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    Old 11-19-2020, 09:29 AM   #16
    IADT3since2000
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    Re: Before I have that RP done, what do you think?

    Hi again Andy,

    You’re welcome! I always feel more at ease when someone on the Board is using “The key” to get oriented. It’s such a great asset for us.

    I’ll add a comments on your latest post.


    You wrote:
    Quote:
    Originally Posted by Thudson View Post
    I picked up "The key to Prostate Cancer." (thanks Jim) and have been busy reading. … I was surprised that the outcomes were better for some of the combo treatments than the outcomes for RP. They seem to like the radioactive seeds quite a bit but I don't see much about that anymore….
    For patients who definitely need some kind of treatment, even solo modern radiation with supportive imaging, plus a course of supportive ADT (length depending on risk level), typically outperforms RP outcomes AND comes with better odds of a substantially lower burden of side effects both short and long term. (That said, surgery works very well for some of us.)

    Regarding seeds, it is very effective treatment when done well, solo or in combo, for appropriate patients, as demonstrated in multiple research studies. The issue is whether the doctor doing the seeds is adequately competent. This was a big issue years ago. Some doctors were referred to by rueful patients as “weekend wonders” who learned the technique from just a few days of training; I’ve seen slides, for instance, of imaging of seed placement where doctors completely missed the prostate, implanting the rectum instead. In fact experts state that there is a shortage of doctors who are expert in brachytherapy. Dr. Mack Roach, MD, a highly respected radiation oncologist/researcher specializing in prostate cancer was asked about this by moderator Mark Moyad, MD, this September’s Conference on Prostate Cancer sponsored by the Prostate Cancer Research Institute. Here are my notes of this Q&A.

    ~”Mark Moyad Q: Why are so few people doing permanent seed implants?
    Mack Roach A: It’s about the money, reimbursement. Also technical skill. If you don’t have good reimbursement, you have fewer residents trained. HDR has become more popular. In my own practice I routinely did brachy: permanent for low-risk, permanent plus little ADT, high risk … I have shifted to SBRT. SBRT at UCSF was designed to simulate HDR BRACHY in dose distributions. We have a proven track record for HDR, and just changed to SBRT. Part of it is just convenience for me. The tradiational is EBRT for 5 weeks followed by implant. I now flipped it, do implant first followed by the 5 weeks of EBRT. I think the SBRT up front may be more biologically effective. I call it the reverse boost – the seeds first followed by EBRT. It may be an immune deal, where the seeds stimulate the immune system.~” Elsewhere he said that reimbursement patterns are improving, which in time will improve access to well-done brachytherapy.

    My notes should capture the gist of the Q&A, but you can find the exact exchange yourself by going to the free video via www.pcri.org, moving the curosr to the Conferences button at the top of the page and dropping down to “2020 Annual Conference”, then clicking on Day 2 of the conference, and moving the time ball on the timeline to about 3:36 for Moyad’s question; however, on different days viewing the video, for a reason I do not understand, I find the same remark at times that are many minutes apart, so you may have to search for it. Weird! (Any explanation?)

    You also wrote the following: :
    Quote:
    Originally Posted by Thudson View Post
    I think the message they are trying to get across in "The key..." is that high PSA is not definitively indicative of cancer, but if you have cancer, your PSA will reflect it. In other words, if your PSA is low you won't have high grade cancer.
    That is true, except when it isn’t. For most of us, and extremely likely for you, it is true. The exception is a really aggressive but rare sub-type of prostate cancer known as “small cell” or “neuroendocrine” prostate cancer; it puts out little if any PSA, but is dangerous, and usually does not respond well or at all to androgen deprivation therapy (ADT). Basically, it does not depend on the usual sources of fuel, such as testosterone and DHT, to grow and thrive, so depriving it of those fuels does not work for such cancers. You can find a brief comment about that type in “The Key” on pages 326 and 327. There are other tactics that can help such patients, at least to an extent.

    I could not find information about Dr. Dolezal that would give clues about her expertise with prostate cancer pathology, other than that the lack of indicated special interests related to prostate cancer and lack of affiliation with a major center raise my concern a bit. If I were you, I would call her office so you can better judge whether she is more of a general pathologist or has a focus on prostate cancer. Her staff might know that.

    Good luck!

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    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 remarkably low and stable at <0.01; apparently cured (Current PSA as of 9/4/2020). (Current T 128 9/4/20.) 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.

     
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    Old 11-19-2020, 03:01 PM   #17
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    Re: Before I have that RP done, what do you think?

    And there is a persistent subset of men who will have a low psa and aggressive cancer.
    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months
    7-9-21 PSA less than 0.02; zero club 5yrs

     
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    Old 11-19-2020, 05:29 PM   #18
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    Re: Before I have that RP done, what do you think?

    I had PSA 3.1 with a Gleason of 3+4, but the location of the cancer (capsule, neurovascular bundle) caused me to go for treatment.

