymph nodes were 3 micro sized LN's all contained within the pelvic region. So as a result I was downgraded from stage 4 treatable but not curable to stage 3 locally advanced potentially curable with radiaiton.
It sounds like that is your dad's G9 situation also, a little different since my PSA never got over 3.68 but I had an unfavorable PSA doubling time on consecutive PSA tests went from 1.6 to 2.62 to 3.68 which led to the biopsy in Feb 2013.
So far I have had one SBRT session last Monday where the only adverse impact is I have to take my many pills and supplements one a time which I should have been doign anyway rather than a handful at a time or I now get an upset stomach. I also had my SBRT timing adjusted to Mon Oct 6-Fri Oct 10-Mon Oct 13-Fri Oct 17-Mon Oct 20 to better align with my second Provenge Treatment Oct 17-20 and better abscopal effect timing.
There are 3 Provenge cycles Fri Lukapharesis white blood cell extraction via needle in each arm with most of the blood volume immediately redeposited. The white blood cells are sent to Atlanta to teach them how to combat Prostate cancer a similar concept to the flu shot but the 3 treatments cost about
$100,000 which is being paid by insurance.
The treated white blood cells are then infused back into one arm via needle the following Monday. There is also a foundation that pays my travel expenses from FL to LA and would help with insurance had I not been fully covered by Medicare and by United Health Care AARP.
Your dad I am sure is proud to have a son like you as his advocate.
LupronJim