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    Old 03-25-2019, 02:32 PM   #1
    dewayneb
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    Newly Diagnosed

    Hello all. Thanks ahead of time for reading and any insights you may provide.

    I am 49 years old. After having my PSA monitored for years because it was always high for my age, one negative biopsy, and a negative MRI my new urologist ordered a saturated biopsy after about 4 years from my negative biopsy.
    I got the results today, 2 of the 12 cores came back positive for cancer with a Gleason score of 6 (3+3) in both.

    My urologist recommends, for the time being, to keep active surveillance until something changes; my last PSA was 8.95. He did order another test, molecular test of some kind, to confirm that the risk of an aggressive cancer is very low.

    He did say that I could have a prostatectomy or radiotherapy if I choose, each would be a high success rate, but he is not sure that dealing with the side effects of those methods would outweigh holding off on any treatment and just doing the active surveillance.

    Needless to say, the thought of sitting on a cancer diagnoses and choosing not to treat it seems a little crazy to me, but I also see the point of the urologist to wait.

    Any thoughts, experiences, or anything else anyone can share would be greatly appreciated.

    Thanks!
    DeWayne

     
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    Old 03-25-2019, 08:23 PM   #2
    IADT3since2000
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    Re: Newly Diagnosed

    Hi DeWane and welcome to the Board!

    Twenty years ago “active surveillance” was not even a term anyone knew outside of some pioneering urology practices that were doing it in a clinical trial setting, some practices even using different terms like “expectant management” for the same idea. Most doctors treating prostate cancer would have considered the idea both nuts and dangerous. Then, starting in 2002 with the first report of encouraging results, results of different studies, with ever longer follow-up of patients from diagnosis, began to gradually accumulate from different major centers in the US and around the world. But fifteen or so years ago active surveillance would have still been considered really “out there” and potentially dangerous, risking “the escape of just one cell” that might go to a distant location in the body and start a life threatening metastasis.

    However, by ten years ago, a substantial number of studies at highly respected cancer centers was a testament to what looked like both an effective and safe strategy . That wasn’t enough for many busy urologists though; they were still wedded to the idea of “heal with steel,” not noticing the research in active surveillance (or the vast improvements in radiation). They kind of felt like you: "not treating seemed a little crazy.” Now, in 2019, various medical association guideline groups have recommended “active surveillance” as the go-to approach for appropriately low-risk prostate cancer. The highly consistent and large body of research shows that properly done surveillance for mild prostate cancer, which is quite well though not perfectly defined, often gives suitable patients freedom from major treatment and its side effects for the rest of their lives, while giving others, who have somewhat stealthy cancer that is more aggressive, a year, two years, or perhaps a bit more free of treatment while still detecting disease that needs treatment in time to allow treatment that is virtually as effective as immediate treatment after diagnosis and with about the same average burden of side effects! That added time also allows prostate management and treatment technology to continue its awesomely rapid pace of advance.

    Instead of worrying about one little cell escaping and metastasizing, it is now known that Gleason 6 prostate cancer – true Gleason 6 – virtually never metastasizes; it can grow locally, but it doesn’t metastasize by jumping to distant sites. “True Gleason 6” is different from Gleason 6 based on a biopsy that may not have sampled an area of the prostate that harbors higher-grade cancer, but active surveillance has proven an excellent way to smoke that out.

    My impression is that you are getting very good care. The doctor is not rushing you, in fact he is encouraging you to do active surveillance, which is in line with research and published guidelines for a cancer with the characteristics you describe. Molecular tests are part of the progress in recent years. I’m thinking, as a layman, that most patients with low-risk prostate cancer would not be offered such tests, but your urologist is probably thinking that your PSA is high enough that a bit of extra surveillance is warranted. My layman’s impression is that the BRCA-2 gene (the same one known widely for breast cancer) is the one the urologist is looking for, though there are others as well that are concerning. The BRCA-2 mutation suggests a riskier course even when the other indicators are good, and the flip side is that the absence of that mutation adds to confidence in active surveillance.


