New Diagnosis

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  • Clevelandguy
    Clevelandguy Member Posts: 794 Member
    edited August 4 #22

    Hi,

    How can a beam of radiation be very low when it enters the body and them gain intensity when it hits the Prostate and then loose intensity as it leaves the body. From a physics standpoint that does not make sense. What would make more sense is that the beam looses or maintains intensity as it travels through the body unless the beam is very strong to start with.

    If you have a good team of doctors the Urologist and Oncologist should not “push” their specialty but let you make the choice as my doctor team did. The best choice you can make is with your medical team and your unique set of circumstances is surgery or radiation or some other treatment the best choice. Second opinions are not a bad idea just to confirm previous diagnosis from your first set of doctors. Both surgery and radiation in its various forms can have varied side effects and no results are guaranteed as many here have testified. Statistics can provide what larger populations have found and you can use that as a guide but don’t think that there is a 97% chance that you will not need a pad if you choose one way or a 68% chance of no Ed if you choose another way. Results do vary with each case as users here again have testified. Good luck………

    Dave 3+4

  • ASAdvocate
    ASAdvocate Member Posts: 182 Member

    Gleason 6 is considered low risk prostate cancer.  

    Over sixty percent of newly diagnosed low risk men are now choosing active surveillance. I was diagnosed as Gleason 6 in 2009, and have had zero progression of my pathology.  Why risk the often lifelong damage from interventional treatment if you don’t need it?

    The just-released guidelines from the American Urological Association and the American Society of Clinical Oncology state that active surveillance is the preferred treatment for low risk prostate cancer. They rate that as supported by Level A evidence.

    However, first biopsies often miss higher grade cancers, so an MRI and a targeted confirmatory biopsy within six months is recommended to help assure that you are correctly diagnosed.

    https://www.auanet.org/guidelines/guidelines/clinically-localized-prostate-cancer-aua/astro-guideline-2022?fbclid=IwAR1GNIWfqOK3GGjoqvVS4SX7JEPb_lidDEpg0vLDgaJlbP0yaUhEPQENjxY

  • Old Salt
    Old Salt Member Posts: 983 Member
    edited August 5 #24

    Some of the suggestions in this thread are not Standard of Care (in the USA). The following is copied from the (2022) AUA/ASTRO guideline on prostate cancer:

    I copied the most relevant conclusions pertaining to this thread:

    For patients with low-risk prostate cancer, clinicians should recommend active surveillance as the preferred management option. (Strong Recommendation; Evidence Level: Grade A)

    For patients with favorable intermediate-risk prostate cancer, clinicians should discuss active surveillance, radiation therapy, and radical prostatectomy. (Strong Recommendation; Evidence Level: Grade A)

    Clinicians should inform patients with intermediate-risk prostate cancer considering whole gland or focal ablation that there are a lack of high-quality data comparing ablation outcomes to radiation therapy, surgery, and active surveillance. (Expert Opinion)

    I bolded the first one because it seems the most appropriate as already pointed out by ASAdvocate. However, if this is not acceptable, the second paragraph becomes the relevant one.

  • Danno99Advocate
    Danno99Advocate Member Posts: 8 Member

    Neilm,

    I applaud you on finding out treatment paths upon being diagnosed with PC. Good thing is you are AS. You have time. Gather it all up and do research. Listen to everyone. If i could turn the clock back, yes, I wish I did that while AS. A big mistake.

    Old Salt, Read your comments, Simply put...let's agree to disagree.

    I am not disagreeing with your bold statement....That part is true. however, it is your next paragraph....I don't agree with what you posted concerning favorable intermediate risk-cancer.....iHIFU, Cyberknife & Proton Beam Therapy are all FDA approved in USA. Great success outcomes on all. Depending on whether you have insurance, your place of employment may pay for it. If retired, I would assume the cost would be paid for by the patient. Our medical system in Canada is strained...that said, it is called MSP in British Columbia. They will pay for Radiation or Removal of the whole prostate. They will not pay for HIFU, SBRT, or Pet Scans. We do not have Proton Beam Therapy up here. The machine is very expensive. Cyberknife (SBRT) we do have only one place in Canada that does this....(Ottawa General Hospital). Machine costs 6-7M Can.$ I think allot of this is about cost with our Medical.

