Hello All:
I'm 67, Dx in 2-17 with stage 4 PCa, 1 bone met. In 6-16, PSA was at 10, Ratio of free T to total was 0.12, so my urologist recommended TRUS biopsy. Friends had told me it had been painful. so I researched heavily. Also, my urologist was associated with the local hospital, not a recognized world-class PCa centre. The TRUS 65% accuracy and a PCa network contact's 3 erroneous TRUSes before stage 3 Dx convinced me to get an MRI-TRUS fusion biopsy. No response from anyone after several attempts at the local PCa centre at 2 hospitals to my requests for intake/consultation, or referrals from family docs, and no one would requisition an MRI so I paid for one in Buffalo in 9-17 The attending radiologist felt with 95% confidence I had adenocarcinoma, large PCa tumour. I used the names of former PCa patients and some well-known PCa specialists in a walk-in doc referral to connect with a radiation oncologist in 9-16 at a local hospital clinic considered one of the 5 best on the planet. After viewing the Buffalo MRI report, the radonc ordered his own MRI, which confirmed the first MRI result. They agreed to use their MRI data to do a targeted TRUS biopsy, which seems to have accuracy similar to a formal MRI fusion TRUS biopsy. PSA had reached a max of 18 by then. Pathology report indicated Gleason 8 (4+4) in 8 of 10 cores, 4+3 in one core. Initial Dx of stage 2c PCa in 11-16 was upgraded in 2-17 to stage 4 after CT and bone scans showed one bone area highly suspicious for PCa, and several other areas of concern.
Radonc ordered Lupron injection, and I was told further treatment was contingent upon disease progress. (a period of 3-6-12 months or more before any further Tx) The most Tx I could expect would be possible pelvic EBRT and SBRT on the bone met. No direct Tx to the prostate, including no Brachytherapy, and no advanced scanning. After lengthy delays between clinic visits with radonc assistants, I felt I was being offered very little information or inclusion in my own Tx process, so, after consulting with guys in the informal PCa survivor network I had found, I spoke with Dattoli Cancer Centre in Florida in 3-17, where several of these men had received Tx resulting in 8-10 years of ongoing cancer-free living. I booked a Tx program with them for 6-17, the earliest they had, thinking I could cancel if I found promising Tx locally. In the meantime, I sought consultation/second opinion from a radonc at another acclaimed hospital who had been involved in developing new PCa Tx guidelines, focussing on the benefits of early multi-modal more aggressive intervention in PCa. After finagling a consultation with him, again facilitated by the same walk-in doc, I was told I would be continuing on Lupron, I might receive EBRT on the pelvis, SBRT on the bone met, but would not receive BrachyTx. I was also told BrachyTx and possibly other radioTx was investigational at this point. It was clear to me that, despite progressive Tx innovation recommendations in the journals, I could expect limited Tx options in my own case, and worse, two radoncs offered Tx options which, in many respects, seemed at odds with each other.
Thinking I might benefit from advanced scanning, such as PSMA PET scans, I found that the limited number of PET scanners in my area are reserved for research only, and finding no clinical trials here for PET, I eventually found A PET scanning service owned by a doc within a reasonable travelling distance. After 4-5 phone calls and messages to the contact number, I'd had no response. No response after email and phone contact attempts by well-connected guys in my PCa group, and not even after contact attempts by a radonc who knows the doc who owns the PET scanner. Unbelievable, given I was a paying customer.
Without delay, I confirmed the Dattoli program, which offers treatment with curative intent, something I could not expect at home. It cost me in the high five figures to do that, but my existing options offered little hope, since the Tx offered by Dattoli is not available to me here, at any cost.
I'll summarize my contact with Dattoli by saying that I received 37 radiation treatments with their 4D DART system, (10 follow up treatments due in 1-18 for pelvic lymph nodes only) then BrachyTx by Dr Dattoli, who has 25 years experience focusing on PCa. I received a plan with triple blockade ADT ( trelstar LHRH injections, Casodex and Avodart ) Also off-label meds for anti-tumor support, anti-cancer dietary information and many other supportive lifestyle recommendations.
No reputable PCa treatment centre can or should promise a cure, but at the least treatment with curative intent offers something beyond vague prognoses with wait-and-see minimal intervention for advanced PCa. Every case is essentially unique, although some generalizable concepts can apply to groups of patient experiences. As always, I'm hoping for the best, prepared for the worst, and I am not going to worry about my situation until I have something to worry about. In my case, I felt the the Tx being offered locally offered little hope, limited and conflicting information, and obstructive/difficult access to diagnostic and treatment resources, despite the inclusive and rich public face presented by many treatment centres. Do your research, exploit whatever resources you need to connect with the most promising treatment options, and refer to forums such as this one for information, which can be a very important and relevant addition to your war chest.
Best luck on your own journey with this lousy disease. There are many stories of success and positivity to counterbalance the negatives we so often encounter. I refuse to give in to defeat and negativity. And I hate that my magic wand and crystal ball are still in the shop.
If cancer has spread beyond the prostate, is RP best first treatment option?
First Oncologist visit
First PSMA PET scan and aftermath
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