johns hopkins prostate cancer second opinion johns hopkins prostate cancer second opinion

They told me to expect a spike in my PSA sometime in the future, and they told me that studies are showing that a slow, steady decline in PSA is often indicative of superior results (whatever that means. (The pathology report from Cedars-Sinai kept my diagnosis at 3+4, but a second opinion at Johns Hopkins upgraded me to 4+3.) The biopsy disclosed I had some abnormal cells resembling cancer known as PINS, short for prostatic intraepithelial neoplasia. SO. !I've pasted a previous update below for background.I just got my PSA results and the numbers are still trending in the right direction. You think your doctor is underestimating how serious your cancer is. Someone advised to always get my PSA checked at the same facility in order to make sure the same protocol and lab is used, is that critical? Let me know what everyone thinks if you see anything interesting or of note here or just have some advice. The biopsy took 12 cores, two from each lesion area and 8 randomly. And by FAA Aeromedical Ruling, I'd need a few post procedure reports before being cleared to fly again.) I'll post the whole thing, my doc and my own comments, and then cut/paste all my MRI results in case anyone REALLY liked data. Greetings gentlemen! Surgical Delay and Pathological Outcomes for Clinically Localized High-Risk Prostate Cancer. Other: There is trace ascites in the mesosigmoid. Study after study confirms that doctors favor the treatment they are trained to do urologists typically recommend surgery and radiation oncologists recommend radiation. Johns Hopkins second opinion identified a PI-RADS 4 Mayo Phoenix also reviewed MRI prior to targeted biopsy. PROSTATE LESIONS: Urologists are trained as surgeons, radiation oncologists administer radiation, and medical oncologists provide cognitive oversight and general management of the cancer. The other samples produced 4 more positive cancer cores for a total of 7 of 12 positives. With world-renowned expertise, multidisciplinary specialistsand the latest data, we partner with you tomake informed decisions about managing your prostate cancer. Epub 2017 Jun 12. 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 met with the radiologist 3/17 and he leans toward an IMRT radiation regimen of 5 or 20 sessions TBD combined with ADT (6-month shot but maybe 4 months was enough). - Prostatic adenocarcinoma, Gleason score 3+4=7 (grade group 2, pattern 4: 5%) involving 2 of 2 cores (medial core: 3.5 mm, 30%; lateral core: 2.5 mm, 20%), 0.5 mm to the blue inked tissue edge (the closer) 2nd opinion"Sclerotic change at the right pubic bone with max SUV of 1.4." 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. Original Sloan Biopsy Results: As some of you may know, I am a moderator for a support group for men on active surveillance for low-risk prostate cancer. 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. Many thanks for that. Pingback: PROSTATE PROS Episode 6: Breakthroughs in Radiation PROSTATE ONCOLOGY SPECIALISTS, Pingback: Like Man, Im Tired (Of Waiting): The How-to Guide for Men with Prostate Cancer PROSTATE ONCOLOGY SPECIALISTS, Your email address will not be published. Jonathan Epstein, MD received his doctorate from Boston University. Accessibility Prostatic Adenocarcinoma It also rules out Brachytherapy. As evidenced on this site, some studies indicate that GS 6 shouldn't even be classified as PCa and that it isn't aggressive. Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. There are lots of lessons learned on the forum. Notice of Privacy Practices(Patients & Health Plan Members). Spent the night in hospital with very little pain after the first couple of hrs. After extensive discussion of his management options with his local urologist, primary care physician, and radiation oncologist, he also sought a second opinion at the Johns Hopkins Prostate Cancer Multidisciplinary Clinic at Sibley Memorial Hospital.The patient expressed an overwhelming desire to avoid surgery and any other invasive treatments. Second Opinion Results, Johns Hopkins biopsy reading of 2 slides sent by Sloan: My long-term prognosis appears to be good with minimal side effects. 4. Required fields are marked *, PHONE 310-827-7707 __________________________________________________________________________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. Mayo's report came back with the same PI-RADS 4 with the wording that it was more conspicuous but unchanged. :) Call us with any questions: 410-955-2405, ext. Cancer patients are encouraged to obtain second opinions before starting treatment. Find a doctor at The Johns Hopkins Hospital, Johns Hopkins Bayview Medical Center or Johns Hopkins Community Physicians. Director of Surgical Pathology- Johns Hopkins, http://pathology.jhu.edu/department/services/secondopinion.cfm, The guy I used along with everyone else is Jonathan Epstein, M.D. Because I had an implant in my ear, they would only give me a 1.5T MRI. Benign prostatic tissue You can call and speak with his assistant at: (410) 614-6330. 