I would greatly appreciate your opinion.

Igor1821
Igor1821 Member Posts: 5 Member

I am 70 years old with good health.
My prostate biopsy indicates Gleason 3+3 well-defined in 5/12 (40%, 50%, 20%, 60%, 15%) all on the left side.
In 2/12 perineural permeation present.
Rectal examination indicated hard movable parts and the biopsy showed well-defined edges.
Diagnosed since 2020 with BPH Grade II by annual ultrasounds and PSA from 2020 of +/- 4.6 almost without variation in annual controls. Last test in August 2024 of 4.64.
Pelvic and thoracic CT scan indicates no extension outside the prostate.
Only symptom is urinary difficulties typical of BPH.

What do you recommend: Active Surveillance, Radical Prostatectomy, or Radiotherapy?

I really appreciate hearing your opinions and experiences to make the best decision.


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Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,205 Member

    Hi,

    Tough call with the PNI. There is a new robotic removal technique that only makes one incision which helps mitigate damage to nerves and other surgical damage. Active surveillance in my humble non medical opinion is not a good idea due to the PNI. If it was me I would go with robotic surgery that will get rid of the PNI and also your BPH but that’s up to you and your medical team. I had surgery back in 2014 and don’t regret it. I would think radiation might aggravate the PNI nerves and not do much for your BPH. Get a great team of doctors+the best facilities to get the best results . Good luck……

    Dave 3+4

  • Wheel
    Wheel Member Posts: 161 Member


          I was very scared of surgery and the side effects  including just the thought of a catheter for 10 days. Both surgery and radiation have side effects, some overlap such as incontinence and ED and others like rectal are tied to radiation. ED after surgery is right away, while it will come later during Radiation treatment or after treatment.  Today versus years ago, leaps in technology have come to minimize side effects in both procedures. Surgery with Puboprostatic ligament sparing, and Retzius sparing along with procedure technique to reduce or eliminate incontinence. Nerve sparing for ED issues and Robotic Single port entry for overall quicker surgery recovery. Now with Radiation, the development of Space Oar Hydrogel is used to minimize rectal side effects and focal Radiation procedures can also.


    For me I ended up choosing Surgery at my age of 70 and good health. I also knew that I would still have Radiation as a backup and approaching 71 the window to receiving surgery was getting closer to close regardless approaching 75 but sooner if my health were to deteriorate for any other reasons and preclude surgery. Salvage Radiation is much easier than a Salvage surgery as the surgery is considered much more difficult and done only by certain surgeons very experienced in that salvage surgery. Twenty years ago I had non-hodgkins lymphoma and my Oncologist recommended a lower chemotherapy regimen than CHOP saying we wanted to keep that in reserve for relapse or transformation. I liked having that as backup and I was blessed to go into remission and remain.

    Another reason I chose surgery was that while I was in surgery after the prostate was removed and the tissue was removed to check on margins, the tissue was sent immediately to the hospital pathology for staining to see whether I had clear margins. This clearly delays the closing of the surgery and in my case my margins did come back positive which surprised the surgeon because based on the hundreds of tissue he visually has seen in surgery which he did not see anything unusual and the PET scan saying it was contained within the prostate really was a surprise. Many Surgeons do not bother with this and at your post surgery appointment they give you the disappointing news that you have positive margin. Well my Surgeon was then able to go back in for 2 more hours delicately continuing nerve sparing and cut for more margin and at my post surgery appointment I was told the final margin was then negative. Without that additional step of my tissue going to pathology I would have been told at my post surgery appointment that unfortunately you have positive margin as many are. His afternoon surgery appointment got delayed by two hours by the surprised breeching of the capsule by the cancer. Immediately upon my catheter coming out I was continent and have minimal ED side effects 90 days out with more improvement expected. I was up walking immediately after surgery and did not even spend that night after surgery in the hospital. Within two weeks I was back to normal activities like driving and getting out and around and traveling. Although my catheter was in for 10 days that was due to a 3 day holiday period but that allowed my surgery to continue to heal. Now on a downside I did get a blood clot in my leg from the surgery likely due to my surgery taking much longer than expected but blood clots are a side effect of any surgery not tied to prostate surgery. I am extremely happy the with the surgery route, but definitely research your surgeon and find out their procedure and don’t hesitate to try and find the best surgeon at two different hospitals.Anyways my thoughts.

  • Marlon
    Marlon Member Posts: 127 Member

    Yes, tough call. I will say that the benefit of no more BPH helped sway me too chose surgery. But note it's still major surgery. I would make sure that I understood all the potential side effects of radiation, and it would make a difference to me if ADT was going to be part of treatment in a negative way.

  • Wheel
    Wheel Member Posts: 161 Member

    That was also another major reason I went with Surgery. When I refer to Radiation I just in my mind add on the 18 month ADT treatment and usually forget to mention that. I was Gleason 8 and the Radiation for me was going to include the ADT which I really did not want.