     
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    Old 11-19-2020, 07:28 PM   #19
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    Re: Before I have that RP done, what do you think?

    The size of your prostate is a deciding factor, in my mind, for having the RP. At your younger age, it is already more than double normal size. When I had a DRE around the age of 52, my prostate was normal sized & unremarkable.

    But within a handful of years, BPH began to develop to the point where I could only fine spray like a garden hose nozzle. One "leak" was done in increments of several events standing over the toilet, had to go multiple times overnight.

    By the time I was DXd with PC at age 61, my prostate was almost 100 gms in size -- that is FOUR TIMES normal size.

    I met with a radiation oncologist at Mayo Clinic (Rochester, MN) and he concurred with the Mayo surgeon that my particular PC case (also exclusively 3+3 with 3 positive cores) could easily be cured with either radiation or surgery.

    However, the RO agreed with my leaning toward surgery because, as he said, "I can cure your prostate cancer, but can do nothing with the BPH." He recommended that I have the da Vinci RP with Dr Matthew Tollefson, who had proposed the surgery to me.

    He did a cystocopy the day prior to surgery to examine the bladder, etc. Told me I have "a whopper of a prostate." He went on to say that prostates of my size tend to twist and turn as it continually tries to expand, which sometimes means encroachment into the urethra, etc.

    He assured me that my particular case made surgery the only true option -- and that he fully expected to cure me with the surgery.

    The morning after surgery, he came in and told me I should consider myself to now be cured.

    The surgery was Nov 1, 2011. Earlier this week, in 2020, I received my 9th consecutive annual PSA test of ZERO. And I am forever grateful to Dr Tollefson & would recommend him to anyone needing surgery.

    One of the real benefits of the surgery -- along with having no cancer -- is that I pee like a racehorse and often go the whole night without having to get up even once -- and that's after consuming a couple bottles of Coke the evening before.

    Having a Gleason 3+3 -- which was confirmed in my post-op pathology -- means there was ZERO chance of it ever spreading, even though I had one small positive margin. Gleason 6 PC cells cannot survive outside of the prostate and simply die if they ever escape.

    In your situation, I would recommend having the surgery before the prostate might approach the size that I experienced.

    Good lucK!
    Chuck

    Last edited by HighlanderCFH; 11-19-2020 at 07:31 PM.

     
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    Old 12-08-2020, 08:01 PM   #20
    OneWolf
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    Re: Before I have that RP done, what do you think?

    Gleason 6 doesn't metastasize and has never killed anyone. Gleason 7+ does both obviously.

    OP you have a tough decision ahead of you. I have no guidance or suggestions to offer but will share my story.

    No symptoms.

    At 50, had my first PSA as part of a regular physical, it was 4.5. Three more PSAs over 6 months, all 4.5-5.0 except one outlier 10.0. Biopsy reveals 6 out of 12 positive with average 30% involvement - all were 3+3=6. Doc says "RP!" Second opinion agrees "RP for sure!" Third opinion was the head of urology/oncology at UNC-CH. He says "at this point it's been 6 months, I would take it again in 6 months and we'll see if it's still the same versus going up." So I did.

    6 months later (51 years old now), PSA was 4.5. He says "maybe let's do another biopsy in 6 months" which we did. Second biopsy was almost identical to the first - 6 positive out of 12, all Gleason 6.

    I actively survey another year - PSAs quarterly. 5.0 average. After another year, my third annual biopsy: same results which is statistically rather amazing really - 7 positive out of 12, all Gleason 6. Doc says "looks the same as the first two." I said "great, see you next year" and he says "just keep doing 6 month PSAs and if it doesn't go up maybe another biopsy in 2 years."

    Now I'm 54 and my PSA is 4.0. Doc says quit bothering him unless my PSA starts doubling. He says "you have a lot of Gleason 6 disease. Gleason 6 doesn't kill people and it doesn't metastasize. When you are initially diagnosed, the primary risk that impacts success rates is that you have Gleason 7+ that was missed in the biopsy. What we have for you now is 3 years of data showing that (A) your PSA isn't changing and (B) 36 samples of your prostate show no Gleason 7.

    He further says that the Toronto and Johns Hopkins AS studies as well as other pathology studies are revealing that gleason 6 is very likely a different disease from gleason 7+. He mentions that his pathologist shared results of an investigation of a 94 year old man who left his body to science recently and his prostate was 100% gleason 6 cancer. Doc says he almost certainly had it for 40+ years. Died of heart disease.

    He said if he were me he would continue to take PSA every 6 months and at this point he doesn't want me to check in with him unless it doubles in a year. He further said "and I wouldn't expect it - your chances of gleason 7+ is only marginally worse than someone with no gleason 6. And even if it does progress at this point your survival liklihood is 99%+ assuming we treat at that time.

