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    Old 05-05-2022, 08:01 AM   #1
    youngandslim
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    New cancer diagnosis - how to decide

    Hi,
    I have a new prostate cancer diagnosis and wondering what other people similar to me have done. Why you decided on your particular treatment and how it ended up for you.

    #A. Prostate, right apex, x 2, needle core biopsy:
    Benign prostate tissue
    #B. Prostate, right middle, x 2, needle core biopsy:
    Prostatic adenocarcinoma, GRADE GROUP 1, Gleason grade 3+3 (score 6)
    1 of 2 needle cores are positive
    5 % tissue involvement
    #C. Prostate, right base, x 1, needle core biopsy:
    Benign prostate tissue
    #D. Prostate, left apex, x 2, needle core biopsy:
    Benign prostate tissue
    #E. Prostate, left middle, x 2, needle core biopsy:
    Benign prostate tissue
    #F. Prostate, left base, x 2, needle core biopsy:
    Benign prostate tissue
    #G. Prostate, Index Lesion x 5 Right PZ base lat, needle core biopsy:
    Prostatic adenocarcinoma, GRADE GROUP 2, Gleason grade 3+4 (score 7) (estimated < 5 % grade 4)
    4 of 5 needle cores are positive
    80 % tissue involvement

    Thanks,

     
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    Old 05-05-2022, 11:16 AM   #2
    Prostatefree
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    Re: New cancer diagnosis - how to decide

    Get a second opinion on the Gleason grading. Most send it to Epstein's Lab at John Hopkins.

    You can also get genetic testing of the G4 to try to determine it's aggressiveness. Aggressiveness varies within the Gleason grades. Not all G4s and G5s are created equal.

    I did not do either of the above two suggestions. I was unaware they were available or useful.

    My biopsy showed I had a lot of G6. I had some BPH and developing incontinence from it and a family history pf PC, at a reasonably young age (62), so I chose to treat it. Choice of treatment is another converation. After surgery when fully examined, it actually turned out to be a lot of G3+4.

    So far, my treatment choice has been successful. No lasting side effects and PSA is undetectable below 0.02 after 6 years. I am very satisfied with my choices to treat and doing so with surgery. I have accurate pathology information from a full examination of the removed prostate, seminal vesicles and adjacent lymph nodes. This is useful for identifying future potential hot spots should I have a recurrence. And, I still have radiation and ADT (androgen deprivation therapy) available to me if I require follow up treatment.

    Surgery and radiation have similar long term "cure" (rates of recurrence) outcomes, but different timing of side effects. Surgery side effects are immediate and recover within a year if all goes well. Radiation immediate side effects are short term with the potential for long term side effects much later.

    As a 62 year old with a life expectancy close to 90 and an intermediate cancer risk, I wanted the longer treatment game plan beginning with surgery, then radiation, then ADT. I wasn't comfortable starting with radiation. And, my personal preference was to avoid radiation and ADT as long as possible.

    For you, cancer at the base (what we would think is the top) is an increased risk to ascend into the seminal vesicles and up and out. You have a slightly increased risk due to this location of your G7.

     
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    Old 05-05-2022, 07:36 PM   #3
    Terry G
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    Re: New cancer diagnosis - how to decide

    Y&S, I had a low risk diagnosis and wanted to treat my cancer early. The side effect risks of surgery were simply too high. Radiation offered a very high success rate with much less side effect risks. It boiled down to SBRT or HDBT. Our evaluation suggested both to be effective, safe, and convenient. We chose SBRT and have no regrets.

    Unfortunately this disease is one in which there is no perfect treatment and one size fits none. I encourage each recently diagnosed guys to research all the options and find the treatment that is best for their situation. This forum is a good starting point to understand and learn about the options. Feel free to ask questions. There are a lot of very knowledgeable people here willing to help. Terry
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    Old 05-06-2022, 04:35 AM   #4
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    Re: New cancer diagnosis - how to decide

    The smart ones do what you are doing, which is to ask questions and gather info. Props for that.

    I’d get “The Key to Prostate Cancer: 30 Experts Explain 15 Stages of Prostate Cancer”
    Book by Mark Scholz. Very illuminating. Then you can google on “ nccn guidelines prostate cancer” and get a link to the latest recommended guidelines on cancer care. You have to sign up to get access.

    Those two things will give you plenty to read.

    I’m close to your diagnosis, mostly G6 with a wee bit of G7 as per a review by Epstein, but I had fewer positive cores than you. Currently doing AS.

     
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    Old 05-06-2022, 09:02 AM   #5
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    Re: New cancer diagnosis - how to decide

    Hi youngandslim and welcome to our Board! I'm so sorry you have been drafted into our group, but it is a fine group, and now you have all the rights, privileges, honors and awards for being a cancer survivor!

