__________________________________________________________________________July 2022I've neglected to make journal entries for a couple years, so I will recap below and continue with what I have done and what I have learned.In 2018, at the age of 48, after a routine physical that showed a PSA of (4.X) and after a TRUS biopsy, I was diagnosed with PCa. AHN patients have unprecedented access to the Johns Hopkins Center for Fetal Therapy. Even if someone is being seen at a different academic center, the trials and other treatment options that we offer here may be different. Last checkup (July 2022) my PSA was .46 and it is currently at .32.I am still eating primarily a plant based diet (only lean meats/cheeses/eggs about 10% of my diet) and maintaining steady weight and I am still quite active physically.As for symptomswith 5mg Daily Cialis the occasional ED symptoms have pretty much gone away. What are you doing about it? F. Prostate, left apex, core biopsy: I wish the VA would be more informative about this disease they owe it to our veterans. 2/23 PSA 4.7/fPSA 12% taken for 4K score (lab #2) Overall, obtaining second opinions was not associated with changes in treatment choice or with improvements in how patients viewed their quality of cancer care. As a result, patients struggle to differentiate bias from fact. Unfortunately, what you do not realize may harm you! PROSTATE LESIONS: Surgery took about 3 hrs. I frequently make a 2 hour car ride and I have to stop about 25% of the time and when I don't, the urgency is a bit more evident and with the urgency come some hesitancy, but not terrible. I have requested a second pathologist's opinion from Johns Hopkins based on feedback from this forum. This suggests that for some men, second opinions offer a way to pursue the treatment they already planned on, rather than to explore other treatment options, according to study authors Dr. Archana Radhakrishnan, of Johns Hopkins University in Baltimore, and her colleagues. I luckily found this webpage and I started reading everything I could get my hands on. Please don't hesitate to make any observations or ask questions. If the problem is unresponsive to other treatments, your doctor may suggest a surgical procedure. They replied they are sending the slides but they said they're looking into the DX test and will get back to me once they have that information. Centro Diagnostico Italiano , Milan, Italy, Manfred Dietel, M.D.Institute of Pathology Charit, Humboldt University of Medicine, Berlin, Germany, Jonathan I. Epstein, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Robert J. Kurman, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Elizabeth Montgomery, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Manuel Sobrinho-Simes, M.D.University of Porto, Porto, Portugal, Ronald S. Weinstein, M.D.University of Arizona, Tuscon, AZ, Franco VisinoniMilestone Medical Technologies, Bergamo, Italy, Read Also: Nhs Prostate Cancer Risk Calculator. If the problem is unresponsive to other treatments, your doctor may suggest a surgical procedure. Out of 12 cores, 9 are positive. - Prostatic adenocarcinoma, Gleason score 3+4=7 (grade group 2, pattern 4: 10%) involving 2 of 2 cores (medial core: 0.5 mm, 4%; lateral core: 1.5 mm, 10%), 1 mm to the blue inked tissue edge (the closer) Are you sure you want to block this member? Therefore, the value of these second opinions remains unknown. Over kill and redundancy I know, but it's my money, my prerogative. A patient suffering from an enlargement of the prostate may have pain in his lower abdomen and genitals. -------------------------------------------------------- A newly published paper by Fischer et al. Dont Miss: Function Of The Prostate Gland And Seminal Vesicles. He said that he saw what JHs was referring to but did not determine EPE for a variety of reasons. Experts believe that this study is the first in history to have achieved such results. Some pathologists have more experience than others. Younger men also sought the 'best' doctor. - Prostatic adenocarcinoma, Gleason score 3+4=7 (grade group 2, pattern 4: 5%) involving 1 of 2 cores (lateral core: 4 mm, 35%), 0.1 mm to the blue inked tissue edge He is the past president of the International Society of Urological Pathology. In those cases, patients are tremendously grateful for having received the advice and encouragement to get a second opinion, Dr. Matasar adds. This may include imaging, blood tests, prior treatment, and pathology reports. 