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. Heres What You Need to Know, Prostate Cancer Spotlights in 2020: A Year in Review, Find out about PSMA PET Imaging on Prostate Pros Podcast. I hope my story helps anyone out there just starting the process. According to The National Institute on Aging, prostate problems are common after age 50. and I have already proven to myself that my body is good at cell mutation, so I wanted to be careful.At the 3 year mark (6 months after last MRI), my PSA spiked to > 6. Overall, nearly 80% of men received definitive treatment 76.5% of men who obtained a second opinion from a urologist received definitive treatment compared to 81.6% who did not . I fear limiting myself to an inferior treatment because the people I talk to have hammers, therefore everything must be a nail. So, I believe I made the right choice. So, I made an appointment at Emory Proton Center (Atlanta, GA) and got their opinion. This shows very high signal intensity on the diffusion-weighted And if so, what does being accepted in a AS program look like, do I need to be present at their location? To learn your stage of prostate cancer, take the staging quiz on keytopc.com. So now things are getting exciting. 1.Rebecca L. Siegel, Kimberly D. Miller, and Ahmedin Jemal, Cancer Statistics, 2019 CA Cancer J Clin. It didnt look at changes of grading of the cancer.The chances for some type of modification based on a second opinion are even greater than the study indicated.Asking for a second opinion could lead to a significant change in surgical or medical intervention, Netto says.Even if the diagnosis error isnt catastrophic, such as advising a patient that he has cancer when he really doesnt, an error in grading can be consequential. I did genetic testing and there were no mutations of concern, and everyone agreed that there probably wasn't "enough meat on the bone" to get a good genomic test from the biopsy.After seeing Dr Joe Busch, he said he didn't see any target lesions (PIRADS2), nor did he think I was in any danger. A man with a father or brother who had prostate cancer is twice as likely to develop the disease. You may be concerned that the cancer will grow rapidly out of control before you are able to get a second opinion. Also indicated everything else was "organ confined." For cancers that are less common, second opinions can offer more treatment options. And, even working in a fairly technical field myself, I was amazed at the technology and precision of that Proton Machine. 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. It is OK to be scared. I am 58 and in very good health otherwise. Steve, Groucho was wrong when he said "i don't want to belong to any club that would have me as a member." Adenocarcinoma: 2 of the 12 samples showed High Grade PIN and one area showed "suspicious for low-grade adenocarcinoma". We experienced information overload and decision/analysis paralysis. We are vaccinating all eligible patients. I find that when I'm trapped in the cockpit not able to use the bathroom for a long time is when I experience that most. Careers. I have requested a second pathologist's opinion from Johns Hopkins based on feedback from this forum. transition zone. Clipboard, Search History, and several other advanced features are temporarily unavailable. Noted that some don't even include on report and should be looked as something to note but not obsess about. With that alone, I would likely be a candidate for continued Active Surveillance. Assessment categories for this lesion: The ADT has daunting side-effects but he said offers some improved chances of eradication, any long-term downsides that I should consider? Similarly, among those who received definitive treatment, second opinions were not associated with receiving surgery. Treatment Advice: Sloans radiation oncologist says radiation treatment will likely be the same whichever pathologist report prevails, but may add hormone therapy for about 2 months. Either the patient or the primary physician can initiate the process of getting a second opinion. Epub 2010 Oct 20. Thanks, Get directions, important phone numbers, locations and more. This is often the case when the primary physician advises an expensive treatment. 180 days after treatment PSA was .50. Cancer. If its a common cancer with a well-established standard of care, they can offer insight into clinical trials or novel treatments that may be better than the standard. An accurate diagnosis is essential to ensure the most effective treatment. (PZ) - normal Given that some 3+4 is now evident, I can no longer say that all my PCa is all 3+3 and that I can stay on AS for an extended period. Men who sought second opinions because they were dissatisfied with their initial urologist were less likely to receive definitive treatment (odds ratio, 0.49; 95% confidence interval, 0.32-0.73), and men who wanted more information about treatment were less likely to report excellent quality of cancer care (odds ratio, 0.70; 95% confidence interval, 0.49-0.99) compared with men who did not receive a second opinion. 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. 3. This is a PI-RADS 5 lesion in Obtaining a second opinion in Pathology can in a small percent of cases lead to a complete change in diagnosis in a wide range of conditions including non-cancerous growths, inflammatory disorders, infections, and cancer. It works. I suggest for all that hear, "you have cancer" that you seek more opinions! In adjusted models, obtaining a second opinion was not associated with receipt of definitive treatment . I wanted to keep my options open. Methods: The treatment of prostate cancer has evolved tremendously. But, ultimately decided on whole gland treatment using Proton Beam Radiation.So. Covid turned the 1 year into 16 months and PSA tested at 7.44 in August 2020, followed by another referral back to the urologist. Hi JM "Numerous publications show the clinical and economic benefits of obtaining a second opinion for Pathology specimens. You may choose to consider a second opinion if you: 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 