    This is getting really long, so I’ll just wish you peace of mind for now.

    Last edited by IADT3since2000; 03-25-2019 at 08:25 PM. Reason: Minor omission.

     
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    Old 03-26-2019, 08:58 AM   #3
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    Re: Newly Diagnosed

    Thanks so much for info, IADT3!

    This was great and usable information, and helps me understand what is going much better. The whole situation is a little bit to unpack, so having this information definitely helps.

    Thanks again!
    DeWayne

     
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    Old 01-04-2022, 08:36 AM   #4
    dewayneb
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    Re: Newly Diagnosed - UPDATE

    After a few years of AS, my urologist has finally recommended treatment.

    Three years ago my PSA was 8.95 but has continued to creep up 9.13, 10.64, and 11.75. After an MRI showing visible lesions which weren't present before, my urologist did another biopsy which revealed my cancer has progressed. A previous core sample that was GS 6 (3+3) is now GS 7 (3+4) and another previous core sample that was 10% cancerous with a GS 6 (3+3) has the same GS but is now 40% cancerous with perineurial invasion present. To complicate things, my Decipher score came back as Low Risk but with the increase in cancer in the prostate combined with my constantly rising PSA has my urologist concerned enough to longer recommend AS.

    After meeting with my urologist and a radiologist to discuss options both have recommended a prostatectomy since I am still relatively young, 52 years old, and keep radiation as a later option if it is needed.

    Obviously the side effects of a prostatectomy, incontinence and ED, at only 52 years old is a concern but my doc is confident after some time those side effects will decrease.

    Any thoughts and insight would be greatly appreciated.

    -DeWayne

    Last edited by dewayneb; 01-05-2022 at 06:37 AM.

     
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    Old 01-05-2022, 12:01 PM   #5
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    Re: Newly Diagnosed

    Early detection early treatment is the mantra for treatable cancers. Denial and delay are the two demons of cancer.

    In most serious cases, early detection was missing.

    Regarding the side effects, prostate cancer is a long and painful death.
    __________________
    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, upgraded to G3+4, Tumor 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 01-05-2022, 12:16 PM   #6
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    Re: Newly Diagnosed

    I would recommend that you investigate high dose rate brachytherapy, SBRT/Cyberknife, and proton beam therapy. Those are the three radiation types that have been reporting impressive non-recurrence results.

    I realize that you have spoken with a radiologist. But, if they do not offer any of the above protocols, then their opinion is not informed about them.

     
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    Old 01-06-2022, 06:05 PM   #7
    Terry G
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    Re: Newly Diagnosed

    Hi Dewayne, Sorry your AS is coming to an end. I believe the data suggests that for low and intermediate risk guys the cure rate as well as the long term side effect risks favor SBRT/Cyberknife over surgery. HDBT and Proton are also both excellent options. One exception for radiation would be those guys suffering significant urinary issues from BPH along with PCa.

    Surgery does have the advantage of getting a pathology report; but, a 50% chance of either reduced urinary or sexual function or both is a high price to pay.
    __________________
    Rising PSA:
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    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
    DOB 7/21/47; good health; age 69 @ Dx
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    PSA’s post.SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3, 0.6, 0.8, 0.4

     
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    Old 01-07-2022, 09:00 AM   #8
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    Re: Newly Diagnosed

    I chose surgery to keep radiation in my quiver as a follow up. I'm not as young as you, but have long lived genetics in my family. I believe the combination of surgery and radiation (if necessary) has the highest success rate. I saw my approach as climbing the ladder of treatment options and I wanted a longer game. ADT is now a big addition to our arsenal and is used in many ways throught out the treatment process.

    My surgery has been successful, so far at 5 years out. I am very glad to be recovered and free of my prostate. It was not playing nice. I also believe prostate cancer is becoming more aggressive in our population. Most treatment for treatable cancers begin with surgery if possible. Breast cancer is similar, but much easier to access surgically than the prostate. A Davinci style RP is very challenging and has a long learning curve. Make sure your surgeon has at least 800 procedures in expereince, if not more. A small survey was done indicating over 3,000 approaches expert.

