So, I go one better, I call up Johns Hopkins and find a Dr who does DaVinci Prostate Surgery. 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. I've been on AS for two years after my initial TRUS biopsy showed 3 cores 3+3 (10% volume) on Right side, and 2 cores 3+3 on Left side. 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. 5/10 PSA 4.2/fPSA 9% taken at MSKCC (lab #3) ADC: mean 879 / median 839 / st dev 223 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. 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. In addition to providing a better understanding of your diagnosis, a second opinion can also shed new light on treatment options and give you confidence in how to proceed with your care. Get a Second Opinion Find more COVID-19 testing locations on Maryland.gov. My family doctor was alarmed because such a steep increase in prostate-specific antigen could be a sign of prostate cancer. Dr. Jonathan Epstein of Johns Hopkins University Hospital. Prostate Cancer Grading: The primary goal is to be cured with the least toxic, most effective approach. So, I asked the Radiologist if she will schedule one for me. decision on a single medical opinion or the first appointment you get, you may and transmitted securely. The only prescriptions I take are for GERD (Protonix), cholesterol (Atvorstatin), and allopurinol for an episode of gout that I got while doing physical rehab for a bad tibia break (I shattered my tibia plateau 2/2020 and have pretty much recovered). Prostate Cancer Grading: -------------------------------------------------------- There is no bony or bulky nodal disease in the pelvis And just this week, 1 YEAR post treatment, it is .46. 3+4, 4+3, 4+3, 4+5 (1st read)Both docs are recommending surgery.PSMA CT Scan report:"BONES/BONE MARROW: There are sclerotic changes in the right pubic bone adjacent to the symphysis pubis and to lesser extent in the left pubic bone. prostate cancer; quality of health care; second opinion; specialists; treatment. 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. I am unfortunately "officially" joining the club after getting my biopsy results today. 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. BASE DATA: Greetings gentlemen! He also said I would tolerate any option well based on my age and health. Explore our state-of-the-art patient care facilities in the Sheikh Zayed Tower. 3. Get directions, important phone numbers, locations and more. Do any of you have an opinion or actual experience with any of the three listed below? B. Prostate, right mid, core biopsy: doi: 10.1002/cncr.30412. Consultation with your nurse care manager. Metastatic disease considered less likely for this pattern. If a targeted biopsy is planned, this lesion can be sampled at the same time. The James Buchanan Brady Urological Institute, Masks are required inside all of our care facilities, COVID-19 testing locations on Maryland.gov. We prioritized treatment as AS, FLA/TULSA (if a lesion ever presented itself), and Proton Beam Radiation. 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? Getting a Second Opinion The best time to seek a second opinion is before you start treatment. Sought Johns Hopkins second opinion of pathology slides. It hasn't let me down. They basically said it didn't matter. 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. PELVIC LYMPH NODES: No adenopathy. But, ultimately decided on whole gland treatment using Proton Beam Radiation.So. Your doctor is not sure what is wrong with you. ---------------------------------------------------------- I have selected Focal Laser Ablation as my future (soon) treatment. This championship swimmer sought a second opinion at Johns Hopkins. -------------------------------------------------------- Emotional outlook is fragile at times and straight clinical approach of doctors does not help. A patient suffering from an enlargement of the prostate may have pain in his lower abdomen and genitals. I appreciate any comments or insight that anyone wants to share. 7: Prostate, left lateral apex You're more likely to develop prostate cancers that are more likely to spread. Low volume post-void residual urine is present in the bladder. The people were great. Getting a second opinion can sometimes lead to a complete change in diagnosis in non-cancerous growths, inflammatory disorders, infections, cancer and other conditions. Everything seems to be on track to remove the cancer and be cured! Thanks to all of you for sharing! John, I was diagnosed on 11 December, 2013. In adjusted analyses, however, only age and education were significantly associated with obtaining second opinions from urologists. With no travel needed and no red tape, its easy to get a second opinion, all from the comfort of your home. F. Prostate, left apex, core biopsy: After a second opinion from both Johns Hopkins and Stanford, the two 4+3's were downgraded. Doctors are skilled at pitching the treatment they specialize in. 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. Grade Group: 2 Ask us questions on this webpage. You When to move from Active Surveillance to Treatment for Prostate Cancer? No one at Hopkins has ever died of prostate cancer if he had Gleason 3 + 3 cancer." Of these, 40% obtained second opinions, most commonly because they wanted more information about their cancer (50.8%) and wanted to be seen by the best doctor (46.3%). 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. Who should I contact at Johns Hopkins to get a second opinion on a biopsy? I made the appointments. While I now concluded we need to find "it", I researched the best approach to see what is really going on and to do this safely. It would be more convenient to use Mayo but I want the best practitioner regardless. Find more COVID-19 testing locations on Maryland.gov. Patients may experience a fever or chills as a result of the infection. 