CommunitiesJust Diagnosed With Prostate CancerHow do I post in this cancer support community?

How do I post in this cancer support community?

DS

Community Member

3 days ago

KEY CONSIDERATIONS FOR THE NEWLY DIAGNOSED (THIS POST COMPOSED 3/07/26, POSTED 3/09-10/26) NOTE: I wasn’t just diagnosed. I was diagnosed nearly two years ago. But what I’ve learned, and what I have to offer, would be only of use to those just diagnosed. ------------------------------- OVERVIEW: In the four months after receiving my prostate cancer (PCa) diagnosis, I had appointments with eight physicians specializing in various aspects of PCa treatment. Other doctors and medical professionals joined parts of these meetings to state certain aspects of treatment. Of all these doctors and medical professionals, not one ever mentioned any of the treatment considerations in the list I’ve assembled below. If I had been aware of even a few of these matters before treatment, I’d have chosen to have no treatment of my PCa. I offer these considerations so you, the newly diagnosed, can make the most broadly informed decisions about your treatment—or non-treatment. All of these considerations are quoted from articles in online peer-reviewed medical journals and medical news publications that report on clinical research and trials. The list is selective: Its focus is my disease state and progression, mounting side effects, absence of treatment recovery, and the direction of my research over the two years March 2024 to 2026. ------------------------- ME, MY PCa, TREATMENT, NONRECOVERY: My name is Dave Stauffer, Denver CO, desrlmt@gmail.com, 77 yo in March 2026. PCa diagnosed 8/16/23: stage T1c, PSA 6.7, Gleason 4+4=8, size 0.83mm, in one core, no metastasis. Treatment: ADT double-dose on 1/31/24 and 3rd (final) dose on 3/03/24. Radiation x42 sessions from 4/18 through 6/13/24. Nonrecovery: No testosterone recovery 20 months after treatment ended; testosterone replacement therapy begun 2/18/26. ————————————- LIST OF TREATMENT CONSIDERATIONS FOR THE NEWLY DIAGNOSED N Engl J Med 2023;388:1547-1558, 11-03-23 — Active monitoring of prostate cancer has the same high survival rates after 15 years as radiotherapy or surgery. … The negative impacts of radiotherapy and surgery on urinary and sexual function persist … for up to 12 years. … a small group of men with aggressive disease are unable to benefit from any of the current treatments, however early these are given. J Clin Med, Jan23 — More than 80% of patients present with localized disease, of these, 15% [12% of all] are at high risk for biochemical recurrence, estimated to be 70% in 5 years. … this group also has … mortality related to prostate cancer with ~85% dying within 10 years. … Most are offered radiotherapy with hormonal therapy, an inadequate … approach associated with significant adverse effects. Medscape, 11/2023 — … Radiation therapy [has] higher risk of persistent fecal urgency and incontinence of gas, secondary malignancy, and hemorrhagic cystitis. A systematic review of … radiation therapy … was associated with increased odds for a second malignancy of the bladder, colon, and rectum. … In a study by Pisansky et al of 1489 intermediate-risk PCa patients, disease-specific survival was not significantly different whether total androgen suppression (TAS) was given for 8 weeks or for 28 weeks prior to radiation therapy. Pisansky and colleagues found that the 10-year disease-specific survival rate in the study was 95% in the 8-week treatment group and 96% in the 28-week treatment group. Medscape: Neoadjuvant Androgen Deprivation Therapy in PCa, 10/2022 — … despite considerable advances in PCa research, high-risk, localized PCa remains an extremely refractory disease. (“In medicine, "refractory" describes a disease, condition, or symptom that is resistant to treatment, cure, or standard therapies.”) World J Mens Health. 2023 Jan;41(1):129-141 — … most recoveries to the castrate level happen in the first 2 years, with a minimal increase in recovery at 3 years, and almost no recovery after 36 months. Moreover … more than 25% remain castrated … and nearly 80% do not reach normal testosterone levels after this time. SMSNA, 5/2019: After ADT, Testosterone Levels Don’t Always Recover — But even two years after ADT ends, patients may still struggle with low testosterone, according a recent report. … Low testosterone is linked to lower bone density, leaving men at higher risk for osteoporosis. Men with low testosterone are also more likely to develop diabetes and heart disease. There are sexual side effects as well, including diminished libido, orgasm difficulties, and erectile dysfunction. … Twenty-four months after ADT finished, 8% of the men were still at castrate level. Memorial Sloan Kettering: Testosterone recovery uncertain after a_d_t_ for PCa, 10/08/2019 — … Approximately one-quarter of these patients failed to normalize their total testosterone (TT) levels (above 300 ng/dL), and one-tenth remained at castrate levels two years after ADT cessation. The odds of remaining castrate after two years were almost four times higher for patients who received ADT for more than six months. Zero PCa: Hormone therapy for PCa, 2023 — However, some cancer cells grow independently of testosterone and remain unaffected by treatment. … For this reason, hormone therapy can't stop cancer. JAMA, 1997 