2nd opinionBone Scan:"Mild increased activity is seen in the right symphysis corresponding to the abnormalities on the prior PET/CT examination. In those cases, patients are tremendously grateful for having received the advice and encouragement to get a second opinion, Dr. Matasar adds. )I contacted Dr Busch (still in Chattanooga at the time) and he called me directly to talk me off the ledge. * Seminal vesicle invasion: None. Benign prostatic tissue Breast cancer.A new study suggests surgery may not always be necessary for all breast cancer patients. I now have my list whittled down to 3. BASE DATA: Those readings were reported on a second opinion by Dr. Epstein. The Johns Hopkins University, The Johns Hopkins Hospital, and Johns Hopkins Health System. When I was diagnosed I really thought that I will live only 2 years. My direct phone (mobile) number is 703-992-3662, or you can private message me via this platform. This teamwork ensures the best possible patient outcomes. Reinterpretation of imaging scans and lab tests. All rights reserved. Either the patient or the primary physician can initiate the process of getting a second opinion. 3T MRI with coil is done initially, along with a TRUS biopsy. Call us with any questions: 410-955-2405, ext. There are also some cases of the test showing no depletion but being wrong. By taking the extra time to seek a second opinion, you have a better chance at finding the most up-to-date approach and an experienced doctor. HMO members may also be discouraged from trying expensive treatments that have only a small chance of success, even if that chance is real. MONDAY, Nov. 7, 2016 Second opinions have little impact on prostate cancer patients treatment decisions, new research suggests. 2.Tammy Jiang, Christian H. Stillson, Craig Evan Pollack, Linda Crossette, Miupdachelle Ross, Archana Radhakrishnan, and David Grande, How Men with Prostate Cancer Choose Specialists: A Qualitative Study, Journal of the American Board of Family Medicine: JABFM, 30(2), (2017): 220229. Intensity: min 148 / Max 459 However, older men 75 years were the least likely to report obtaining a second opinion due to dissatisfaction with their initial urologist. government site. In order to receive appropriate treatment, patients must understand the treatment options that are available. I'm turning 58 in one week. This is the most common urinary tract problem in men under 50, and the third most common in men over 65. An acute bacterial infection can cause a burning sensation. My family doctor was alarmed because such a steep increase in prostate-specific antigen could be a sign of prostate cancer. When I inquired with the oncologist that I had selected for my therapy before receiving the second opinion whether I would be a candidate for Active Surveillance considering the downgrading, she said 'no' due to the intraductal component. 3/5 doi: 10.1002/cncr.30412. Note that I'm trying to get a second opinion from Johns Hopkins but Mayo, where the biopsy was performed, appears incapable of processing my request. The symptoms of acute bacterial prostatitis are similar to those of CPPS. Same with the amount of how much pattern 4. How to Get a Second Opinion Our team at Johns Hopkins has a dedicated service to interpretation of brain tumors and render second opinions on a daily basis. Federal government websites often end in .gov or .mil. (I must say that those low numbers concern me a bit.) These findings are suspicious for degenerative changes however a subtle/early metastatic lesion cannot be excluded and continued periodic follow-up is recommended." And just this week, 1 YEAR post treatment, it is .46. Blessings. If they have an enlarged colon, their physician can perform a TURP procedure. There is no evidence T2W MRI score= 5, DW MRI score= 5, DCE MRI score=positive Negative cancer in lymph nodes, seminal vesicles, and all margins. Pathology reports are subjective. Thank you, After more than three years on active surveillance, I've pretty much decided to have focal brachytherapy for my prostate cancer. First of all we would like to emphasize that the health of our employees, our patients and their relatives is our first priority. According to the doctor it is around 3 mm. If you are diagnosed with a urologic cancer, including but not limited to the prostate, bladder, kidney, and testicular or urinary tract, its important to consider a second opinion. Time moves fast when dealing with cancer, but Doctors dont. They did another 3T-MPMRI (Siemens machine) and it showed a faint area, near the margin, and very close to the down stream sphincter of prostate. We can help with your case. To learn more about how to get a Neuropathology second opinion, please visit our Neuropathology Division second opinions website. Visit and Like ZERO - The End of Prostate Cancer on Facebook, Sign up to receive emails and news from ZERO - The End of Prostate Cancer, Search prostate cancer clinical trials and studies. Lesion #1 (index): PI-RADS v2.1 score 4, lesion measuring 10 mm centered at the right mid/apex posteromedial peripheral zone; findings equivocal for extraprostatic extension; no evidence of seminal vesicle invasion; The low ADC value in this lesion increases the likelihood of Gleason grade group 2 or higher. Confused about Pathology report and course of action, Phone Number for John's Hopkins Radioogy Second Opinion. The primary goal is to be cured with the least toxic, most effective approach. Surabhi Dangi-Garimella, PhD. When I read the forums and questions on this