You think your doctor is underestimating how serious your cancer is. My prior Prolaris study (2018) before the FLA was very low risk. 2. notable articles of 2016 - Johns Hopkins Bloomberg School of The urologist offered surgery and radiation as options on 3/10 when we met. Every year I got a PSA and DRE during my annual physical. Prostate Cancer News, Reviews & Views: Second opinions Now, I would like to send Radiology for a similar review. No extraprostatic extension. He basically said it was possible, but that he did not agree. Hoping that after I go through this that my advice to others will be able to guide them and that they can learn from my experience, as I feel I am gaining a solid foundation from both a practical and mental standpoint. Abstract Context: In men who develop an elevated serum prostate-specific antigen level (PSA) after having undergone a radical prostatectomy, the natural history of progression to distant metastases and death due to prostate cancer is unknown. As some of you may know, I am a moderator for a support group for men on active surveillance for low-risk prostate cancer. Im currently 67 years old. A small early-stage clinical trial found that a carefully selected group of patients who responded remarkably well to chemotherapy could skip surgery altogether. I had been carefully watching as my PSA increased to 3.2 from 3.9 in summer 2010. So the pathologist suggested a second opinion. About 80 percent of prostate cancers are diagnosed at a localized stage, which means that the cancer hasnt spread outside of the prostate. There is hope. I have been drinking out of an information fire hose. Receiving a second opinion was not associated with perceived quality of prostate cancer care. A report with the diagnosis will be faxed to your doctor. It is OK to not understand all the terminology. 3. 180 days after treatment PSA was .50. So, I believe I made the right choice. HMO members may also be discouraged from trying expensive treatments that have only a small chance of success, even if that chance is real. When you get a diagnosis of breast cancer from your doctor, its not uncommon to get a second opinion. However, seeing him will be another 8 weeks, but he wants my biopsy slides (second opinion) before we meet. Seminal vesicles: The seminal vesicles are normal and symmetrical bilaterally. The people were great. Prostate dimensions: 4.1 x 2.8 x 3.4 cm Video consultation and written report from your expert. Would you like email updates of new search results? Best practices dictate that you obtain a second confirmatory pathology evaluation. Their MRI was more sensitive and found there were actually 2 lesions close together that looked like one on the prior MRIs. Benign Processes: Note respondents were able to, MeSH 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. Has anyone else run into this where the gleason score is favorable, but the genomic (specifically Oncotype) test is not? This fee includes: Studies show the clinical and financial benefits of obtaining a pathology second opinion. Generally, the symptoms can stabilize over time. Usually, patients obtain a second opinion after being referred to a second physician or to a special team of experts in a cancer center, called a multidisciplinary team. - DCE = (+) Getting a second opinion can sometimes lead to a complete change in diagnosis in non-cancerous growths, inflammatory disorders, infections, cancer and other conditions. First let me just say what so many others have previously stated, the thought of going on this journey alone is frightening, I cant imagine traveling this road alone. Need guidance choosing from multiple treatment options. D. Prostate, left base, core biopsy: We have a consult on Friday with the 1st opinion doc to review all tests. 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. Asking for your comments: Symptoms include leaking and discomfort. International Patients: How to Request a Remote Second Opinion From what I've learned from Dr. Scholz videos at PCRI, and from posts on this site it would lead me to believe the DX test is fairly common knowledge. My girlfriend lives 2 blocks from the Emory Proton Clinic.We prayed on it and overthought the crap out of it. My current situation is age 67, no health issues, never had erectile dysfunction or incontinence, 6 tall, 175 lbs, generally fit and active. So, I go one better, I call up Johns Hopkins and find a Dr who does DaVinci Prostate Surgery. 