Confused! Recently diagnosed with prostate cancer

swl1956
swl1956 Member Posts: 123 Member
edited January 31 in Prostate Cancer #1

No prior health issues at 67 years old, with PSA at 4.3 My urologist ordered MRI which showed "suspicious areas" He then performed trans-rectal biopsy which confirmed 3 samples out of 17 having adenocarcinoma. Gleason 3+4=7, 3+3=6, and 4+3=7 respectively. Also one other sample having HGPIN. After consulting with him, he recommends treatment of standard course of radiation. I discussed with him about chronic back pain, fatigue, and some weight loss I've been experiencing, but he claims from the images and the relatively early detection of my cancer that the chance of metastatic spread at this point was zero. He assured me there is no rush due to the slow progression of my type of cancer. Does his prognosis sound correct? Is standard EBRT the norm? He claims it has a proven track record. Any advice or opinions would be greatly appreciated. I'm a salt of the earth fella, and trying to make sense of all the information on prostate cancer and treatment is mind boggling.

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Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member

    Hi,

    If it was me before the doctor did anything I would get a PSMA PET and bone scan to confirm that the cancer has not spread outside of your Prostate. If the cancer has not spread then surgery or radiation treatment is your choice plus that of your team of doctors which should include a Urologist and a Oncologist. Prostate cancer is slower growing but the 4+3 is on the aggressive side. EBRT is one of the tools used like ie; Cyberknife or Proton radiation, Cyberknife has a good track record. Make sure you get the best doctors plus the best facilities to get the best result. I have included a link for you to study.

    Dave 3+4

  • mberry5460
    mberry5460 Member Posts: 6 Member

    I have similar numbers. PSA 4.77, 4/12 biopsy samples show Gleason 8 (4+4), I'm 63 and in great health. My experince so far has been that surgeons recommend surgery and radioligists reccomend radiologists. One guy I'm talking to is an Ultrasound guy and is the inventor of the TULSA procedure where they use a probe through the urethra and hit the cancer with ultrasound destroying the tissue. What is driving my decision is Plan B because my cancer has a high risk of recurrance. Surgery has radiation as a plan B. Radiation seems to only have cryo as a weak plan B. Ultrasound has all option available. So I feel your pain because talking to the experts seems to only give biased opinions. I think what you have to do is ask each provider what Plan A and B are and then compare to make an informed decision. Good luck my brother!

  • Old Salt
    Old Salt Member Posts: 1,505 Member

    Yes, as Clevelandguy recommended, a PSMA scan is advisable to see if any cancer metastasized to other parts of the body.

    Another yes to the proposed radiation. However, there are many ways that this can be done. Standard IMRT (40 sessions or so) is certainly an option, but there are other ways of killing the cancerous cells. There's brachytherapy (low dose or high-dose rate), and Stereotactic Body Radiation Therapy (SBRT). Especially the latter can be done in far fewer sessions. I don't know if those options are readily available to you and your current urologist may not be thoroughly familiar with these. Consequently, I advise you to also consult a radiation oncologist who specializes in prostate cancer.

    Best wishes with the decision process!

  • swl1956
    swl1956 Member Posts: 123 Member

    Thanks for your reply! My urologist did not suggest a PSMA PET scan even after I told him of my chronic back pain, weight loss, and fatigue. He seemed very confident I had no spread outside the Prostate. He did say he was sending one of the biopsy samples for some further analysis? Told me to enjoy the holidays and not worry. Lols! My next appointment with him is not until Jan 12th. As far as "best doctors plus best facilities" how does one determine that? I'm thinking a second opinion is in order perhaps at at Fox Chase Cancer Center? I live in eastern Pennsylvania close to Trenton, NJ. Any suggestions on best places or best doctors to go near my area? Philadelphia is relatively close, but I don't relish the thought of traveling back and forth there for treatments.

  • swl1956
    swl1956 Member Posts: 123 Member

    Thanks for your reply! Yeah, we're in similar boats. 😕 Your backup plan approach seems to make sense. From the little I read about the TULSA procedure, it's more applicable to lower risk cancer? All these procedures and therapies sure sound scary. Good luck to you as well. Keep us posted on your journey.

  • mberry5460
    mberry5460 Member Posts: 6 Member

    Man, you need to ask your doctor to order a PET scan. I'll tell you why. My doctor, because my PSA level was borderline and actually had dropped below 3 at one time suggested we monitor my PSA another 6 months. I insisted we do the next test whatever it was. I had met my out of pocket so he wasn't going to save me any money so he ordered an MRI. The MRI showed a PRAD 4 spot of concern. Biopsy was next and it showed I had an agressive cancer. Another 6 months and I would be looking at cancer outside my prostate. The best analogy I heard about a PET scan is looking for a match in a large lighted room. Hard to find. But turn off the lights and light the match and it becomes a beacon. This is your life. Insist on a PET scan!

  • swl1956
    swl1956 Member Posts: 123 Member

    Thanks Old Salt!

    I asked my urologist about the newer technologies of radiation treatment. His reply was that until it isclearly proven that the new technologies were as effective as the standard radiation treatments, he would recommend sticking with the standard. Sounds reasonable to an old school thinker like myself, but I think I'll take you guys advice and ask for PSMA scan before any decision and second opinion on best route to take.

  • CC52
    CC52 Member Posts: 105 Member
    edited December 2023 #9

    SWL,

    I haven't posted here for over 4 years, but today was the day to check back in. Your post was at the top, and our stories have similarities. I won't load you up with links, but if you're so inclined, please go to my profile and review my posts (click on Topics).