site everyone mentions their Gleason Score from their biopsy. We are vaccinating all eligible patients. Any input on this would really be appreciated. Compared with other men, African-American men and men with a family history of the disease are at higher risk of developing prostate cancer. Its gone.I have been advised to have a Axumin Pet scan as follow up as the first pathology report indicated perineural invasion present as well as probable introductal carcinoma. The .gov means its official. I am doing my own research, but I am curious as to thoughts of the best possible MRI to obtain to give me the best chance at finding something the needle biopsy didnt find. It is very rare (<3% of all prostrate cancers) and potentially very lethal (one study showed that 59% of men in the study with Gleason scores of 5 had died within 3 years and it had metastasized in 13% of the remaining men). The problem is that all 3 pathologies noted an intraductal component. It is best to begin by talking with the doctor who made your initial prostate cancer diagnosis. not hear all the viable treatment options or receive the most up to date They basically said it didn't matter. I want to insure that the Imaging was read correctly and nothing was overlooked or missed. My long-term prognosis appears to be good with minimal side effects. Lymph nodes: There is no suspicious lymphadenopathy in the pelvis. There is no one-size-fits-all treatment for prostate cancer. I was on disability from work the entire time (not that I was disabled, but as a pilot, I couldn't very well work and get treatment at the same time. Overall, obtaining second opinions was not associated with definitive treatment or perceived quality of cancer care. First 6 week PSA is undetectable. Axial T1-weighted images of the pelvis show no bony or bulky nodal disease. Check Biopsy and Imaging Results for Accuracy. My most recent biopsy resulted in two cores with Gleason 4+3=7 and one with 3+3=6. Got the fiducials placed, the Space-OAR gel placed, mold made, and had the pre-treatment MRI and CT Scan. Maybe lycopene and pomegranate have helped. John. We provide second opinions on the full range of gynecologic cancers: Ovarian Uterine Cervical Vulvar Vaginal Fallopian tube Placental tumors Some peritoneal cancers Johns Hopkins Medical Laboratories 1620 McElderry St. Reed Hall Rm 315 Baltimore, MD 21205 Fax (410) 614-7712 Phone (410) 955-2405 8 am - 5 pm Normal LAB hours are: 5:30 am - 4:30 pm Mon-Fri He also stated that he would ONLY recommend FLA if done within a trial. * He said probably not candidate for watchful waiting because of tumor volume shown and seen on MRI. Some of the more common treatments that you and your doctor may discuss include: Prostate cancer experts at the Brady Urological Institute have created tools that help patients and doctors across the world assess risk and make treatment decisions. And by FAA Aeromedical Ruling, I'd need a few post procedure reports before being cleared to fly again.) (The pathology report from Cedars-Sinai kept my diagnosis at 3+4, but a second opinion at Johns Hopkins upgraded me to 4+3.) Your email address will not be published. -------------------------------------------------------- Urology. I don't know if the FLA could affect the results, or if it was just done because it was not in the study parameters of the test. Every year I got a PSA and DRE during my annual physical. However, a new study by researchers at the Johns Hopkins University has found that second opinions did not change treatment choice or the persons perception of the quality of care they receive, at least among low-risk men. The site is secure. If these do not work, your symptoms could progress and become chronic. 1. Diffuse probable benign peripheral zone changes limit evaluation for Extraprostatic extension: negative The other samples produced 4 more positive cancer cores for a total of 7 of 12 positives. has now confirmed this assumption through a careful retrospective analysis of data from > 450 men whose records could be identified in the SEARCH database, all of whom received surgical treatment for Gleason 8 to 10 prostate cancer. I guess TWO national centers of excellence are better than one? THANKS! PELVIC LYMPH NODES: No adenopathy. Prostate, left medial base: Low volume post-void residual urine is present in the bladder. I am an airline pilot with exposure to radiation, jet fuels/fumes, etc. Move ahead to Dec 2020. * Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project )As for side effectsI occasionally have some urgency/hesitancy having to pee. Cancer 2017;123:1027-34. Secondary Gleason grade: 3 Because physicians may differ in their approach to treating breast cancer, its very important to check with a breast cancer expert to know youre receiving the best treatment for you. Get directions, important phone numbers, locations and more. Further, among men with low risk disease, we did not observe a significant association between second opinions and receipt of definitive