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. Find more COVID-19 testing locations on Maryland.gov. If they have an enlarged colon, their physician can perform a TURP procedure. Wow, I sound like a snob now! Benign prostatic tissue Thanks! I really liked the new group I went to as they identified the lesion right away, unlike the radiologist who performed the first procedure, and they also have a urologist on staff as well monitoring everything. (Recommended by my oncologist, Dr. Mark Scholz.) Asking about other experience with conflicting Prostate Biopsy Opinions. Thank you for your participation! I would appreciate hearing from that 2.8% out there who have an intraductal component. Unfortunately, what you do not realize may harm you! We are vaccinating all eligible patients. Metastatic disease considered less likely for this pattern. Total Gleason score: 7 Now the oncologist wants to perform a PSMA Pet Scan. Everything seems to be on track to remove the cancer and be cured! intricate disease and not all doctors have the same amount of experience The total number of cores identified is 3 About this time, I started reading this forum and my ignorance starts going away. It was easy. )I contacted Dr Busch (still in Chattanooga at the time) and he called me directly to talk me off the ledge. While the size of an enlarged prostate will influence the extent of urinary symptoms, men may experience a range of urinary symptoms. However, there are other cases when a second opinion results in a very different diagnosis or set of treatment recommendations. We have sought a second opinion and all tests are being reviewed by that second team.My question has to do with the symphysis pubis. Whats right for you will depend on the stage of the cancer, your level of risk and your general overall health. Luckily, his report co-coincided with the original QDx report. My diagnosis is T2c, Gleason 7 (3+4). I'd like to talk with former patients who have gone through the procedure. 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). Our regional community network integrates academic specialty cancer care at Allegheny General Hospital and West Penn Hospital and at more than 20 community cancer centers throughout the region. Prostate, right medial base: I had a follow up 3T MRI guided biopsy on March 18 at Emory. MRI RE-READ #1 (well known radiologist, but free advice over phone, but no written report): - Follow-Up Score (PRECISE) for this lesion = Stable MRI appearance: no new focal/diffuse lesions. 2011 Feb;29(1):3-9. doi: 10.1007/s00345-010-0602-y. Second opinions are more likely to be comprehensive, or inclusive of every possible perspective, when performed in a cancer center with a multidisciplinary team, which usually includes surgeons, oncologists, radiation therapists, and sub-specialist oncologists. We surveyed men who were diagnosed with localized prostate cancer in the greater Philadelphia area from 2012 to 2014. 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. I wanted to keep my options open. Got the fiducials placed, the Space-OAR gel placed, mold made, and had the pre-treatment MRI and CT Scan. There are also some cases of the test showing no depletion but being wrong. There are also many reasons why you may want to seek another opinion during the course of your cancer care. An accurate diagnosis is essential to ensure the most effective treatment. Also Check: Prostate Cancer Stage 7 Treatment. Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. But, ultimately decided on whole gland treatment using Proton Beam Radiation.So. * Membranous urethral length: 1.2 cm Prostate Cancer | Johns Hopkins Brady Urological Institute BONES: No suspicious osseous 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. We provide second opinions on the full range of gynecologic cancers: Ovarian Uterine Cervical Vulvar Vaginal Fallopian tube Placental tumors Some peritoneal cancers You're also at greater risk of prostate cancer forming before age 50. Reasons for obtaining a second opinion from urologists. Benign fibromuscular stroma; no prostatic glands are identified * Prostate volume: 22 cc Its in your best interest to ask for another look at a cancer diagnosisIf youve recently been diagnosed with cancer, its wise to ask for a second opinion on your pathology specimen.Johns Hopkins researchers with the Urological Pathology Consult Division, led by Jonathan Epstein, M.D., first reported on biopsy errors a decade ago, when they found a margin of error in prostate cancer diagnoses large enough to give them pause. I then had the PHI test which showed PSA 8.70 and overall PHI 125.9. Benign prostatic tissue Seeking a Second Opinion - American Cancer Society Masks are required inside all of our care facilities. More medical freakouts. I am relatively new to this forum and trying to educate myself as to my best course of treatment. He said that it will improve in the future due to future improvements in the treatments. With The Clinic by Cleveland Clinic, patients have access to Cleveland Clinics 3500 specialists. They confirm everything except question whether one of the core samples is a 3+3 or 3+ 4. have no symptoms, and yet you have cancer? PCPs can be a great help to navigate the medical marketplace and provide an unbiased voice of reason when it comes to making hard choices. I measure PSA frequently, and it is stable and slightly declining with the last score at 5.5. 