Second Opinions in Prostate Cancer

If you are reading this, then you are either an advocate for yourself with concerns about your health as it relates to prostate cancer or you are an advocate for someone else that may be dealing prostate cancer. Either way, you are an advocate and one of the most valuable tools for advocacy can be the option of a second medical opinion as it allows you to learn more about the disease, diagnostic tools, and appropriate treatment options.

There is an old saying that goes “when the only tool you have is a hammer, everything looks like a nail”. If your urologist is also a radiologist and you test positive for PCa he or she may steer you towards having treatment with radiation. If your urologist is also a surgeon he or she may towards having treatment with surgery. I personally believe that most physicians intentions are honorable as they’ve seen positive outcomes and have confidence in their skill and training. Realistically each type of treatment has its own risk, especially when it comes to post treatment morbidity such as potential problems with ED, continence, and limitation of salvage treatment options if the first course of treatment fails. Getting a second opinion regarding an alternate course of primary treatment can be very valuable and often eye-opening.

Best wishes to everyone who reads this and is dealing with prostate cancer either as a patient or as their advocate.

I had an elevated PSA so the VA sent me to community care for an MRI. I had the MRI but the urologist left that hospital and I was referred to another hospital where they wanted their own MRI. They also gave me a biopsy which confirmed PC. The options were radical surgery or beam radiation. My VA urologist suggested radioactive seeds. I'm going to OU Medical Center for yet another MRI and a consultation with a urologist who does the TULSA PRO procedure. From what I have researched the TULSA PRO has less side effects than other treatments I've investigated. OU is over 3 hrs. away but I"m concerned about quality of life after treatment so I'm hoping I'm a candidate for their procedure.

May I respectfully ask a few questions?
What was/is your latest PSA number?

What kind of biopsy did you have? TRUS (transracial) or transperineal? Random 12 core or MRI guided?

What was your Gleason score?

Did you have a Decipher or similar genetic test to assess your risk for aggressive cancer?

Treatment for PCa is not a “one size fits all” deal so understanding your risk for aggressive disease may be very important to give you the best chance for addressing prostate cancer once and for all.

rick137: as indicated by robertmizek , doctors are dedicated but not infallible and they have built in biases. Your Gleason numbers, age and tests you have had might help the group comment further.

I had a prostate MRI, ct guided transrectal biopsy (would do fusion guided next time) was 69 when treated, Gleason 3+4, psa of 10.2 and a low risk Decipher test score. My urologist gave me a choice of radiation or removal. I spoke with 5 radiation oncologists, 3 from centers of excellence and the other 2 trained at a center of excellence. I had done research on different types of radiation machines and removal. I chose radiation and specifically, an MRI guided narrow margin Linac machine. The radiation oncologists all had access to the Mridian machine which uses 2 mm margins VS 3-5 mm for other types of radiation machines including, Proton (which was almost my first choice), which I also had access to. I had 5 hypo fractional treatments and finished in February 2023. The Elekta was another narrow margin machine choice for me but the Mridian had more robust features at the time, auto turn off, dynamic real time planning.... My goal, besides "curing", was reduce the radiation exposure to healthy tissue as that impacts side effects and maximize my quality of life. I had minimal urination issues after treatment and was on Flomax for a month or so after treatment. My last month's psa was .9, which my RO seems happy about as I still have a prostate. Every PSA test after treatment will give rise to a bit of anxiety as one wonders if there will be a biological re- occurrence.

All the radiation oncologists were fine with my choice. One suggested ADT before radiation because of the nccn.org guidelines, which most doctors follow. One RO told me that if I wanted to use their institution and the Mridian machines dynamic planning capabilities (real time re-mapping with the built in MRI) to go somewhere else, which I did. All were supportive of spaceoar as a spacer, though now, there is also Bioprotect. One wanted Spaceoar and fiducials in case the machine broke down, which it did not.

Take one day at a time, keep coming back here, research the margins, the machine and the doctors skill/experience specifics. Quality of life is a BIG deal. Radiation tissue exposure (margins) is a BIG deal. Do have the Decipher test as doctors do use it to decide on treatment recommendations. Use telehealth for your consultations where you can. DM me if you have any questions and I am happy to further explain my experience and reasoning through messaging or on a phone call.

