johns hopkins prostate cancer second opinion

FOIA I really just want the results of their innovative PTEN test. The TRUS biopsy is behind me, the second opinion from Johns Hopkins is behind me, and its time for next steps. The purpose of starting this discussion is to gather peoples thoughts and opinions and actual experiences with Prostate Focal Laser Ablation. 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. Thankfully, prostate cancer is extremely slow growing. 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 profession for forty years was health actuary consultant, so I have a pretty fair understanding of health data, outcomes, and risks. - High grade prostatic intraepithelial neoplasia (HGPIN) 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. Second Opinion Results, Johns Hopkins biopsy reading of 2 slides sent by Sloan: 5. My question is regarding the results of an MRI guided biopsy into a distinct tumor vs. subsequent Oncotype Dx Results. peripheral zone signal intensity on T2-weighted images. 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. 7: Prostate, left lateral apex So, I also sent this MRI result to Johns Hopkins for a second opinion. HMOs usually try to diagnose and treat patients within their system because the more money the HMO spends on second opinions and treatment outside the HMO, the less money there is available for operation costs and profits. It is OK to be scared. One core had 5%, one 20%, and one 40%. They also determined there was extrapostatic extension because there was some fat in the sample that involved the cancer. Ask your doctor for a copy of your complete medical record. For all other cancer appointments, please call: 1-855-702-8222. D. Prostate, left base, core biopsy: I also changed my diet to plant based food, started juicing, and started taking supplements (think Turmeric, Green Tea, etc.). Brief MRI history. I am an airline pilot with exposure to radiation, jet fuels/fumes, etc. The biopsy took 3 samples from the targeted region plus 16 sextant. 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. 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. Bookshelf MRI June 2017 again at SMIL. When first diagnosed with prostate cancer, your PCP will generally refer you to a urologist for a biopsy. FAX 310-574-4002 Every year I got a PSA and DRE during my annual physical. However, seeing him will be another 8 weeks, but he wants my biopsy slides (second opinion) before we meet. Surgery seems like overkill for me with too many risks for incontinence and permanent ED, am I overlooking something? Let me know what everyone thinks if you see anything interesting or of note here or just have some advice. We experienced information overload and decision/analysis paralysis. I had a very bad experience with an incompetent nurse that did a catheter change. - High grade prostatic intraepithelial neoplasia (HGPIN) However, learning more about prostate cancer and prostate-related health issues can help optimize health. 2nd opinionBone Scan:"Mild increased activity is seen in the right symphysis corresponding to the abnormalities on the prior PET/CT examination. I also had my PTEN test by META-MARK ( I don't have much to say about how I was treated by MM, but I won't be using their services again). Other labs for second . Some men will have a very enlarged prostate, whereas others will have a mild enlargement. Many researchers believe PTEN present is a strong brake on It took me awhile but minutes ago received my second opinion from Johns Hopkins. What is NOT OK is quitting or avoiding the bad news, or handing the entire decision over to someone else.Good luck fellas! Find more COVID-19 testing locations on Maryland.gov. 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. PROSTATE ADDITIONAL FINDINGS: Benign prostatic lesion. - DCE = (+) Fear motivates you to want to treat this as soon as possible. Extracapsular extension: The prostatic capsule is preserved. He also stated that he would ONLY recommend FLA if done within a trial. Similarly, among those who received definitive treatment, second opinions were not associated with receiving surgery. The issues in my prostate from the first procedure onward have all been in the same area and the rest of my prostate from the first biopsy and subsequent MRIs onward have never shown any indications of cancer in other areas. Future study is needed to determine when second opinions contribute to increasing the value of cancer care. There is no extraprostatic extension. One Johns Hopkins study showed that out of 14,000 men who had surgery and were found to have Gleason 6 cancer confined to the prostate, "zero of those 14,000 men had lymph node metastases. No extraprostatic extension. Call us with any questions: 410-955-2405, ext. Prostate, right anterior MRI lesion: There are also many reasons why you may want to seek another opinion during the course of your cancer care. And, even working in a fairly technical field myself, I was amazed at the technology and precision of that Proton Machine. Is it done through my doctor or do I do it myself with sending CDs of the MRI? 1. And when I attempt to ask questions about intradcutal, I get responses about how little is known about it because it's so rare or that it is controversial or that they're not familiar with the study I'm referencing. They find that one of my 5-10% Gleason 6 core is actually a 50% Gleason 7(3+4) and the MRI was so cloudy with blood from original biopsy they said they couldnt determine much. An accurate diagnosis is essential to ensure the most effective treatment. Their MRI was more sensitive and found there were actually 2 lesions close together that looked like one on the prior MRIs. Men were asked if they obtained a second opinion from a urologist, and the reasons why. :) Prostatic Adenocarcinoma My mind goes all over the place as to why this is. PSA had increased to 5.4. Surabhi Dangi-Garimella, PhD. Thanks, BigD. AHN patients have unprecedented access to the Johns Hopkins Center for Fetal Therapy. 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. 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. Does 3+4 at some point typically evolve into 4+3 and also serve as a trigger point for moving from AS to treatment? feel the clock ticking. She put me in the hospital. 