6 cancers that are the toughest to diagnose are prostate, bladder, head and neck, soft tissue, skin and lymph system. Also, infection was noted, so the current PSA is high in part due to prostatitis. When Primary Care Providers (PCPs) Help Patients Choose Prostate Cancer Treatment. 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. That's the good news. MRI June 2017 again at SMIL. Prostate cancer is a malignant (cancerous) tumor of the prostate, a gland found only in men. The biopsy took 12 cores, two from each lesion area and 8 randomly. He is the past president of the International Society of Urological Pathology. So, I also sent this MRI result to Johns Hopkins for a second opinion. Our gynecologic pathology team can also help determine if the tumor is localized or has metastasized from another region of the body. Second Opinions - Bladder Cancer | Johns Hopkins Pathology The study included nearly 2,400 men in the Philadelphia area recently diagnosed with localized prostate cancer. Include Your Primary Care Physician as Member of Your Treatment Team. Not all cancers are the same and not all treatment plans are absolutely clear. Benign fibromuscular stroma; no prostatic glands are identified Explore our state-of-the-art patient care facilities in the Sheikh Zayed Tower. asymmetric central zone tissue more pronounced on the left. I'm going to reach out to UCLA to see what they can do. the transition zone. Although a large proportion of men with localized prostate cancer obtained a second opinion, the reasons for doing so were not associated with treatment choice or perceived quality of cancer care. Xia L, Talwar R, Chelluri RR, Guzzo TJ, Lee DJ. 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. The primary goal is to be cured with the least toxic, most effective approach. I had the MRI in April 2021 and it showed a PI-RADS 4 lesion. Enter the last name, specialty or keyword for your search below. PMC I fear limiting myself to an inferior treatment because the people I talk to have hammers, therefore everything must be a nail. I would love to hear from anyone who has been involved in the Chicago study. Prostate cancer is the second-most diagnosed cancer in American men. 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. You can find out by reviewing your plan or by reaching out to your insurance company. I was to follow up with my new Urologist (another surgeon) for 3 months PSA checks and annual 3T-MPMRI.My PSA checks were static and the next year's MRI looked just like the first. Unlike pathology labs in most hospitals, Jonathan Epstein's lab at Johns Hopkins has pathologists who specialize in reading prostate tissue samples. Good Morning Brothers- Eager to hear what everyone thinks or has anything they see in the report I wouldn't have thought of. I talked with Dr. Epstein who expressed Johns Hopkins' conservative views to not underestimate GS 6 and to consider surgery and/or radiation that have been used successfully for many years in saving lives. Interesting differences: He schedules appointments with a Radiologist and two local surgeons. This has only low-level nonspecific activity with SUV max of 2.05 and may be due to degenerative changes at the symphysis pubis." I'm trying to figure out why the PSA keeps rising. Your doctor is not sure what is wrong with you. Just took time off and then life happened.Thanks in advance for the insights. Types of questions that pathologists often address in our second opinions: A doctor at MSK can collaborate with another doctor to offer support and help ensure the best outcomes. sharing sensitive information, make sure youre on a federal - DWI-ADC = 4/5 This may include imaging, blood tests, prior treatment, and pathology reports. -------------------------------------------------------- !I'll try editing a previous post and see if it reads like a journal instead of creating a new thread every update.I just got my PSA results and the numbers are still trending in the right direction. And 2 cores from left apex of 3+3=6 with 10% involvement. Second opinions are a common practice in any area of medicine that is complex and that has multiple treatment options available. This Dr is in charge of active surveillance program at JH so I knew that he wouldnt recommend surgery unless it was really needed. One of the problems with second opinions is that insurers may not cover the expense. Get a Second Opinion | Johns Hopkins Pathology Race and ethnicity. 