I was diagnosed with PC last August, shortly after turning 51. My PSA was at 6.8, MRI, followed by MRI guided Transrectal biopsy found 2 sections with cancer, both Gleason 3+3. The doctor who performed the biopsy suggested active surveillance, but didn't adequately answer some questions i had, so i sought a second opinion. I went to the Mayo, where all of my results were reviewed and "mostly" agreed upon. There were a couple of things about the MRI results that the Mayo had concerns with. In March, 2024, i had an MRI at the Mayo, followed by an MRI guided transperineal biopsy. The results: The mayo confirmed the 2 sections with Gleason 3+3, but found 2 more sections where they were 3+4, one of which 'may' have (or is trying to) extend outside of the capsule... So it's no longer active surveillance for me. Due to my age, radiation isn't an option, as it could cause problems later in life, so i will be undergoing Robotic assisted radical prostatectomy next week. One day before my 52nd birthday (yep, that'll be a birthday to remember). Had i opted not to get a second opinion, and stayed with active surveillance, who knows where I'd be in a year or two. Hopefully it'll be determined that everything was contained within the prostate, and i can close this chapter in my journey through life. I'll update with my results in the future.

robertmizek, PSA 7.4, biopsy, transrectal with MRI or ultrasound fusion. However they told me they were going to use transperineal. ? Gleason grade group 3, Gleason score 7(4+3) 0.7cm. Gleason grade group 3 Gleason score 7 (4+3) 0.2 cm. Gleason grade group 1 Gleason score 6 (3+3). 0.2cm. overall PI-RADS score of 5. I don't see anything about Decipher.

Thank you for joining our group and welcome. Sorry about your diagnosis. You were wise to seek out a second opinion, especially at Mayo. Based on my personal experience I agree that RP is a smarter option than RT given your age and the fact that there are four lesions and possible EPE to deal with. In contrast, based on a single mapping biopsy and an MRI, I did not seek a second opinion and as a result significant high risk disease was missed that may have been discovered after a second biopsy.

There likely will be some short-term challenges ahead like partial urinary incontinence and ED. I suggest you read up on doing heels to strengthen your pelvic floor and start those as soon as possible. That will go along way towards getting you on a fast track for continence. As for issues related to ED, you can check with your surgeon to see if he plans on doing nerve sparing RP, which again will go along way towards restoring sexual health and quality life.

There’s a lot of great information on this Forum. It’s an amazing resource and I hope you find it as helpful as I have found it to be if you can’t find the answer to a question you have you can always start a new thread, but you’ll be surprised at how much is already out there!

Best wishes to you for a successful operation and becoming cancer free.

Thanks for sharing your information. The fact that you have three identified lesions, two of which that show intermediate risk disease makes me believe that whether you would be treated with Brachytherapy (seeds) or TULSA PRO (specialty HIFU) your care team is going to want to treat the whole prostate and not just lesions within the prostate. I understand your interest in the TULSA PRO procedure to preserve sexual health and avoid incontinance. I looked into it myself and was unfortunately was not a candidate. Here’s a link to more information about it from a source I trust:
https://youtu.be/TjdV5qAEbdA?si=oQ6yK7ByAnSIpg1Q

The question I would be asking my prospective health care provider is “what treatment options will be available to me if Cancer returns. For example ifyou have RP and cancer returns you still have radiation, ADT, and chemotherapy available to cure or manage it. If you choose radiation for primary therapy then surgical removal of the prostate is typically off the table and often additional radiation to the prostate and the prostate bed is off the table as well leaving only ADT and chemotherapy as salvage treatment options. I’ve read numerous published medical papers that plainly state that primary treatment for PCa fails 30% of the time or more so it’s always in your best interest to understand what your options are should things not work out the first time.

Best wishes to you for good health and a cure!

I watched the video you posted and if TULSA Pro is out of the question my next option Brachytherapy may be my next choice.

Thank you for your reply. Yes, my surgeon said his team focuses on nerve-sparing RP. Still makes me nervous as heck, though, but i do feel im in great hands at the Mayo, and im hoping this is but a bump in the road, long-term.