How soon should treatment start for aggressive cancer?

I too have (hopefully had) aggressive prostrate cancer, I started Lupron therapy shortly after biopsy to prepare for proton therapy about 6 weeks later on Lupron.
I had 48 proton radiation treatments. The radiation oncologist can “focus” your treatments where the cancer is. I would highly recommend a second opinion and see what are ALL TREATMENT OPTIONS.
All the medical literature I read about proton therapy never refer as experimental— red flag for me !
Best.

I also think that a second opinion is in order from a center of excellence ( if you have to travel then so be it) . I am also G9, CRPC, and I would want guidance on additional treatment to proton. Good luck.

Stegner,
ADT would give you a month or two to decide. Usually adviseable with aggressive prostate cancer, it may not be in your situation. It shrinks the tumor and stops its growth and is generally recommended for two months before radiation, giving you time to look at different modalities.
Proton is no longer considered experimental. Advantages and disadvantages not established. It might be good to consult with Carl Rossi at CA Proton. He agrees to phone consultations. Rossi is the most experienced (in the world), good to talk to, and won't pressure you to decide anything.
Your physician may have been put off by your interest in Proton. Few places offer because of the expense of the equipment.
I would also recommend a consultation with Amar Kishan at UCLA. He would probably prescribe ADT rigth away. Orgovyx is a good choice. Kishan also agrees to phone consults.
An appointment in a month is too anxiety producing. Though several months from diagnosis to treatment is usual. Best luck
CA Proton (858) 215-5657
Amar Kishan 310-825-9775 https://www.youtube.com/watch?v=q4M6LJqm5_E Watch all his videos because they are full of general information.

There's no improvement in overall survival for patients who get proton-beam radiation vs SBRT, but proton-beam has fewer uncomfortable side effects (like possible bladder damage/irritation in your case), so by all means, get it if you can find it and your insurer covers it (it's expensive).

And as others have said, it's a good idea to get on ADT and maybe an androgen-reception inhibitor ASAP — unless the cancer is already castrate-resistant, those will shut it down for a while (maybe for many years) and give you time to get the treatment you want.

Did you get a Decipher test done from your biopsy? You might want to consider narrow margin (2 mm with the Mridian), 5 treatment Linac radiation machines, either Mridian or Elekta. Protect your healthy tissue as it DOES impact side effects and quality of life. Do consider more than one opinion. Doctors do have inherent biases that can greatly impact you results and lifestyle.

ASAP!!!!!

I would consider finding another Urologist or at least get a second opinion, A Gleason 9 with bony metastasis is considered (limited) oligo Stage 4. At this point I believe your care should be directed by a combination of a Radiation and Medical Oncologist. The Urologist opinion is less important, IMO. Many MO would treat you aggressively (maybe triplet therapy + radiation to prostate, pelvis and the pubic bone met) given your limited disease and G9. Almost assuredly you will be started on ADT so I would begin that ASAP. Get an opinion from a COE as soon as you can.

Well, first thing, throw the BS penalty flag on your urologist.

He violates several of my rules:

Please know your stuff. As a member of my medical team, you should have a thorough knowledge of my cancer and of the latest developments in research, and be ready to formulate a plan of attack.

Be curious. Do not close your mind to new hypotheses and don’t ignore clues that might lead you toward the best results. Please rid yourself of the temptation to make your day easier by delivering perfunctory care.

I would review the NCCN Guidelines for Advanced PCa. They provide a framework on which to base decisions regarding the workup of patients with prostate cancer, risk stratification and management of localized disease, post-treatment monitoring, and treatment of recurrence and advanced disease. The NCCN Prostate Cancer Panel emphasizes a shared decision-making approach in all disease settings based on patient preferences, prior treatment exposures, the presence or absence of visceral disease, symptoms, and potential side effects. Here's two useful links, you can find others

Mainstream treatment for de novo advanced PCa more and more involves doublet or triplet therapy.

As others have said, tests such as the Decipher can assist in decision making based on clinical data. However, what you know is GS 9, Grade Group 4, Advanced PCa , as my urologist told me on that infamous day in 2014, damn Kevin, that's a pretty aggressive cancer....ugh!

The difference is, "back in the day", imaging was limited to PET/CT and options were few, surgery, radiation, there were no ARIs, chemotherapy was a measure of last resort, treatment approaches were linear and sequential, each destined to fail, then death. Today the approach is to combine treatments, bring them forward in the disease stage and "overwhelm" it., thus the doublet and triplet therapy for de novo,

I've attached a picture which as they say, a thousand words...you want a multi-disciplinary team with you as the center of gravity!

Final thought, an aggressive PCa requires an aggressive treatment approach, just saying.

Kevin

Hey Hawk 78, If you've already published a book about your prostate cancer journey. Where can I buy it? If not, your APC (Advanced Prostate Cancer) posting are outstanding, please publish them ASAP, and I will be your first customer. Thank you.

My "Start Treatment Story." Year prior to first urologist visit. Primary Care Doc (PCD) discussed we missed annual PSA exam because lab was closed due to Covid. Lab reopens, May 2020, PSA test comes back concerning. Waited a month, another PSA results are rising above, we and I PCD don't talk numbers. Referred me to urologist. First visit led to another PSA exam, results still rising. Schedules biopsy month out. Results, Gleason 8, Stage 4. Don't really know what that means. Googled it, yikes. Urologist provides a bunch of referrals, noticed I am a Veteran and instruct me to see them first. VA, schedules appointment 3 months out. PSA goes from 6 to 22, VA Doc says not to worry, schedules another appointment 30 days out, PSA still rising. At this point I 'm in lots of pain constantly. Can't walk, sleep, lower back pain, can't sit in car seat. VA Schedule's scan 20 days out. Scan day comes and goes, waiting for call with results. Next night I end up in the ER 2am. Another scan, horrible pain, PSA 118. Hospital oncologist calls fist thing in the morning. We start treatment (Radiation) first appointment up. Cancer team established by noon. Thank god for them. VA calls out of the blue, weeks after I start treatment with my lab results to tell me I have prostate cancer. What? They apologized for not being more proactive.