    Incontinence has been only a minor inconvenience. It was already developing before the RP from my enlarging prostate. I recovered my continence within 3 months having only to use a lite pad. Occasionally now, I will dribble from a physical exertion, sneeze, or constipation. Hard stool continually pressing against the bladder contributes to it. Keep your stool soft and your bowels empty. I now use a daily fiber supplement regime which has also improved my general overall health and well being. Avoid caffeine and alcohol while recovering. They irritate the bladder along with carbonation.

    Erections slowly returned at about a year an improved for another year to full recovery. Nerve damage can heal if it hasn't been severed or severe, but slowly. Nerve tissue heals at a much slower rate than other soft tissue. Most common nerve damage is caused by the heat in the surgical cavity generated by the cauterizing tool used.

    Here's the risks unique with surgery; bad surgeon; once at the site the surgeon will follow the cancer and remove it inculding the critical nerves for erections and it is hard to predict this. Be wary of any professional who predicts the cancer is contained in the gland.

    A big surgery benefit is the post pathological examination of the gland. You gain an much more accurate and complete grading and locations of the cancer. This will help in planning any follow up treatment you may require.

    I have a younger brother who chose surgery and it failed as a "cure". He had a small volume of cancer, but a G3+4 lession on the perimeter (called a margin which is an adverse condition) left some G4 behind. His first post PSA test was 0.03 and the next was 0.04. Follow up radiation plus ADT seems to have cleaned it up. There are some lingering side effects of the radiation to his colon. The lesion was adjacent to his colon. Of all 3 treament modes he struggled the most with the side effects of radiation and ADT and eventually discontinued the ADT (illadvised, imo) before completing the regimen.

    If you choose surgery insist on using an ultra-sensitive PSA test post surgery, i.e <0.02 and some test are even more sensitive <0.003. There are good reasons for this we can discuss when the time comes.

    The risk in radiation is longer term and may impact a younger man. Cancer cells have damaged DNA and are suceptible to radiation and ADT. Healthy prostate cells have more DNA redundancy and survive the radiation, but not entirely. They pay a price in their DNA redundancy and over time may not live as long causing scarring and hardening. If you are older it's not so much a concern. Radiaton has become much more accurate, but it is not accurate at the cellular scale. It is more like choking down a shotgun. It can not differentiate between a healthy cell or a cancerous one.

    Studies have shown the younger the man the faster and more complete the recovery, in general, including the side effects.

    Early detection, early treament.
    __________________
    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, upgraded to G3+4, Tumor 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 01-07-2022, 11:20 AM   #9
    IADT3since2000
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    Re: Newly Diagnosed - UPDATE

    Hi again dewayneb,

    I'm sorry you are now needing treatment. How have you done over that time? At least you have had about three years free of side effects and can now benefit from a lot of progress over those past three years, especially in imaging.

    I too feel that both radiation and surgery would likely do a good job against the cancer, and that leaves the choice mainly up to likely side effects and personal preference. That said, I'm not fond of the concept of using radiation as a follow-up, thinking that the combo of surgery plus radiation must have a greater impact; the reality is that a patient who has a recurrence shortly after surgery is going to have to wait to have radiation until he has healed from surgery, which takes at least a year, and that necessarily delays radiation. During that time, the cancer can spread. Of course, if the initial surgery works, then the patient wins the dice roll. But since modern radiation is at least as good as surgery at curing prostate cancer for most patients, it gets back to the side effect issue.

    External beam radiation in the form of IMRT (Intensity Modulated Radiation Therapy) guided by advanced imaging is another good option. My understanding is that cancer cells are fatally damaged by radiation from IMRT or other approaches while healthy cells take only temporary damage from which they fully recover; that means virtually no long term impact on healthy cells, which has been well documented by a number of long term studies. Official guidelines, such as from the National Comprehensive Cancer Network, show that age is not at all a consideration for getting radiation; it is fine for younger patients.