treatment or surgery. fibromuscular stroma, anterior prostatic contour is smooth. I can do radiation as a monotherapy. FOIA Prostate, left lateral apex: Accessibility He recommended waiting and watching at that time due to the lower PSA reading. The results were ambiguous. A new study by researchers at the Johns Hopkins University has found that second opinions did not change treatment choice among men diagnosed with low-risk prostate cancer. I certainly would - after all, there's a certain brotherhood bond here. The study included nearly 2,400 men in the Philadelphia area recently diagnosed with localized prostate cancer. Prostate Cancer Pathology in 2021 | Jonathan Epstein, MD | PCRI 2021 Conference, Why Prostate Cancer Survivor John Shearron Thinks Its Important To Do Your Research | PCRI, John Hopkins Prostate Cancer Second Opinion, a higher risk of developing uterine cancer, surgery may not always be necessary for all breast cancer patients, The cancer vanished in every single participant, Long Term Side Effects Of Brachytherapy For Prostate Cancer, treat rare and complex conditions through breakthrough fetal procedures, Prostate Cancer External Beam Radiation Side Effects, Can Enlarged Prostate Cause Blood Clots In Urine, Life Expectancy Stage 4 Prostate Cancer No Treatment, Prostate Cancer Spread To Skull Prognosis, Diagnostic Procedures For Prostate Cancer. If you are considering undergoing a specialized treatment, such as cancer surgery, within your HMO, it is important to inquire about the number of such procedures performed each year by the HMO and the results. 2018 May;115:133-138. doi: 10.1016/j.urology.2018.01.048. The Journal of the American Board of Family Medicine published a study in 2017 that found that many patients do not get a second opinion outside of their PCPs original referral2. When to move from Active Surveillance to Treatment for Prostate Cancer? Thankfully, prostate cancer is extremely slow growing. So the pathologist suggested a second opinion. Men who sought second opinions because they were dissatisfied with their initial urologist were 51 percent less likely to receive definitive treatment, and men who wanted more information about treatment were 30 percent less likely to report excellent quality of cancer care compared with men who did not receive a second opinion. I also sent my biopsy slides to Johns Hopkins for a second opinion (Epstein's read was 3+4, but with lower pattern 4 involvement than the local pathologist.). The peripheral zone has a patchy signal pattern. If I am rested, I find that I am more ready than if I am not. I am also talking with Dr Nour and Dr. Walser and possibly others to see if I am a good candidate for Focal Laser Ablation. John, I was diagnosed on 11 December, 2013. Prostate cancer is the second-most diagnosed cancer in American men. National Library of Medicine Please enable it to take advantage of the complete set of features! Study after study confirms that doctors favor the treatment they are trained to do urologists typically recommend surgery and radiation oncologists recommend radiation. If they do not cover this cost and you must pay out of pocket, keep in mind that a second opinion could save you from having to pay (financially and physically) for additional treatment down the line. I'd like to talk with former patients who have gone through the procedure. Now, though, encouraging animal data and preliminary studies in human patients are making some doctors feel optimistic. prostate volume). I worked out every day and it wasn't until the last week did I feel a bit fatiguedand experience a bit of urgency and hesitation having to peeflowmax fixed that right up!90 days after treatment my PSA came in at .56. I am at that critical juncture in which I at least need to formalize a plan, select a doctor/facility to work with, and continue my testing to make sure I have what I think I have. Luckily, his report co-coincided with the original QDx report. We have a surgery date set up for the end of July at Johns Hopkins (our second opinion team).His stats:63yo, non smoker, 167lbs, Vegetarian/Vegan diet no other known health issuesWalks dogs for a living and cares for our small farmPSA 3.3 (Jumped from 1.6 in a year)Biopsy Scores 3+5, 4+3. The results seemed fairly benign and my urologist and I decided to continue to monitor with 2 more PSA tests and then consider an MRI in April 2021. In terms of cancer, changes can be from cancer to benign (or vice versa) or from one type of cancer to another, which could have a significant impact on treatment and prognosis. Two things you learn here is get a second opinion from Johns Hopkins on biopsy and get treated at Center of Excellence. * Gleason Score: 3+4 (4 of 6 specimens), 14 specimens taken Thanks to all of you for sharing! Most reputable HMOs can, however, deliver state of the art treatment for most cancers. Johns Hopkins second opinion identified a PI-RADS 4 Mayo Phoenix also reviewed MRI prior to targeted biopsy. Perineural invasion