Feb 12;277(6):467-71: Fifteen-year survival in prostate cancer. A prospective … — Patients with localized prostate cancer have a favorable outlook following watchful waiting, and the number of deaths potentially avoidable by radical initial treatment is limited. Without reliable prognostic indicators, an aggressive approach to all patients with early disease would entail substantial overtreatment. Latest findings from the ProtecT trial are presented at the European Association of Urology (EAU) Congress in Milan and published in the New England Journal of Medicine — Although men on active monitoring, … were more likely to see it progress or spread than those receiving radiotherapy or surgery, this didn’t reduce their likelihood of survival. The trial also found that the negative impacts of radiotherapy and surgery on urinary and sexual function persist much longer than previously thought, for up to 12 years. … Around a quarter of the men on active monitoring had still not had any invasive treatment for their cancer after 15 years. Prostate Cancer Prognosis — 5-year relative survival rate of nearly 100 percent: Five years after diagnosis, the average prostate cancer patient is about as likely as a man without prostate cancer to still be living. 10-year relative survival rate of 98 percent: Ten years after diagnosis, the average prostate cancer patient is just 2 percent less likely to survive than a man without prostate cancer. 15-year relative survival rate of 95 percent: Fifteen years after diagnosis, the average prostate cancer patient is 5 percent less likely to survive than a man without prostate cancer. Prostate Cancer Survival Rates: What They Mean, 8/20/2024 — But only 1 in 36 people who have prostate cancer die from it. That's because most prostate cancers are diagnosed in older people in whom the disease is more likely to be slow-growing and non-aggressive. Most of them eventually pass away from heart disease, stroke, or other causes -- not their prostate cancer. J Clin Oncology, Vol 42, No 4_supp 2024: What is a Gleason Score? Grading System for Prostate Cancer — Studies have shown that Gleason scores from biopsies match those from removed prostates only about 45% of the time. This discrepancy means that many men may be undergoing unnecessary surgeries based on inaccurate initial assessments. … Gleason grading and scoring are largely subjective, and not all pathologists may agree on a Gleason grade. Rev Urol. 2005; 7(Suppl 5): S37–S43, reported by Ntl Library of Medicine: Adverse Events Associated with Hormonal Therapy for Prostate Cancer — Impaired memory, concentration, verbal skills, and other cognitive dysfunctions in patients receiving hormonal deprivation regimens have been documented. Hormonal deprivation also has emotional effects, including moodiness and short temper, crying with minimal provocation, and feeling depressed and anxious. JAMA Netw Open. 2023 Sep — In this large population-based cohort study of 16311 male patients undergoing radical prostatectomy or radiotherapy, biochemical recurrence after primary treatment was found to be a common event with a limited association with cancer-related mortality. J Clin Med. 2023 Jan; 12(2): 455: What Is New in the Management of High-Risk Localized PCa? — More than 80% of PCa patients in the developed world usually present with localized disease and, of these, 15% are recognized as being at high risk for cancer recurrence. … This group of patients has a high risk of biochemical recurrence (BCR) estimated to be 70% in 5 years. Additionally, this group also has a significantly high risk of metastatic disease as well as mortality related to PCa with approximately 85% dying within 10 years post-diagnosis [4]. Cancer Therapy Advisor, 2/2023 — A longer course of androgen deprivation therapy (ADT) does not improve outcomes in patients with localized, high-risk PCa receiving I-125 brachytherapy and external beam radiotherapy (EBRT). Am Cancer Soc: Sex and the adult male with cancer, 12/2023 — Artery damage from radiation—They can no longer expand enough to let blood speed in and create a firm erection. Radiation can also lead to hardening (arteriosclerosis), narrowing, or even blockage of the pelvic arteries. Prostate Cancer UK: How does hormone therapy work? 11/22 — Your side effects won’t stop straight away – it may take several months or years. For some men, the side effects may never go away completely. Rev Urol. 2005; 7(Suppl 5): S37–S43: Adverse Events Associated with Hormonal Therapy for Prostate Cancer — Impaired memory, concentration, verbal skills, and other cognitive dysfunctions in patients receiving hormonal deprivation regimens have been documented. Hormonal deprivation also has emotional effects, including moodiness and short temper, crying with minimal provocation, and feeling depressed and anxious. —————————————— END OF POST ON 3/07/26

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CA

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3 days ago

Welcome to this supportive community! To create a new post, look for the "Post" or "+" button in the app, which is typically found at the bottom or top of your screen. This community is filled with others who understand the journey and are here to offer support, share experiences, and provide encouragement along the way.

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