    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 01-07-2022, 12:09 PM   #10
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    Re: Newly Diagnosed

    I told my story because I had a successful experience with surgery that I didn't consider a roll of the dice considering their success rates are similar. Others may disagree. This leads to the most dangerous part of these conversation, confirmation bias.

    Everyone of us will have confirmation bias towards our chosen treatment. It is human nature. It includes doctors, i.e surgeons like surgery and radiologists like radiation, etc. When benefits of one over another is clear you will find them agreeing. In the grey areas between, the debate gets more intense. Your very young age is a critical caveat setting you apart from most of us.

    Radiation damages healthy cell DNA. No dispute, imo. The question is does it do so to a measurable extent and effect the quality of your life, over time. Radiation walks this fine line.

    Men who have chosen radiation seldom come back to complain about delayed side effects occurring out past 5 or 10 years. They chose this path understanding there will be none. I have had multiple surgical procedures and I will say they all had side effects of some degree or another. Some easier to live with than others.

    I am not certain there are any studies out there at 10 years for some of the newer radiation methods. I believe there are now 5 year studies.

    My preference in these situations is to advise a cancer center of excellence with a strong practise in prostate cancer. My understanding is there is more of a team approach across disciplines, and more current practices related to multi-discipline treatment choices.

    I find it hard to argue against two doctors of different disciplines agreeing to a specific treatment path. Keep doing what you are doing.

    I find your consistently high and steadily rising PSA numbers an important fact. PSA, imo, is the single most effective and useful tool we have and in my case it tracked directly with the progression of my disease.

    I also don't know the size of your prostate or the number of samples your doctor consider's saturation. I've heard of 20 to 30 sometimes depending on the risk and the size of the prostate.

    I agree with ASAdvocate on high dose brachtherapy. It is an impressive radiation technology and highly controllable.

    Another comment, location of the lessions is also important. Those at the base have a greater risk of escaping than those at the apex. The base is what we would call the top closes to our bladder.

    Also, the age of the cancer is important, i.e how long has it been in the oven. Prostate cancer cells are always floating off into the rest of the body, whether they take hold somewhere is what separates less and more aggressive cancer types. I could be wrong about this, but imo, cancer that starts early is a more aggressive cancer in it's own way. Whatever you choose to do, I wouldn't spend anymore time watching it.

    I have three brothers. All chose surgery. One had follow up radiation. One has ongoing incontinence, he was the oldest at the time of his surgery at 71. He is also the least fit, suffers from depression and I suspect has done little to nothing to deal with the incontinence, i.e kegel exercises and diet.

    There is a rule of thumb, 80% of all men will have some form of prostate cancer by the time they are 80. The average male life span at birth in this country is around 75. This is why some, even doctors, dismiss it as a serious death risk in men. In our age group, cancer is the leading cause of death and prostate cancer is the second leading cause of cancer death in American men.

     
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    Old 01-10-2022, 05:04 PM   #11
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    Re: Newly Diagnosed

    Hi Prostatefree. I have some thoughts to offer in response to your post below.

    You wrote:
    Quote:
    Originally Posted by Prostatefree View Post
    T...Your very young age is a critical caveat setting you apart from most of us.
    Expert surgeons USED TO BELIEVE that about radiation, specifically that it was not a wise choice for younger men, which appears to be your point. Indeed, decades ago that was true - radiation was a fallback approach if surgery was not a good solution; radiation oncologists usually agreed with the surgeons back then. Informed patients, including me back in 2000 - two decades ago, also were aware of the limitations of radiation. That's why I chose not to follow through with radiation, even though I had been rejected for surgery and thus had no likely curative options at the time.

    However, with great progress in radiation delivery as well as progress in associated technologies, radiation is now clearly safe for prostate cancer patients of ANY age! That assessment is reflected in official recommendations published by respected guideline groups: no age restriction for radiation! As with active surveillance, what led to the change in the accepted medical guidelines was publication of convincing research. That research is available for us to view via a US government website, www.pubmed.gov. If anyone needs help accessing it, or tips on how to search for relevant research, please ask here. The role of age (especially life expectancy) on treatment choices is the main subject of a recent thread. Part of the "why" that research is credible has to do with the adequacy of follow-up in medical research studies of modern radiation. That is such an important topic that I am making it a new thread.