  • Igor1821
    Igor1821 Member Posts: 5 Member

    Permeation means that the cancer cells are near the nerves. Invasion means they are inside. All parameters indicate that it could be under active surveillance. The problem is that with cancer, you never know...

  • Wheel
    Wheel Member Posts: 161 Member

         I shared earlier my thoughts on Surgery and Radiation and my decision on Surgery. At the time with my Gleason 8, AS was not available to me but I was hoping earlier it might be as I had only one core Gleason 8 and my other cores were 6 and two favorable 7’s. I sent my cores to John Hopkins for a second opinion hoping my 8 would be downgraded to a 7 and I might be able to consider AS. AS certainly is extremely valuable for quality of life issues such as incontinence,  ED and rectal issues. It was overwhelmingly shown prostate cancer patients were over-treated in the past with surgery and radiation and incurred these side effects when they might have never needed treatment and never incurred side effects that affected quality of life and hence AS.
     Unfortunately not everyone can remain on AS and that is the need for continued regular surveillance through PSA checks, MRI’s and additional biopsies. Also unfortunately no one knows exactly when that tipping point at what month or year the cancer needs treating. Many on AS are devastated to hear they now need treatment as it appears the cancer has left the capsule. That is the point, it is really difficult to know when that point is going to occur, but if caught early through active surveillance most treatment options including surgery are still available, even if it has just breeched the capsule. I think many people on AS believe it will always be caught just before breaking out, but more likely it is caught after that, because the cancer for the patients who ultimately will have to leave AS, that cancer is growing. The belief in AS is that this gives patients possibly many years of quality of life with no incontinence and ED and also many times in those patients on AS that AS did not work maybe they have received an additional year or two of no side effects and enjoyed a higher quality of life. That becomes the trade off if you are able to accept, that if you are on AS and it fails and although the cancer might have left the capsule you will get successfully treated as if you immediately were treated in the first place. The difference is for maybe two additional years you enjoyed the highest quality of life but with the trade off knowing that you have cancer inside of you that could be growing. Understandably that is difficult for some to accept. Also new treatments and techniques are always in the pipeline that if you are able to hold off on treatment it might be something that becomes available to you. AS is a difficult decision but its a trade off. Just wanted to finish my thoughts when I looked at AS.

  • Marlon
    Marlon Member Posts: 127 Member

    Wheel's comments are interesting. In hindsight, I realized that all those diagnostic tools - MRI, biopsy, PSA levels, etc., - are just a guess. And they wont really know what's going on until they go in and see. My docs predicted that either RT or surgery would give equal outcomes as to lifespan. I am glad I chose surgery because my cancer turned out to have been more aggressive than had been predicted.

  • Wheel
    Wheel Member Posts: 161 Member

    Marlon,

    You are absolutely right, nothing is really known until you get in. After they went in for my surgery I did get my wish, my cancer got downgraded from a Gleason 8to an unfavorable 7(4+3). I also received a post surgical pathology that I had cribriform pattern which in hindsight makes me feel 100% in my surgery decision. That is not what you want to find out later if I had chosen radiation and the Radiation had failed and they blame well it turns out you had cribriform which is known to be more resistant to Radiation.

  • Igor1821
    Igor1821 Member Posts: 5 Member

    Yes, very interesting and I think you are right. Surgery is irreversible and radiotherapy is very invasive, and one never knows how much it will affect you. Active surveillance can be sufficient for years and allow for a good quality of life, and there is always the option of intervention if necessary, as long as it is, in principle, a low-grade cancer

  • Wheel
    Wheel Member Posts: 161 Member

    Igor,

    One other thing to keep in mind about AS, the older you get, you do not want to risk missing out on a treatment. If you do go AS, any doubts or appearance it is not working don’t hesitate to move to treatment as if you decide you want surgery you don’t want your age at that point to preclude surgery or your overall health has changed that preclude’s it.

  • Igor1821
    Igor1821 Member Posts: 5 Member

    Yes, it is very complex. I need the results from the second pathologist, the pelvic ultrasound, the pelvic and thoracic CT scan with contrast, and with all this, I will see another urologist and an oncologist.

    And of course, also asking for advice from my new friends in the group.

  • Wheel
    Wheel Member Posts: 161 Member

    good plans. I consulted with two Surgeon Oncologists and two Radiation Oncologist’s!

  • iloweredmypsa
    iloweredmypsa Member Posts: 3 Member

    I am Gleason 3/4 and not liking surgery or radiation, chose AS while improving diet and taking supplements. I lowered my PSA from 6.4 to 4.7 then 3.3 then 2.45 over 11 months. Do these superfoods along with key supplements make a difference? It is worth it to me to find out.