    Actually, you are specifically a "prostate cancer survivor", which is a great thing to be, as our long-term survival prospects are really good - the best of any major cancer. Fifteen-year survival is used as a long-term benchmark, and, taking all comers with prostate cancer - from the mildest to the rare cases that have already metastasized and spread widely at diagnosis - survival at the fifteen year point is in the mid-90 percents. (Those with wide-spread prostate cancer at diagnosis is the only group that does not do well, but even for them progress is being made every year; based on your biopsy, it is highly unlikely that you are in that group.)

    I heartily endorse the recommendations by CentralPaDude! The book is the best place to start as I see it. In addition to Dr. Scholz's expert chapters, you get chapters from 29 others, most of them also leading experts. The book is divided into five main categories that span the spectrum from mild to very serious prostate cancer, and each of those categories is divided into three sub-categories from lower to elevated risk; that gives you a very tailored approach to the disease.

    I personally favor modern radiation for most of us (not all), perhaps coupled with a limited course of what is known as androgen deprivation therapy. There has been enormous progress in that kind of therapy over the past two decades, building from a point where it was neither very effective nor desirable from a side effect standpoint. It is now highly effective and usually has a low burden from side effects long-term, once you get past the bothersome but tolerable side effects of treatment. I am now nine years past my radiation treatment, with outstanding cancer control and minor side effects. That said, surgery is also a worthy option.

    Good luck,

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - --
    22 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA, for some reason based on a less sensitive test on 7/20/2021 was <0.05, still apparently cured in my ninth year since radiation (PSA as of 12/2/2020 was <0.01). (T 93 as of 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. I have also had 225 undergraduate classroom hours just in statistics and experimental design, plus more in graduate school, which dwarfs what most doctors have, and that has made my “hard knocks” experience more meaningful. What I experienced is not a guarantee for all but shows what is possible.

     
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    Old 05-06-2022, 09:54 AM   #6
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    Re: New cancer diagnosis - how to decide

    I would get a second opinion from a pathologist at a cancer center of excellence and 3T MRI before deciding on treatment.

    Don’t be in a hurry making your decision.

     
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    Old 05-06-2022, 03:42 PM   #7
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    Re: New cancer diagnosis - how to decide

    Hi again and PS:

    Forgot to mention that you are less than two hours away from one of the leading centers for assessing and managing prostate cancer in the world: the Mayo Clinic in Rochester. I'm sure you know it is renowned for treating many diseases, but that most certainly includes prostate cancer.

    Dr. Eugene Kwon, MD, is an internationally acclaimed pioneer and expert in imaging prostate cancer, in immune therapy for prostate cancer, and generally in assessment and treatment of it. Another member of the team is Dr. R. Jeffrey Karnes, a very highly regarded surgeon for prostate cancer. That whole Mayo team has been very active in advancing assessment and treatment of the disease. Advances they have made are now benefiting patients in many centers throughout the US and world.

    I suspect you also have adequate expertise available in Minneapolis, especially if your case continues to look significant but not dangerous if treated properly, but if you need or want that world-class talent and experience, it is nearby. One strategy is to use local, capable physicians but get strategic analysis and advice from top experts. That's what I did.

    Again, good luck.

    Jim

     
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    Old 05-13-2022, 10:06 AM   #8
    youngandslim
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    Re: New cancer diagnosis - how to decide

    THANKS to everyone for the knowledge sharing and good advice. After reading the stories on these pages, it sounds like a great deal of survivors are very happy with their treatment and are doing well.

    The path I have taken so far has been enlightening as to the recent advances in treatments and different side effects to expect both short and long term. I read a lot on this forum and researched myself (internet). I also did reach out to prostate cancer survivors that I know regarding their satisfaction with their treatment choice, as well as several doctors for advice surrounding their treatment specialties: prostatectomy, radiation (EBRT: IMRT and SBRT), focal therapy, as well as AS. My doctors felt that I did not need a dual treatment scenario (radiation + ADT).

    Below is what I took away from my research and meetings in a general sense. I am not including a lot of detail because each case and person are different and you should do your own research to map out a plan for yourself given your diagnosis, your age, tolerance, etc. The resources are out there and this forum is a great place to help find those resources.

    Radical Prostatectomy - A great solution for some people but not for me since I have Intermediate "favorable" (Gleason 3+4) cancer. The short term (a few weeks) impact of bleeding, catheter, leakage, etc. was tolerable to be cancer free but the long term potential impacts (urinary issues, ED) were to great considering my diagnosis. If I had a more unfavorable diagnosis, I would surely consider this treatment.