    I was treated with Cyberknife (SBRT) in 2014, and to date it has proven successful. PSA's consistently have remained <1, usually .01 or so. Yes, I am unabashedly biased in favor of this treatment option. I hope you can find options that are close enough for you to take advantage of.

    My best wishes - CC

  • centralPA
    centralPA Member Posts: 322 Member

    Fox Chase and Penn are both top notch treatment sites. Jefferson Health too. If you are close, I’d head for one of them. Penn has Proton beam treatment, which is the latest hot treatment method (although studies have shown it results in about the same outcomes as photon beam radiation).

    Fox had a very strong brachytherapy program, with lots of info on their website. I’d get educated on it, along with the other radiotherapy treatments.

    https://www.foxchase.org/clinical-care/conditions/prostate-cancer

  • swl1956
    swl1956 Member Posts: 123 Member

    Hi CC,

    Congrats on your success and thanks for your response! I read your posts. My biggest concern about any of the radio therapies (like many others I'm sure) is the incontinence factor. At 67, although I am in good shape for my age, I already have some minor age related dribbling which is annoying but completely manageable, I also have an anal fistula and a hemorrhoid. I'm totally frightened of the urine or fecal side effects of which seems like is inevitable with all the radio therapies? I've been reading about space-oar (a way to protect the rectum) Anyone know if this space-oar is now used routinely with all the radio therapies? I'm also curious if any data confirms that the newer IMRT or SBRT technologies are any more effective or have lesser side effects from the standard external beam radiation?

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    edited December 2023 #12

    Space OAR is used by many radiologists who perform SBRT. However, my main point is that there's (at least) one alternative: Barrigel:

    Barrigel Spacer | Minimize Prostate Radiation Side Effects

    You should inquire about that product as well. Of course, it is very important that the person who will place this barrier has a good deal of experience with the product/procedure. Same is true, of course, with Space OAR.

    PS: Whereas these barriers may protect the anal area, I don't think they will protect the urethra.

  • swl1956
    swl1956 Member Posts: 123 Member

    Thanks CentralPA,

    So many choices! I am relatively close to Fox Chase. I think I'll make an appointment there for a second opinion and ask for PSMA PET scan before I make any decisions. Not sure if I should see a urologist oncologist or a radiation oncologist? I've been reading about the focal therapies and Tulsa-Pro sounds encouraging. Not sure if I would be a candidate with one of my samples being 4+3=7? I've been watching some videos at pcri.org with Mark Scholz MD. I'm impressed with him. Very knowledgeable about all the treatments.

  • swl1956
    swl1956 Member Posts: 123 Member

    Hi Old Salt,

    Yeah! It kinda all boils down to that with everything. Getting the right person or persons that know what they're doing. Perhaps I'm a grumpy old man, but seems to me incompetence abounds everywhere at this juncture in time. 😥 Do you know if these rectum protecting devices are routinely used with all radiation treatments?

  • CC52
    CC52 Member Posts: 105 Member

    Other than the prostate, I'm blessed with good health. No urinary or bowel problems leading into treatment. I'm not aware of advances in preparation for SBRT today, but for me 9 years ago, an array of imaging prior to placement of the gold markers (fiducials) in my prostate. The markers are used to guide the machine in applying the high dose, extremely accurate radiation. This technology limits damage to other areas that may be impacted by IBRT treatments. In my case, no "oars" were used, nor were they ever discussed. I'm guessing it must have come after my treatment.

    I did have some urinary problems post treatment, but those eventually cleared up. Today, no issues with incontinence. Stools are softer than before treatment, but that's not a bad thing... never a constipation problem since.

    I was fortunate to have worldclass treatment options available in DC at Georgetown and in Baltimore at John's Hopkins. After meeting with them, SBRT was the easy choice for me, as it offered the best overall outcome and minimal side effects.

    I waited nearly a year while I researched my options before moving forward. I wish the best for you on your journey, and for a positive outcome.

    CC

  • swl1956
    swl1956 Member Posts: 123 Member

    Thanks Old Salt! Considering less bowel and rectum side effects, sounds like a must to me. Can't imagine why they wouldn't be used routinely with radio therapies?

  • Old Salt
    Old Salt Member Posts: 1,505 Member

    First of all; this is a relatively new development and the medical world is slow to adopt. Secondly, there are a bunch of papers documenting that this method has its pitfalls and, at the very least, needs to be done by someone with experience. I am no specialist, but the applicability also depends on the geometry of the anus vs the prostate. In summary, it's not that simple and worthy of a discussion with the specialist.

    Finally, the method is a significant cost factor.

  • swl1956
    swl1956 Member Posts: 123 Member

    Update: Had an appointment today with a Fox Chase oncologist surgeon. I was very impressed. He explained many options I have. He even made an appointment for me with a radiologist oncologist to discuss those options in more detail. He ordered a bone scan to make more certain there is no metastasis. He also informed me that I am likely a good candidate for Nanoknife IRE. They are conducting a clinical trial at Fox Chase on this technology. This procedure seems to be gaining ground with much less side effects when compared to prostatectomy or radiation. I'm seriously considering to go the Nanoknife route first. If the cancer comes back then Cyberknife radio therapy.

  • centralPA
    centralPA Member Posts: 322 Member

    Glad to hear of your good visit, look forward to hearing what the RO thinks.

    Curious…is the cost of treatment for Nanoknife free if it is done within the trial? Did the doc mention that?

  • swl1956
    swl1956 Member Posts: 123 Member

    Funny thing! Of all the questions I asked, it never dawned on me to ask about cost or if it was free? But I would be shocked if it is. Lols! I'll post about the Radiation Oncologist in a couple weeks after the appointment. The Fox Chase doctor I saw whom was a surgeon, did not push me towards any of the options.