2. Three lesions: 1) GS 6 involving 30% of one core; 2) GS 6 involving less than 5% in one core; and 3) GS 6 involving less than 5% in another core. Read Also: Long Term Side Effects Of Brachytherapy For Prostate Cancer. 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. Video consultation and written report from your expert. Even at the age of 48, he thought I would be a good candidate for AS. The https:// ensures that you are connecting to the I've been on AS since April 2016. Ask us questions on this webpage. Contact us or find a patient care location. Urology. MRI RE-READ #3 (National Cancer Center of Excellence): In the United States, studies estimate 72 new cases of PN for every 100,000 people between the ages of 18 and 64 years old. For these reasons, it is a good idea for HMO members to get a second opinion and make sure they are informed about clinical trials or other promising new treatments. Maybe lycopene and pomegranate have helped. With no travel needed and no red tape, its easy to get a second opinion, all from the comfort of your home. If I am rested, I find that I am more ready than if I am not. Second opinions offer different things in different circumstances, Dr. Matasar says. His second opinion just came back. 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. Benign Processes: A total of 2386 men responded to the survey (adjusted response rate, 51.1%). 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. 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.). Find more COVID-19 testing locations on Maryland.gov. It's a bit confusing since most experts now don't consider Gleason 6 to be a true cancer, so did i test positive in 2 cores or 4? The results of Oncotype came back and it was a bad report. 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. 4.5 year journey (18 months post proton beam), 4.5 Year Update (18 month post Proton Beam). mail@prostateoncology.com, 7 Tips for Seeking Second Opinions For Men with Prostate Cancer. My urologist has decided we'll go ahead with the MRI due to the continued elevated PSA scores, in addition to the overall PHI score. I guess TWO national centers of excellence are better than one? -------------------------------------------------------- It is OK to be overwhelmed with info. National Library of Medicine Youve just been diagnosed with prostate cancer. Many thanks for that. G. Prostate, lesion #1, core biopsy: 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. I didn't study for the test and it's possible some morning activities might have affected my test score :) We experienced information overload and decision/analysis paralysis. feel the clock ticking. 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. Possible additional organ confined malignant lesion in right apex - High grade prostatic intraepithelial neoplasia (HGPIN) My long-term prognosis appears to be good with minimal side effects. Knowing your stage and information specific to that stage makes you more medically sophisticated and enables you to navigate through the potential biases of surgeons and radiation therapists. I am 58 and in very good health otherwise. The Johns Hopkins Brady Urological Institute is known around the world for its expertise in diagnosing and treating urologic conditions. 1st opinion"PYL PSMA PET/CT scan demonstrating foci of moderate to intense uptake in the prostate gland consistent with known prostatic cancer. Bookshelf No extraprostatic extension. Last year, Epstein's lab reviewed the pathology reports of 30,000 cases in which patients requested second opinions. Second opinions apply to biopsies and imaging as well. Many researchers believe PTEN present is a strong brake on Breast Cancer: When to Get a Second Opinion - WebMD The Stanford Medicine Online Second Opinion program offers you easy access to our world-class doctors. I am an airline pilot with exposure to radiation, jet fuels/fumes, etc. Dr. Nour - Emory in Atlanta. I am already positively surprised that I am still alive 4.5 years after my diagnosis. I've tried to find out about Dr. Wong but there's very little info on him. EDI am now 52 and not quite functioning like I did 4+ years ago. I appreciate all the input because I am a little overwhelmed and confused as to the best course of treatment. For men with prostate cancer and who live in the United States, there are some highly regarded pathology labs from which you can obtain your second opinion. The Radiation Oncologist knew of Dr Busch (by now in Alpharetta, GA) and spoke highly of him. How long do you have left? In My