wish the VA would be more informative about this disease they owe it to our veterans. Second opinions offer different things in different circumstances, Dr. Matasar says. I applaud Dr Scholz for his dedication and explanation of such a complex cancer, that has not had his common sense help available for men with prostate cancer. A biopsy was performed on 2/26. I was diagnosed with a 3T MP MRI and a 3T MP MRI guided 4 core biopsy. The purpose of starting this discussion is to gather peoples thoughts and opinions and actual experiences with Prostate Focal Laser Ablation. Ozzieville (Michael), Hello All and thanks for being here~This is my first post.My husband was diagnosed with PC (adenocarcinoma with Extensive Intraductal Carcinoma Present) a few weeks ago. P/ 310-827-7707 | F/ 310-574-4002 | [email protected]. You receive a secure, private online consultation without leaving home. Dont Miss: Bladder Control After Prostate Surgery. Dr. Nour is 100% sure that nothing has spread. Different institutions have different levels of experience when it comes to analyzing prostate biopsy samples and interpreting imaging results. Had a little complication a day after release, excessive blood/clots in urine. My girlfriend lives 2 blocks from the Emory Proton Clinic.We prayed on it and overthought the crap out of it. Most people believe that pathology reports are always correct, accurate and that what the report says is carved in stone. Cancer vaccines.For a long time, the promise of cancer vaccines that would protect healthy people at high risk of cancer has only dangled in front of researchers. I'd like to talk with former patients who have gone through the procedure. Find more COVID-19 testing locations on Maryland.gov. After a little experimenting I have been able to achieve a partial erection. ZERO - The End of Prostate Cancer Support Community. 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). If a targeted biopsy is planned, this lesion can be sampled at the same time. very activerun/cycle 6 days a week My PSA over time has been creeping up over time (1.8 - 5/16, 1.0 8/17, 2.68 8/18, 2.9 12/18, 3.28 2/19, 3.01 8/19, 3.65 2/20, 3.31 6/20, 3.88 12/20) but I was frankly a bit shocked when I received word that I have cancer. For a second opinion on the results of your prostate biopsy, there is no place better to get one than from the well known prostate pathologist, Dr. Jonathan Epstein at Johns Hopkins. Inflammation of the prostate can affect the bladder and result in discomfort and other symptoms. Note respondents were able to, MeSH In 2006 my PSA was .6. desired outcome. I retired as a Dentist at the VA and saw many veterans with a wide range of outcomes as most of them became 100% service connected when diagnosed with prostate Ca due to exposure to Agent Orange if they served in Vietnam. This approach helps to decrease side effects that can affect a patients quality of life, such as erectile dysfunction, incontinence or other urinary-tract symptoms. and I have already proven to myself that my body is good at cell mutation, so I wanted to be careful.At the 3 year mark (6 months after last MRI), my PSA spiked to > 6. If the problem is unresponsive to other treatments, your doctor may suggest a surgical procedure. Total Gleason score: 7 Here are some recent updates: Uterine cancer.Women who use chemical hair straighteners frequently could have a higher risk of developing uterine cancer than women who have never used the products, according to new findings from a national study that has followed nearly 34,000 U.S. women for more than a decade. This approach helps to decrease side effects that can affect a patients quality of life, such as erectile dysfunction, incontinence or other urinary-tract symptoms. Get a Second Opinion What can a second opinion tell me? Expert review of your case by a Cleveland Clinic specialist. 2. * Gleason Score: 3+3, Slide 1 (vs. Sloan's 3+4) 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. All wanted to do what they do, schedule treatment which at this time is only Gleason 6 which I now know is not life threating. Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. JAMA Netw Open. Forty percent of the men obtained a second opinion from urologists, most often because they wanted more information about their cancer or wanted to be seen by the best doctor . Suspicion for malignancy left anterior base-to-apex transition zone; )I contacted Dr Busch (still in Chattanooga at the time) and he called me directly to talk me off the ledge. The researchers also found that patients who obtained second opinions because they wanted more information, were seeking the best doctor, or had been encouraged to do so by family or friends were more likely to undergo surgery. With AHN Cancer Institute, you already get a world-class cancer program with leading expertise, care, and outcomes. A total of 2386 men responded to the survey (adjusted response rate, 51.1%). But, after 4 drinks or if I'm tired/jet lagged I find that sleep is more appealing than sex. An accurate diagnosis is essential to ensure the most effective treatment. I had a 3T mp MRI with coil bed, without and with contrast, at Emory on March 3. Many men name the diagnosing urologist as their treating doctor and do not seek other opinions. Experts believe that this study is the first in history to have achieved such results. I requested a second opinion from Johns Hopkins and they found 1 lesion was 3+3=6 and the second lesion was 3+4 =7, with less than 5% pattern 4. The lesion also shows focal increased permeability. Patients are often under the mistaken notion that they have to pick between their oncologist and MSK, but thats often not the case, Dr. Matasar explains. - PI-RADS for this lesion = 4/5 Prostate, left medial base: Johns Hopkins Health - Second Opinions, Second Chances, Masks are required inside all of our care facilities, COVID-19 testing locations on Maryland.gov, High Blood Pressure May Take Its Toll on Your Kidneys. Is it done through my doctor or do I do it myself with sending CDs of the MRI? Prostate cancer is the second-most diagnosed cancer in American men. - One separate small tissue fragment with prostatic adenocarcinoma, 0.5 mm in linear length Following application of the relevant exclusion criteria, 2365 respondents remained in the analytical cohort. 