4. 5. Here are the details: the transition zone. He never sought treatment for the injury. There is hope. Following the advice of all on here, I need a team of doctors to manage my care. And just this week, 1 YEAR post treatment, it is .46. An increase of 1.1 in 3 months is not good news. We can help with your case. Treatment options include immunotherapy, Other Features: When you review your pathology report and are going to be making important decisions, like treatment decisions, which will be based on the information from the pathology report. So I initially thought this makes me a good candidate for AS. This is the most common urinary tract problem in men under 50, and the third most common in men over 65. I wish the VA would be more informative about this disease they owe it to our veterans. In fact, additional biopsies revealed no additional cancer. Epstein, who views about 12,000 slides a year, called for calm in my case and suggested another biopsy in six months. :) No extraprostatic extension. Also indicated everything else was "organ confined." When you get a diagnosis of breast cancer from your doctor, its not uncommon to get a second opinion. Younger men were more likely to cite wanting more information about their cancer and to see the best doctor as the reason to seek a second opinion . 1: Prostate, right lateral apex Thankfully, prostate cancer is extremely slow growing. I'm trying to figure out why the PSA keeps rising. A doctor at MSK can collaborate with another doctor to offer support and help ensure the best outcomes. And by FAA Aeromedical Ruling, I'd need a few post procedure reports before being cleared to fly again.) Thank you for your participation! Original Sloan Biopsy Results: 2nd opinionBone Scan:"Mild increased activity is seen in the right symphysis corresponding to the abnormalities on the prior PET/CT examination. When people recommend going to a Center of Excellence, believe them. Benign prostatic tissue Research was mixed on PINS, but in those days, many doctors saw them as likely to develop into cancer. Generally, the symptoms can stabilize over time. A second opinion is part of the education process that is critical for many cancer patients. My goals are to control PCa, to minimize side effects, and to keep options open in the future. The https:// ensures that you are connecting to the The problem is that all 3 pathologies noted an intraductal component. Keep in mind that not all PCPs are knowledgeable about prostate cancer or know the skill levels of all the specialists in the field. 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. Also, in 2018 I had an exosome Dx test which scored 45.34, but I also retook that test this year and it went down to 30.79. Dont Miss: Screening For Prostate Cancer Icd 10. Radhakrishnan A, Grande D, Ross M, Mitra N, Bekelman J, Stillson C, Pollack CE. Low post-void residual volume is I'd like to talk with former patients who have gone through the procedure. I suggest for all that hear, "you have cancer" that you seek more opinions! The James Buchanan Brady Urological Institute, Masks are required inside all of our care facilities, COVID-19 testing locations on Maryland.gov, Precision Medicine Center of Excellence for Prostate Cancer, robotic-assisted radical laparoscopic prostatectomies, The Brady Urological Institute and the Johns Hopkins Kimmel Cancer Center take a, Our urologic surgeons have extensive experience performing, Our surgeons, oncologists and radiologists are also world leaders in prostate cancer research, giving patients access to the latest discoveries and. My current situation is age 67, no health issues, never had erectile dysfunction or incontinence, 6 tall, 175 lbs, generally fit and active. I am 58 and in very good health otherwise. I really just want the results of their innovative PTEN test. Other labs for second . More medical freakouts. PMC Future study is needed to determine when second opinions contribute to increasing the value of cancer care. * Seminal vesicle invasion: None. * Size: 1.5 cm However, it also is possible to seek a pathology second opinion on your own, and it does not require an in-person office visit. I recently sent my Pathology Slides to Dr. Epstein for a Second Review. After a little experimenting I have been able to achieve a partial erection. Comments appreciated, THANKS! I guess the PET scan will be the next step in what type of treatment options are in store.Has this occurred to anyone else? 5. If these do not work, your symptoms could progress and become chronic. I've tried to find out about Dr. Wong but there's very little info on him. When I read the forums and questions on this site everyone mentions their Gleason Score from their biopsy. Not all cancers are the same and not all treatment plans are absolutely clear. I also changed my diet to plant based food, started juicing, and started taking supplements (think Turmeric, Green Tea, etc.). The PSA Doubling Time parallels my Urologist Doubling Time (I keep changing Uro until I find one who makes sense)! TZ zone more beneficial, but fairly large compared to whole gland and proximity to capsule edge would likely mean treatment would be suggested. However, just to be safe she schedules me for TRUS biopsy with the Urologist in another 6 weeks. Dont Miss: Bladder Control After Prostate Surgery. This site needs JavaScript to work properly. 