    Opinions of AS are changing - what I'm hearing now from him and others is already much more aggressive than when i was initially diagnosed 4 years ago.

    Incidentally, my latest PSA was 2.5 - a pleasant surprise here in an otherwise nightmare year 2020. I did go strict vegetarian 4 years ago when diagnosed, no idea if that is making any difference. 2.5 is probably an outlier. I don't care. I have a prostate and enjoy my erections.

    Good luck.

     
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    Old 12-09-2020, 04:14 AM   #21
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    Re: Before I have that RP done, what do you think?

    OneWolf, Good story. Most men with your age and pathology would have given in and had treatment after two opinions. Now, with three biopsies, you can feel more confident about your choice.

    But, I did not see that you are having MRIs. They are a standard part of a formal AS program, and often find suspicious areas that a biopsy can target. Has your specialist discussed imaging with you?

     
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    Old 12-09-2020, 09:46 AM   #22
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    Re: Before I have that RP done, what do you think?

    Yes I have discussed and would love to have a fusion biopsy but I cannot have MRIs unfortunately because I have some metal clips in my head near my eye socket left over from surgery following an incident 30 years ago when I was in college. I like to tell my dental hygienists (the clips are visible in my panoramic x-rays) that aliens put them there when I was abducted. The reactions are priceless.

     
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    Old 12-09-2020, 11:35 AM   #23
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    Re: Before I have that RP done, what do you think?

    You might want to research the ExactVU micro-ultrasound device. Instead of an MRI followed by a targeted biopsy, my next required biopsy at Johns Hopkins will be using the micro-ultrasound real time imaging.
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    Seven biopsies from 2009 to 2021. Three were were positive with 5% Gleason(3+3) found.

     
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    Old 12-09-2020, 12:40 PM   #24
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    Re: Before I have that RP done, what do you think?

    Quote:
    Originally Posted by ASAdvocate View Post
    OneWolf, Good story. Most men with your age and pathology would have given in and had treatment after two opinions.
    This is a very sad truth. Many ripped out prostates unnecessarily out there and many unpleasant side effects and complications all in the name of further reducing about a 0.1% mortality rate on a proper AS program. I attribute this to (A) private practice not staying current on research and (B) private doctors have car payments to make and davinci machines to pay off.

    Here is a good article. I have asked my doc several times if Gleason 6 Cancer should really be called Cancer. His last answer was finally the most accurate - with a sad shrug he said "do you think a bunch of surgeons whose living is paid for with their handiwork are going to vote to stop calling something cancer?"

    https://www.verywellhealth.com/is-gleason-6-prostate-cancer-really-cancer-4118536

     
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    Old 12-09-2020, 07:22 PM   #25
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    Re: Before I have that RP done, what do you think?

    Glad to hear its working out for you, OW.

    When I was diagnosed in January 2014, I was given a hard sell to get prostatectomy. 20% of one core was Gleason 3+3.

    Its been 6 1/2 years, and I'm 64 now, and I've avoided treatment to date

     
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    Old 12-09-2020, 07:51 PM   #26
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    Re: Before I have that RP done, what do you think?

    Good for you, that is awesome. Have you had any more biopsies since 2014? Any change? And how is your PSA level?

    I got the hard sell also, including by the current version of this forum at the time. It is sad really. I spoke to everyone that would talk to me about their experiences including all my dad's friends of course - in their 70's, half of them have dealt with it. They were all the same: Get it out!! I asked some of them what their numbers were and they literally said "I don't know - but it was cancer, so I had to."

    I think people make emotional decisions too quickly when they hear the word cancer. I almost did. It took me 6 months to get my wits about me. Now years later, most days I don't even remember I have it. I may still need to get my prostate out one day and that's fine. But so far, so good.

     
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    Old 12-10-2020, 07:50 AM   #27
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    Re: Before I have that RP done, what do you think?

    Quote:
    Originally Posted by OneWolf View Post
    Good for you, that is awesome. Have you had any more biopsies since 2014? Any change? And how is your PSA level?

    I got the hard sell also, including by the current version of this forum at the time. It is sad really. I spoke to everyone that would talk to me about their experiences including all my dad's friends of course - in their 70's, half of them have dealt with it. They were all the same: Get it out!! I asked some of them what their numbers were and they literally said "I don't know - but it was cancer, so I had to."

    I think people make emotional decisions too quickly when they hear the word cancer. I almost did. It took me 6 months to get my wits about me. Now years later, most days I don't even remember I have it. I may still need to get my prostate out one day and that's fine. But so far, so good.

    I've had 3 subsequent biopsies, the last one in October this year.

    My PSA was 4.2 when diagnosed, now its 1.9 but I've been taking Proscar for 3 years and that suppresses PSA scores by 50%. So its basically level.

    A live-event support group motivated me to get a 2nd opinion and the likelihood of AS. Before I told my story to the other fellows, I thought that surgery was inevitable.

     
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