is identified Total Gleason score: 7 He spent an hour on the phone reassuring me that I didn't need to rush into anything, and they he'd love to scan me 6-8 weeks after my TRUS Biopsyhave to let the trauma and all the blood leave the prostate for a good image. But I've had trouble getting Dr. Chang's office to provide any patient referrals. Immediate means 6 weeks just to see his NP. - Perineural invasion is present 5. Metastasis. Similarly, among those who received definitive treatment, second opinions were not associated with receiving surgery. Similarly, among those who received definitive treatment, second opinions were not associated with receiving surgery. H. Prostate, lesion #2, core biopsy: Also Check: Prostate Cancer Stage 7 Treatment. I opted to waive the biopsy, wait 1 year and test again. EVERY DAY, they'd take a low dose X-RAY and low dose CT to align the fiducials and ensure my bladder was full and the bowel was empty. As some of you may know, I am a moderator for a support group for men on active surveillance for low-risk prostate cancer. Radhakrishnan A, Grande D, Mitra N, Pollack CE. With The Clinic by Cleveland Clinic, patients have access to Cleveland Clinics 3500 specialists. Netto points to prostate cancer as an example: If your diagnosis changes from a higher grade to a lower grade cancer, it could mean having the option to avoid radical treatment.Seeking second opinions is becoming standard practice, and it is mandatory at Johns Hopkins. Also, Oncotype subsequently invalidated my results because they found in the history that I had a prior FLA. Doctors can review their peers treatment suggestions and explain why they agree or disagree. * Adjacent organ invasion: None. A diagnosis is usually reached within 3-5 days of your slides' arrival at Johns Hopkins. Reasons for obtaining a second opinion from urologists. SO. 2: Prostate, right lateral base Seminal vesicles are normal. No definitive evidence of distant metastatic disease is seen." This championship swimmer sought a second opinion at Johns Hopkins. Second opinions are a common practice in any area of medicine that is complex and that has multiple treatment options available. Prostate Cancer Grading: "We were surprised by the relatively large percentage of men who obtain second opinions for their prostate cancer," said lead author Dr. Archana Radhakrishnan of Johns Hopkins University in . I hope my story helps anyone out there just starting the process. Are there urologists out there that don't routinely order the DX test to get a better idea of low and intermediate risk cancers? Two weeks later I meet with my Johns Hopkins Dr. A few weeks later and just before my meeting with my new Johns Hopkins Dr I get the second opinion results from both biopsy and MRI. Urologists are trained as surgeons, radiation oncologists administer radiation, and medical oncologists provide cognitive oversight and general management of the cancer. Dr. Albert Chang at UCLA appears to be the best in the biz for high dose rate (HDR) focal brachytherapy. But, after 4 drinks or if I'm tired/jet lagged I find that sleep is more appealing than sex. Based on this forum, Im very lucky for this outcome. In severe cases, a catheter may be required to relieve the symptoms. Second Opinions An accurate diagnosis is essential to ensure that the correct and most effective treatment is given. Whether you want expert confirmation, lack understanding or confidence in your treatment plan, have a rare or unusual type of cancer, your cancer isnt responding to current treatment its reassuring to know that you have options through a second opinion. 2. This sounds to me like they're not familiar with the Oncotype DX test and makes me wonder how common is the test. Expert review of your case by a Cleveland Clinic specialist. Have you heard of PRECISE follow up score for an MRI? One to a 3+4=7 and the other to a 3+3=6. How much is the fee for an opinion of my recent MRI? Dr also stated he was able to totally spare one of my nerves, but to get margin may have damaged one. Interesting differences: Extracapsular extension: The prostatic capsule is preserved. Also these lesions did not abut or touch the wall of the prostate. I say bullshit to them. The percentage of Gleason grade 4 and/or 5 is 5 % EDI am now 52 and not quite functioning like I did 4+ years ago. The biopsy took 3 samples from the targeted region plus 16 sextant. My question is regarding the results of an MRI guided biopsy into a distinct tumor vs. subsequent Oncotype Dx Results. JAMA Netw Open. ---------------------------------------------------------- Unfortunately, monetary incentives create biases that can work against patients best interests. It can be caused by many factors, including infection and inflammation. I was offered to have my first biopsy sent to Johns Hopkins for second opinion and said why not? which came back with Gleason 9 three weeks after having the what we thought was G-7 ablated.

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