    When you are in AS....that's the time to find out ALL TREATMENT PATHS....Pros/Cons....write them down. Talk to facilities and get testimonials from patients whom had that treatment. Take all comments with urologists/pathologists with a grain of salt. Write it down. Get a second opinion. Yes, I have heard allot about JHU and get Dr. Epstein to give his opinion on your slides. I concur/Good Advice.


    Best & take care everyone! 😊

    Danno

  • neilm
    neilm Member Posts: 21 Member

    Thanks everyone for the updates, I took the weekend off. I did have my meeting with my Urologist Friday. He started with advising that I had Gleason 3+3 in the apex left area. He went on to describe the three treatments. AS,RP, and Radiation. He referenced Cyberknife at one point as experimental, perhaps he misspoke or meant dosage experimentation. He advised that radiation therapy may preclude successful prostatectomy in the future ( which I knew ). The discussion moved towards AS, I told him I would like more certainty on the biopsy and he suggested the Prolaris genetic analysis on the tissue and I agreed it would give me more confidence. We will wait a few weeks and get that piece of the puzzle. I did discuss second opinions, he was open to the possibility and suggested another look could be taken at the prostate biopsy data which I will have done prior to any decisions ( although he said two pathologists had reviewed mine ). I am getting a notion in my head that its

    1) Way to early to talk about Prostatectomy

    2) Too early to consider radiation as it too has some side effects it seems in all versions. If I were to go with radiation Proton therapy seems like a leading candidate.

    3) The ablation therapies out there seem to warrant a deeper dive. If Laser or HIFU could eliminate my single tumor at low risk of side effects it seems I would still have my full range of options ( Radiation or RP ) down the road should I have a failure. Most information I can find show intermediate success of these therapies at about 75%. If this is accurate it would seem like a reasonable gamble considering the risk. I am retired so radiation and RP are covered, I suspect the targeted ablation would be out of pocket. It may however be worth it. Feeling a bit calmer about all of this and creating the best plan I can. I am meeting a friend later this week who is suggesting he has knowledge of a chemotherapy solution. The more I read about grade 6 though I do have thoughts of just leaving it alone, I will be 67 shortly.

    Remember when we just went to the doctor and they told us what to do..

  • Old Salt
    Old Salt Member Posts: 983 Member

    I fully endorse your idea to give a treatment plan suitable for you, more thought.

    One thing that struck me is the 'statement' from your urologist that Cyberknife (a version of Stereotactic Body Radiation Therapy) is 'experimental'. It isn't anymore:

    Long-term Outcomes of Stereotactic Body Radiotherapy for Low-Risk and Intermediate-Risk Prostate Cancer - PubMed (nih.gov)

  • Danno99Advocate
    Danno99Advocate Member Posts: 8 Member

    Further to what Old Salt said, yes...this is 100% true. Cyberknife SBRT has been around for some time. Results are unbelievable to say the least. As stated, in previous comments I made.....I've talked to 3 different individuals (all in Seattle area)...All are extremely pleased of outcome. No ED, No urinary problems, No diapers, No bleeding from rectum....no issues Period.

    Urologists...IMO...typically shun all treatment paths out there except Radiation and RP. They are surgeons and they want to remove prostates!

  • ASAdvocate
    ASAdvocate Member Posts: 182 Member

    SBRT/Cyberknife was FDA approved for the treatment of prostate cancer in 2001, over twenty years ago. It’s efficacy in treating low and intermediate risk cases is well documented.

    There currently is some experimentation with dosages to treat high risk cases, but that is a separate situation.

    That uro probably thinks that any treatment less than a hundred years old is “experimental”.

  • neilm
    neilm Member Posts: 21 Member

    Just a final comment on my journey. Lots of research has led me to believe the following

    1) PCA as a disease requires more effort than any illness I know of on behalf of the patient to design their own best treatment.

    2) Active surveillance still is underutilized and some patients receive overtreatment for their disease stage due to fear.