    Radiation in general - I found that the recent advances in more targeted and high dose radiation are very significant. The side effects due to damage to healthy tissue are being reduced every day. Many people choosing radiation therapy have very few side effects, especially short term (1-5 yrs). I do have some reservations about radiation when considering long term side effects (10-15 yrs). The advice I received was that the long term side effects can include bowel and bladder issues, as well as ED. Still, a great treatment option. I did have a question around "What if I have a prostate cancer recurrence? - Could I receive additional radiation treatment, or salvage prostatectomy? My doctors told me that having radiation may make a salvage prostatectomy more complex due to the tissue effects of the original radiation treatment. Definitely a negative for radiation.

    Focal Therapy - I spoke with a specialist regarding Cryotherapy, HIFU and AS. I was intrigued by the minimal-invasiveness of the Cryotherapy and the preservation of functions with similar cancer ablation results to RP for low and intermediate risk prostate cancer. I was also intrigued by the non-invasiveness of HIFU with similar results and the fact that my diagnosis made me an ideal candidate for this treatment.

    At this point, I am leaning toward HIFU sometime in the next 6 months.

     
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    Old 05-14-2022, 09:27 AM   #9
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    Re: New cancer diagnosis - how to decide

    HIFU

    Hi again younand slim. You wrote:

    Quote:
    Originally Posted by youngandslim View Post
    .... I was also intrigued by the non-invasiveness of HIFU with similar results and the fact that my diagnosis made me an ideal candidate for this treatment.

    At this point, I am leaning toward HIFU sometime in the next 6 months.
    I hope to write more shortly but wanted to give you some information about HIFU.

    Years ago many of us, including me, were eager to see research results about HIFU as its relative non-invasiveness and catchy technology made it look attractive. It also had great public relations, with some advocates, HIFU developers, and enthusiastic physicians hyping results that made it look effective at the one and two year points after treatment. It caught on with several leading centers around the world - the US, Canada, UK, Japan and others among them - that were all conducting trials. The claim, the hope, was that it was just as effective as surgery but with a much better profile of side effects. (Radiation at the time had not yet emerged as the effective therapy it is today.)

    Trial results from many of these research centers matched the pioneering trials that showed great success through the two-year point. However, by the third year after treatment a disturbing proportion of patients experienced recurrences, and the trend continued downward until success levels were well below success for surgery at the four- and five- year points.

    One of the leading pioneers of HIFU, and other focal therapies for prostate cancer, was Dr. Mark Emberton of London, UK. However, more than a decade ago he abandoned whole-gland HIFU therapy, finding it both relatively ineffective and much more damaging than expected. He described his experience in detail in one of the annual conferences sponsored by the Prostate Cancer Research Institute, I believe in 2016, though I'm not certain that was the year. He still does HIFU as a focal therapy, which does not have the same likelihood of damaging the inside of the whole prostate.

    I'm adding this after reading Prostatefree's comment on focal therapy: Dr. Emberton requires that patients are well-suited for focal therapy, which included a careful mpMRI and other evidence that lowered the risk of multi-focal disease beyond the detected spots. Many patients consulting him for focal therapy are unable to get that therapy because there is too much risk of disease elsewhere in the prostate. I concur that focal therapy is still in the evolving phase with no conclusive evidence of its effectiveness for a high proportion of patients, as far as I am aware. The UK, Europe and some other countries have been in the lead in focal therapy, rather than the US.

    On the positive side, a team in Japan, after years of discouraging results, found that HIFU in the context of supportive technology achieved superior results against cancer compared to the older HIFU with just Ablatherm or Sonablate equipment. However, their five year results were published in 2021 and do not look that competitive with radiation or surgery to me; success looked good in the low risk group where patients really should be on active surveillance, but were in the mid- and lower 60 percents for the intermediate and high-risk groups that really need treatment. You can see the study at https://pubmed.ncbi.nlm.nih.gov/34375163/ (abstract) with a link to the whole paper. Added after the original post: These days, competitive rates of success at around the five year point should be about 80% or higher for intermediate and high-risk patients, and HIFU is far below that. However, it is clear that it has worked well for at least a small proportion of such patients. If it were me, I would want a therapy with a better track record.

    I hope this helps.

    Jim

    Last edited by IADT3since2000; 05-15-2022 at 01:12 PM. Reason: Added comments on focal HIFU and on HIFUs success relative to standard options.

     
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    Old 05-14-2022, 12:40 PM   #10
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    Re: New cancer diagnosis - how to decide

    Quote:
    Originally Posted by youngandslim View Post
    THANKS to everyone for the knowledge sharing and good advice. After reading the stories on these pages, it sounds like a great deal of survivors are very happy with their treatment and are doing well.