    (By the way, it can help to consider the gradual acceptance, based on solid evidence of active surveillance, as a mirror for how we think about progress in radiation technology as specifically related to age. AS is now completely accepted for appropriate patients, but for many years most surgeons said the same thing as they then said for radiation: only appropriate for older men. Indeed, many surgeons were not considering AS unless a man was 65 or older. And before that, most surgeons did not accept active surveillance at all, thinking it was crazy. Now, AS is not only widely accepted but is THE ONLY RECOMMENDED THERAPY per widely used guidellines for some patients and THE PREFERRED therapy for other patients, and young age is no longer considered in making the decision, per guidelines.)

    ….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 01-11-2022, 02:06 AM   #12
    Prostatefree
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    Re: Newly Diagnosed

    Imo, AS is acceptable today because G6 alone is now considered "benign" and some PC can now be genetically identified as low risk. Our view of what constitutes cancer needing treatment has narrowed.

    I chose surgery because I wanted a treatment path that gave me more treatment options than ADT and chemo out past 20 years. ADT may or may not provide it. And chemo does not, imo.

    If accessible, surgery is still the first option in cancer treatment. PC surgery has gone from a procedure performed blind by hand to a robotic procedure done under light and magnification.

    My primary message for treatable cancers is early detection, early treatment. This is by far the most important message I have to share.
    Treatment possibilities is an ever improving landscape. I am not prepared to dismiss surgery as a current acceptable treatment option. Five years later I couldn't be more satisfied. Your view is I was lucky. My view is I diligently practice healthcare with annual physicals and a competent doctor and healthcare system heeding their recommendations while educating myself. Fortunate to have access to it? Yes. While good to be one of the lucky ones, I chose instead to accept responsiblity for it.

    But most importantly, both the OP's surgeon and radiologist recommend surgery. I not going to second guess those most qualified on the ground to make the call.

     
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    Old 01-12-2022, 09:46 AM   #13
    IADT3since2000
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    Re: Newly Diagnosed

    Hi Prostatefree. Here are some more thoughts on what you wrote in post #10 about how radiation affects healthy cells.

    [QUOTE=Prostatefree;5514603]Radiation damages healthy cell DNA. No dispute, imo. The question is does it do so to a measurable extent and effect the quality of your life, over time.

    Indeed, it is well known and widely accepted that radiation does damage healthy cell DNA, but for our decision making that is usually irrelevant. It is usually irrelevant because it is also well known and widely accepted that healthy cells fully and rapidly recover from safe doses of radiation, and this means there is no impact on quality of life over time for tissue that received safe doses.

    On the other hand, in line with your point, it is also recognized that some patients will need dosing high enough to kill the cancer in certain areas that will also injure some healthy tissue enough so that they cannot fully recover; this may indeed result in some side effects. One of the best-known side effects is development of scar tissue, and that can be a gradual process, as you noted. Usually, per my layman's impression, most late developing side effects will have shown up by the five-year point, though they can appear later. For us patients, the key questions are: what are the odds generally and specifically for us personally of developing side effects, especially those that are bothersome?

    Fortunately, many studies have been published that show the odds of mild side effects are low, and the risks of more bothersome side effects are very low. Many radiation patients, even those who had pelvic doses, have experienced no long-term side effects despite very long-term survival after radiation. That's a good indicator that radiated healthy tissue is able to recover and function well long term. I myself am now approaching the nine-year benchmark since completing radiation that included a pelvic dose as well as a higher dose to the prostate, and I have no long-term bothersome side effects from it. Doctors can and should advise patients of the general risks of side effects based on the odds, and especially when the odds of substantial side effects are higher, due to the patient's special circumstances.

    Jim

     
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