    3) While prostatectomy has a place for some cases , particularly for very large prostates it seems to be overprescribed. While side effects are not always extreme, sexual function in particular for most men will not be the same, the definition for function includes those who use Viagra. Very few recover to the same level of functionality they had prior to surgery. Leakage seems to be a bigger problem than other treatments ( including during orgasm ) . Artificial urinary sphincter (AUS) in extreme cases can help but they may leak as well. My perspective on these issues is at 67 years old. If I was a 50 year old I think a lot better recovery could be expected with Prostatectomy . Quality of surgeon is critical and demands research.

    4) Cyberknife and Proton Therapy seem to be an excellent choice, with performance that likely can exceed Prostatectomy. Still creating an ED risk over time of 50% for a 70 year old, that is just a reality that I need to be prepared for.

    5) I expect focal therapies to improve but their ability to target accurately is a question mark for me, I am sure someone will combine laser, HIFU etc with the positioning smarts of Cyberknife someday and that I believe will be a game changer.

    For now I will

    Go on AS since I am still 3+3 with a rising PSA

    When I am 3+4 or more I will seek Cyberknife or Proton Therapy. If it is more than a year or two down the road I will reexamine all of the above. In the meantime I will do another biopsy at one year and then request annual MRI exams while monitoring PSA.

  • Old Salt
    Old Salt Member Posts: 983 Member

    You have done your homework and made a decision; a good one, IMHO.

    I largely agree with your notes but must point out that proton therapy hasn't been documented to be 'better' than other radiation therapies. It requires MANY sessions and is, consequently, WAY more expensive.

  • neilm
    neilm Member Posts: 21 Member

    Thanks for the feedback Old Salt. I appreciate the effort you expend to help others on this site, it is a truly kind act. Proton therapy seems to have a lot of "buzz" . Targeted protons creating less damage to surrounding tissues, efficacy that seems to match Cyberknife but I am not sure there is hard data that indicates it is better. I don't know of data supporting less damage to surrounding tissues either. You are correct about costs. If data develops over time that proves PT claims true then perhaps it would be worth it. If I look at it today it seems to be equivalent to CK with promises about its performance that need validation. I think they have reduced from 44 sessions to 22 but CK is 5 so that's a big advantage. If you asked me to pick right now I would say CK but if I get a year or two maybe more will be learned on PT. On another topic it's amazing how a few months of exploring this disease and its cures have been calming, very scared a few months ago and now I feel like my feet are on the ground ( still very aware of my condition but less fearful ). I see a few bloggers like yourself here who are deeply experienced and very involved with newly diagnosed cases. I imagine there are more than a few men who should thank you for the significantly improved quality of life you have helped them sustain through your comments!

    Thank You

    Neil

  • JP63
    JP63 Member Posts: 32 Member
    edited September 18 #33

    Hi there:

    Where the tumor is located is very important.

    In my case the tumor was very small. It did not show up in a 1.5T MRI

    In a 3T MRI it did show up but no extra prostatic extension!!!.

    It was found only in 2 cores of 16. PSA was low it went from 2.9, 1.7, 2.0, 2.6b etc etc.

    The tumor was small 6 mm but very close to the capsule (abutting the capsule)

    I had surgery and when they did the biopsy of the whole prostate they downgraded it from 7 (4+3) to 7 (3+4), that part was good.

    Maybe I could have even opted out for AS!!!.....but.....

    But when they looked thru the microscope the thing had went thru the prostate capsule so now they staged it at 3Ta......

    Well, at least I had clean margins. Now I am waiting for the 3 months PSA results. Hopefully it will be 0. If not radiation and hormone therapy.

    I was thinking of having HIFU since it was so small and localized but got worried since it was so close to the capsule.

    Thanks God I had surgery.

    HIFU can not treat it outside of the prostate capsule.

  • Old Salt
    Old Salt Member Posts: 983 Member

    Thanks Neil for your gracious complement. I am just one individual who TRIES to be informative, but there are several others who have made this forum useful to others.

    Did I mention Vasco 😉; he has been contributing longer than anyone currently active, I believe.

  • neilm
    neilm Member Posts: 21 Member

    Thanks JP63, glad that your surgery was successful and that the cancer was contained. It seems you never know for sure, this is all a bit of a gamble.