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. Interesting differences: By choosing the first doctor you speak with to be your treating physician, you may be putting your health in the hands of someone who lacks the expertise to accurately and safely treat your prostate cancer. Extraprostatic extension: negative This fee includes: Studies show the clinical and financial benefits of obtaining a pathology second opinion. Fear motivates you to want to treat this as soon as possible. I was never under the misconception that I'd never have to do something, but I was going to wait until I needed to do something. I'm going to reach out to UCLA to see what they can do. Ask your doctor for a copy of your complete medical record. Include Your Primary Care Physician as Member of Your Treatment Team. 53 years old 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. About this time, I started reading this forum and my ignorance starts going away. Even if I go the radiation route, should I try for Proton radiation or some other type? Many men name the diagnosing urologist as their treating doctor and do not seek other opinions. 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. very activerun/cycle 6 days a week )As for side effectsI occasionally have some urgency/hesitancy having to pee. 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. Y'all are in my prayers! FYI-We are also considering the trial at Princess Margaret Hospital in Toronto. Had a little complication a day after release, excessive blood/clots in urine. 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. Dr stated that after seeing my muscles on the inside during operation he would have predicted this. A small early-stage clinical trial found that a carefully selected group of patients who responded remarkably well to chemotherapy could skip surgery altogether. * Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project 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. 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. I am 65 and in excellent general health. We will give that a shot and see how it turns out. I have seen numerous urologist for their opinion and all of them want to cut and radiate and give me hormones. The ADT has daunting side-effects but he said offers some improved chances of eradication, any long-term downsides that I should consider? Consultation with your nurse care manager. So, I believe I made the right choice. First MRI done in June 2016 by Scottsdale Medical Imaging - nothing found. Note respondents were able to, MeSH 2 of the 12 samples showed High Grade PIN and one area showed "suspicious for low-grade adenocarcinoma". Read Also: What Are The Signs Of Prostate Infection. Want confirmation about a diagnosis or treatment. Johns Hopkins is home to many of the world's leaders in Pathology. Two things you learn here is get a second opinion from Johns Hopkins on biopsy and get treated at Center of Excellence. What have your doctors told you? 2. (Scores above 55 have a greater than 50% chance of finding clinically significant cancer on a biopsy) The biopsy showed 2 or 3 cores containing HG PIN but no cancer. I still have some urgency and frequency issues, but I am not complaining too bad. Our OB-GYNs, maternal-fetal medicine specialists, and pediatricians collaborate regularly with the Johns Hopkins team getting second opinions and access to hundreds of clinical trials. They may defer to the recommendation of the specialist, or refer you to a doctor with limited prostate cancer experience. However, there were no other suspicious areas on MRI. As some of you may know, I am a moderator for a support group for men on active surveillance for low-risk prostate cancer. Results: The results were ambiguous. Brachytherapy Experience with Dr. Albert Chang at UCLA? Many researchers believe PTEN present is a strong brake on doi: 10.1002/cncr.30412. The percentage of tissue with carcinoma is 45% Note respondents were able to choose more than one reason. Unable to load your collection due to an error, Unable to load your delegates due to an error. With The Clinic by Cleveland Clinic, patients have access to Cleveland Clinics 3,500 specialists with extensive experience in all types of cancers. I've had what I would consider a fluctuating PSA since first tested in November 2018. Find more COVID-19 testing locations on Maryland.gov. An accurate diagnosis is essential to ensure the most effective treatment. Of course that was before I found this webpage and I really didn't know what 1 core of 18 samples showing 3+4=7 Gleason meant. MEASUREMENTS: * Membranous urethral length: 1.2 cm -------------------------------------------------------- mail@prostateoncology.com, 7 Tips for Seeking Second Opinions For Men with Prostate Cancer. Benign Processes: Types of questions that pathologists often address in our second opinions: Seminal vesicles are normal. Request an Appointment 410-955-6100 Surgery seems like overkill for me with too many risks for incontinence and permanent ED, am I overlooking something? Shore ND, Karsh L, Gomella LG, Keane TE, Concepcion RS, Crawford ED. To schedule an in-person visit for a second opinion or to determine if a telemedicine consultation is possible, call: In addition to cancer, our urologic team provides second opinions regarding urinary stone disease, urinary tract reconstruction, incontinence, male infertility and sexual health, and many other urologic conditions or procedures. Surgery took about 3 hrs. What are you doing about it? Learn more through his bio: Progress in the field.In recent years, advancements in research have changed the way cancer is treated. 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've been on AS since April 2016. 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. You may be concerned that the cancer will grow rapidly out of control before you are able to get a second opinion. Both Drs and nurses knew what they were doing and had lots of experience. Call us with any questions: 410-955-2405, ext. Reasons for getting a second opinion include: You want to be sure you have explored all options. If you're seeking a second opinion on treatment (see below), the specialist you choose often will be able to order a pathology second opinion for you, through his or her hospital's pathology department.