Opinion? Get A Second Opinion | ZERO Prostate Cancer Surprisingly, while one in nine men will get diagnosed with prostate cancer in their lifetime1, there are very few doctors who specialize exclusively in treating prostate cancer. I am 62 years old. Wondering if any of the "gurus" here want to take a stab at looking at this and see if they agree that it says what I think it says (I will be following up with doctor(s) to get their opinion, and I waive all HIPAA rights by allowing this to be seen). We specialize in minimally invasive treatments for prostate cancer such as: We place a high priority on sparing the nerves and tissue around the prostate whenever possible. That being said, they can be a beneficial member of the treatment team. Other: There is trace ascites in the mesosigmoid. As I said, I am 58, so I would really like to preserve my quality of life for as long as possible, but the genomics report has me concerned. Do second opinions matter in prostate cancer care? - ecancer Send a Consult for Second Opinion | Johns Hopkins Pathology TZ zone more beneficial, but fairly large compared to whole gland and proximity to capsule edge would likely mean treatment would be suggested. Prior to the results, the oncologist said that the literature shows that a 3+4=7 with less than 5% pattern 4 behaves just like a 3+3=6 and basically is an indolent tumor. 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. 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. If I am rested, I find that I am more ready than if I am not. Surgeon wants next PSA in 3 months. Generally, the symptoms can stabilize over time. But if I include the 3+3=6 cores then 4 cores tested positive and that moves me into the basic teal category and no longer a strong candidate for AS. Atrophy Confounding this, I have read that the different genomic tests can disagree with each other, and that Oncotype is usually a more aggressive finding. Symptoms include leaking and discomfort. At the Johns Hopkins Medical Institutions, he is Professor of Pathology, Urology, and Oncology the recipient of the Reinhard Chair of Urological Pathology and Director of Surgical Pathology. 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. 1. Another type of prostate issue is chronic prostatitis, or chronic pelvic pain syndrome. At Another Johns Hopkins Member Hospital: Masks are required inside all of our care facilities, COVID-19 testing locations on Maryland.gov, Prostate Cancer Treatment: What to Know About Active Surveillance. He adds that second opinions also can provide insight into topics like clinical genetics and family risk or issues related to complementary or integrative medicine approaches to manage symptoms. However, just to be safe she schedules me for TRUS biopsy with the Urologist in another 6 weeks. He wants me to begin the ADT around 5/1. A blocked urethra can also damage the kidneys. Before 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. Men often seek second opinions from urologists before they initiate treatment for their newly diagnosed prostate cancer. So, I made an appointment at Emory Proton Center (Atlanta, GA) and got their opinion. MY THOUGHTS AND ANYTHING DOCTOR NOTED: You may also complete an online appointment request form and we'll respond to schedule an appointment. The best protection for cancer patients who are Health Maintenance Organization members is to seek a second opinion even if she or he has to pay for it. I have a history where Foley catheters were unable to be placed going back to 2005 for unknown reasons. At the Breast Cancer Program at the Johns Hopkins Kimmel Cancer Center in Baltimore, MD, a second opinion requires only that you or your doctor send us your pathology slides, key medical records and signed paperwork requesting the opinion. Medical record collection from doctors and hospitals. Johns Hopkins Hospital Prostate Cancer - ProstateProHelp.com Prostate cancer is a slow growing condition. Anyway, would appreciate knowing how to contact Johns Hopkins. Get a Second Opinion What can a second opinion tell me? It also rules out Brachytherapy. A second opinion can help you make an informed, confident decision about your medical care. Dr. said pirad-5 and to prepare for bad news and probably around a Gleason 7 and that he is rarely wrong. Any score above 55 has a greater than 50/50 chance of finding clinically significant cancer. Lesion 2: Right mid anterior transition zone. (I must say that those low numbers concern me a bit.) Epub 2017 Jun 12. PDF Cancer A Second Opinion A Look At Understanding Controlling And Curing During the next 4 weeks I meet with the recommended Radiologist, and the two local surgeons.
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