  • Igor1821
    Igor1821 Member Posts: 5 Member

    Could you please tell me more about superfoods and key supplements?

  • iloweredmypsa
    iloweredmypsa Member Posts: 3 Member

    Sure. From my research, two foods stand out as superfoods, pomegranates and broccoli. Pomegranates have a lot of great ingredients, and pomegranate seed oil (pso) earned my focus based on a substantial amount of detailed research. Furthermore at the molecular level, pso contains about 65% punicic acid, which research reveals as a powerful PC fighter. Other pso research demonstratess that elegiac acid and luteolin work well with pso, so I join them all together for one good PC fighting strategy. A second strategy revolves around ursolic acid, also from what I read in the reasearch is another powerful PC fighter. I get my ursolic acid from ground rosemary, a rosemay supplement, a ursolic acid supplement, and cranberry juice. Its main problems are it's lack of absorbability and a limited duration in the blood. So I add Black Pepper for the piperine, rapeseed oil, and hops to improve absorbability. The hops contains xantholhumol, which appears to be the key active ingredient. So I also add a stand alone xantholhumol supplement. The broccoli contains sulforophanes, a known PC fighter. These are the main strategies I am currently employing in what originally was an effort to extend my PSA doubling time. It appears it is working better than expected, as instead of just slowing the rise, my PSA number has been dropping. I hope an MRI will reveal whether these and my other treatments are obscuring an increasingly more massive tumor, or has the tumor stopped growing or maybe actually decreasing in mass . This is a snapshot view of my activities. A more complete month to month activity log may be found at iloweredmypsa.com. I wrote the content, and my kids set up the site.

  • Clevelandguy
    Clevelandguy Member Posts: 1,205 Member

    Hi,

    The Perineurial stuff in my humble non medical opinion is nothing to mess with. If you go AS pay very close attention to how close the cancer is to the nerve bundles in future biopsies/ diagnosis testing. I had PNI and had my Prostate removed. Don’t know what my future holds but at 10 yrs plus with remission I am glad I did the surgery.

    Dave 3+4

  • iloweredmypsa
    iloweredmypsa Member Posts: 3 Member
    edited December 6 #18

    This next MRI will be some key information on how to proceed. Thank you for your opinion. I am already 69, and I am all in on my approach which perhaps several have tried and it's unclear who if anyone has succeeded. Each approach has its risks. Hopefully my lowering psa is a good thing, not just a masked result of my action, and that the insurance company will still cover another MRI even though my PSA is well below 4. I wish there was more information on individual cases so I could better evaluate others who might have been or are trying the same thing that I am. The.Next.MRI.

  • centralPA
    centralPA Member Posts: 341 Member

    Did you have an MRI? What was the size of your prostate? The PIRADS score?

    How is your health otherwise? You said it is good. Life expectancy? Typical for your family?

    Where was the cancer, peripheral zone (PZ), Central Zone (CZ), Transition Zone (TZ)? It is usually in the PZ.

    Did you get a Polaris or other genetic test? Results?

    I'm on AS. It's a bit of a highwire act, but I'm a risk taker.

    My prostate was 140cc, PSA was over 5, MRI identified a thing of interest, PIRADS 4. Score was 3+3=6, bumped up to 3+4=7 on review by Hopkins. Favorable Intermediate.

    I also had significant BPH with symptoms. Chose to have a HoLEP procedure to resolve those, which also reduced my prostate size to around 40cc? Made me a candidate for radiation (my chosen path). My PSA dropped down to 0.4, and has now settled in at around 1.0. I have an MRI scheduled next week to see what's up, as it has been a year and a half since the HoLEP.

  • centralPA
    centralPA Member Posts: 341 Member

    @Wheel , you wrote " I think many people on AS believe it will always be caught just before breaking out, but more likely it is caught after that"

    Do you have the data to back that up?

  • centralPA
    centralPA Member Posts: 341 Member
    edited December 6 #21

    Sorry for spamming your thread. By your description you are…

    • T2b (Cancer on more than half of one side, but not both sides)
    • Grade Group 1 (3+3=6)
    • Low PSA

    This puts you in Favorable Intermediate status. That's my status too.

    The NCCN guidelines are worth getting acquainted with. For Favorable Intermediate the 2024 guidelines show AS as the preferred initial therapy. This has evolved even since my diagnosis, and even over the last two years. The 2022 guidelines just listed AS as an option for Favorable Intermediate.

    It's a lot more nuanced, though, the recommendation for Favorable Intermediate. Worth reading both the patient info and the doctor-specific data.

    Links to patient info

    https://www.nccn.org/patients/guidelines/content/PDF/prostate-early-patient.pdf

    Link to doctor info

    https://www.nccn.org/professionals/physician_gls/pdf/prostate.pdf

    If you download this one, go to the discussion on Page MS-16 for lots of good info.

    You need a free account to actually access.

    Cheers!