1. * He said probably not candidate for watchful waiting because of tumor volume shown and seen on MRI. And it is OK to have paralysis by over-analysis. When facing an intricate disease like prostate cancer, the above scenario is far too simple to have a promising outcome. What are you doing about it? The symptoms of acute bacterial prostatitis are similar to those of CPPS. HMO members may also be discouraged from trying expensive treatments that have only a small chance of success, even if that chance is real. But I refuse to sit still, I continue to research and to plan, as best I can. 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. One to a 3+4=7 and the other to a 3+3=6. Men were asked if they obtained a second opinion from a urologist, and the reasons why. A report with the diagnosis will be faxed to your doctor. Have been diagnosed with a serious or rare health condition. Us Too Prostate is a great club and many of you have helped me a lot already. - Benign prostatic tissue 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. Some specialize in reading only slides that come from a specific organ while others are generalists who read many different pathology slides from many different organ systems. Thanks! present in bladder. I followed up with the original pathologist to compare and he was more forthcoming. 2017 Oct;22(10):1197-1211. doi: 10.1634/theoncologist.2016-0429. Rectal cancer.A small trial that saw 18 rectal cancer patients taking the same drug, dostarlimab, appears to have produced an astonishing result: The cancer vanished in every single participant. Only took Motrin and Tylenol for pain after release. This teamwork ensures the best possible patient outcomes. We are vaccinating all eligible patients. And thanks again for making this such a great support group! and transmitted securely. Radhakrishnan A, Grande D, Ross M, Mitra N, Bekelman J, Stillson C, Pollack CE. Numerous publications show the clinical and economic benefits of obtaining a second opinion for Pathology specimens. Due to the spread of the Coronavirus worldwide and the first confirmed case of the Coronavirus disease in Turkey, the executive team of the Anadolu Medical Center has taken preventive measures to protect the patients and their relatives. Here are seven tips for seeking second opinions for prostate cancer: Before getting a second opinion, its important to know your stage of prostate cancer. PSA was 3.0 in 2011 and rose to 6.0 in late 2013. My family doctor was alarmed because such a steep increase in prostate-specific antigen could be a sign of prostate cancer. Consultation with your nurse care manager. of tumor in the rectal prostatic angles. 4. Johns Hopkins Medicine A commercially available genomic test may help oncologists better determine which patients with recurrent prostate cancer may benefit from hormone therapy, according to new research from the Johns Hopkins Kimmel Cancer Centerand 15 other medical centers. I just received a second opinion report from Johns Hopkins. I am an airline pilot with exposure to radiation, jet fuels/fumes, etc. The Radiation Oncologist said he would be comfortable waiting a little more, but he wasn't confident that I'd grow a target lesion, nor would I be able to wait years before having to do "something." In circumstances where there may not be a single established standard of care, we can ensure the treatment plan integrates the most current, up-to-date data, Dr. Matasar says. Got the fiducials placed, the Space-OAR gel placed, mold made, and had the pre-treatment MRI and CT Scan. After applying exclusion criteria, the final analytic cohort included 2365 respondents. ---------------------------------------------------- However, many insurance and health care companies do pay for such opinions and acknowledge the importance of second opinions. So, I also sent this MRI result to Johns Hopkins for a second opinion. It took me awhile but minutes ago received my second opinion from Johns Hopkins. 1. For this study, published in the journal Cancer, 2386 men in the greater Philadelphia area, who were diagnosed with prostate cancer between 2012 and 2014, responded to survey questions. 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. It hasn't let me down. 6: Prostate, left medial base Based on the results, our experts can provide you with an individualized treatment plan before you leave. 9. You're also at greater risk of prostate cancer forming before age 50. If the problem is unresponsive to other treatments, your doctor may suggest a surgical procedure. A fusion biopsy was performed in late May and I just received those results last Thursday. I have posted here before, now with an update. 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. My involvement is below maximum of 15% of core. Of course, my old school Urologist recommended surgeryHe, of course, knew the best robotic surgeons around.Anyway.