    The path I have taken so far has been enlightening as to the recent advances in treatments and different side effects to expect both short and long term. I read a lot on this forum and researched myself (internet). I also did reach out to prostate cancer survivors that I know regarding their satisfaction with their treatment choice, as well as several doctors for advice surrounding their treatment specialties: prostatectomy, radiation (EBRT: IMRT and SBRT), focal therapy, as well as AS. My doctors felt that I did not need a dual treatment scenario (radiation + ADT).

    Below is what I took away from my research and meetings in a general sense. I am not including a lot of detail because each case and person are different and you should do your own research to map out a plan for yourself given your diagnosis, your age, tolerance, etc. The resources are out there and this forum is a great place to help find those resources.

    Radical Prostatectomy - A great solution for some people but not for me since I have Intermediate "favorable" (Gleason 3+4) cancer. The short term (a few weeks) impact of bleeding, catheter, leakage, etc. was tolerable to be cancer free but the long term potential impacts (urinary issues, ED) were to great considering my diagnosis. If I had a more unfavorable diagnosis, I would surely consider this treatment.

    Radiation in general - I found that the recent advances in more targeted and high dose radiation are very significant. The side effects due to damage to healthy tissue are being reduced every day. Many people choosing radiation therapy have very few side effects, especially short term (1-5 yrs). I do have some reservations about radiation when considering long term side effects (10-15 yrs). The advice I received was that the long term side effects can include bowel and bladder issues, as well as ED. Still, a great treatment option. I did have a question around "What if I have a prostate cancer recurrence? - Could I receive additional radiation treatment, or salvage prostatectomy? My doctors told me that having radiation may make a salvage prostatectomy more complex due to the tissue effects of the original radiation treatment. Definitely a negative for radiation.

    Focal Therapy - I spoke with a specialist regarding Cryotherapy, HIFU and AS. I was intrigued by the minimal-invasiveness of the Cryotherapy and the preservation of functions with similar cancer ablation results to RP for low and intermediate risk prostate cancer. I was also intrigued by the non-invasiveness of HIFU with similar results and the fact that my diagnosis made me an ideal candidate for this treatment.

    At this point, I am leaning toward HIFU sometime in the next 6 months.
    “If you have radiation first, you can’t have surgery later” is, in my opinion, a misleading talking point used by urologists to steer men into surgery.

    It is true that it is difficult to remove a prostate after radiation. But, what they often don’t tell you is that there are several effective non-surgical salvage treatments available for radio-recurrent prostate cancer. Targeted radiation such as SBRT or protons, or cryotherapy, HIFU, or TULSA-PRO could be selected. If their advice did not mention these options, and left you with the impression that you were out of luck if primary radiation failed, then such advice was misleading by omission.

    https://prostatecancerinfolink.net/2017/09/05/salvage-focal-ablation-for-radio-recurrent-prostate-cancer/

     
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    Old 05-15-2022, 05:09 AM   #11
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    Re: New cancer diagnosis - how to decide

    A few statements from the recently updated PC guidelines. They have been recently posted and are near the top of the list. I recommend you print them, read them, and highlight with a marker what applies to you, including the supporting statements.

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

    13. 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)

    There are detail explanations with each guideline that includes a discussion of focal treatments.

    Prostate cancer is multifocal. The assumption you have only one foci of intermediate cancer developing is a high risk assumption, imo. Biopsies sample only a very small percentage of the gland. MRI's are an emerging technology for PC screening and are more fallible than biopsies.

    Prostate cancer is not a designer disease where smart shopping results in better deals. We have been studying prostate cancer and it's treatment successfully for decades with proven treatment paths developing better and more refined techniques and professional experience and expertise in the field in each of the proven paths.

    Focal treatment, regardless of the energy source, is recent and developing and may or may not eventually be considered a working and recommended path.

    If you have a good doctor, their opinion should weigh more heavily than your own for the obvious reason. Your automatic approach to your situation to come to your own conclusion suggests you may benefit from consulting a cancer center of excellence with strong PC experience. I'd expect their approach to be data driven, peer reviewed internally across the disciplines and within the guidelines.

    Guideline #12 is your category, rated Grade A and the percentage play.

    I, personally, do not consider your high volume of G3+4 (4 samples at 80%) at the base to be favorable- intermediate. Genetic testing of the G4 samples will help sort it out for you.

    A tell to your bias to minimize treatment is revealed in the limited info you shared. Complete a full signature if you want the benefit of the wisdom and experience on this forum.

    Don't get lost in the weeds.

     
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    Old 05-15-2022, 01:15 PM   #12
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    Re: New cancer diagnosis - how to decide

    I added a couple of comments to my original post of May 14 regarding focal HIFU and HIFU's competitiveness relative to radiation and surgery. The additions are in blue.

    Jim

     
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