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. It hasn't let me down. 4. Many men name the diagnosing urologist as their treating doctor and do not seek other opinions. Also, infection was noted, so the current PSA is high in part due to prostatitis. - One separate small tissue fragment with prostatic adenocarcinoma, 0.5 mm in linear length Prostate, left lateral apex: This is the most common urinary tract problem in men under 50, and the third most common in men over 65. 3. The Johns Hopkins University, The Johns Hopkins Hospital, and Johns Hopkins Health System. 1: Prostate, right lateral apex Patient-initiated second medical consultations-patient characteristics and motivating factors, impact on care and satisfaction: a systematic review. If the problem is unresponsive to other treatments, your doctor may suggest a surgical procedure. prostate volume). It is still important to do your own research. IMPRESSION: Even if someone is being seen at a different academic center, the trials and other treatment options that we offer here may be different. NONE of the many radiation oncologists, surgeons or urologists I've spoken with in my journey have ever mentioned the term to me so I had to look it up. The neurovascular bundles are intact. John, I was diagnosed on 11 December, 2013. Therefore, the value of these second opinions remains unknown. 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. 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. 2nd opinion"Sclerotic change at the right pubic bone with max SUV of 1.4." We can help with your case. We had the 3T MRI (no coil) and MRI guided biopsy at Sperling in NY, and then had a 2nd Opinion done by Johns Hopkins. 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 . While the size of an enlarged prostate will influence the extent of urinary symptoms, men may experience a range of urinary symptoms. The results of Oncotype came back and it was a bad report. A blocked urethra can also damage the kidneys. 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. Find more COVID-19 testing locations on Maryland.gov. Just took time off and then life happened.Thanks in advance for the insights. I am 62 years old. A doctor may prescribe surgery or perform an endoscopic procedure. The lesion also shows focal increased permeability. 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. About this time, I started reading this forum and my ignorance starts going away. I have seen numerous urologist for their opinion and all of them want to cut and radiate and give me hormones. The results were ambiguous. 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? The majority had lower risk tumors and clinical staging of 1 40% sought second opinions with about half having more than one reason Men seeking second opinions tended to be younger and better educated citing the need for more information as their reason. According to the doctor it is around 3 mm. I want to insure that the Imaging was read correctly and nothing was overlooked or missed. DIAGNOSIS: Your doctor is not sure what is wrong with you. G. Prostate, lesion #1, core biopsy: 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. The reasons for opting for treatment: the single lesion - previously Gleason 3+4, with a small percentage of pattern 4 - has grown, and according to a biopsy performed March 25, my Gleason 3+4 is now a Gleason 4+3. MY THOUGHTS AND ANYTHING DOCTOR NOTED: 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. PMC asymmetric central zone tissue more pronounced on the left. Good Morning Brothers- 3T MRI with coil is done initially, along with a TRUS biopsy. Urologists at the Johns Hopkins Brady Urological Institute can make the difficult process of deciding on a treatment plan easier. Notice of Privacy Practices(Patients & Health Plan Members). Being in Wisconsin, my insurance gives me the option of two hospitals to manage me. Getting a second opinion from us is easy, convenient, and all done remotely. 1. Unauthorized use of these marks is strictly prohibited. Caused me to bleed heavily. The total number of cores with carcinoma is 3 have no symptoms, and yet you have cancer? The more often a doctor diagnoses and treats prostate cancer the more proficient they become. First of all we would like to emphasize that the health of our employees, our patients and their relatives is our first priority. I had the MRI in April 2021 and it showed a PI-RADS 4 lesion. Benign Processes: Prostate, right medial apex: 4: Prostate, right medial base Your current doctor will frequently suggest a second opinion, if only to confirm the recommended course of action. Hello everyone. Benign fibromuscular stroma; no prostatic glands are identified I say bullshit to them. 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. Do I need a third opinion? All rights reserved. Also indicated everything else was "organ confined." Dr also stated he was able to totally spare one of my nerves, but to get margin may have damaged one. * Adjacent organ invasion: None. I had two no-risk, non-invasive tests: a Free PSA with an adverse score of 9% and a PCA3 test with a disappointing 41. 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'm currently in the process of getting an appointment set up with a Dr. Wang at UCLA. This is a PI-RADS 5 lesion in Radhakrishnan A, Grande D, Mitra N, Bekelman J, Stillson C, Pollack CE. Natural history of progression after PSA elevation following radical The biopsy disclosed I had some abnormal cells resembling cancer known as PINS, short for prostatic intraepithelial neoplasia. Seminal vesicles: The seminal vesicles are normal and symmetrical bilaterally. These results, if validated in other studies, justify additional investigation on how second opinions can contribute to increasing the value of cancer care, the authors concluded. Also, Oncotype subsequently invalidated my results because they found in the history that I had a prior FLA. And again, most of you tell me time is on my side, so I am comforted in hearing that. Johns Hopkins Prostate Cancer Doctors - HealthyProstateClub.com It can: Confirm your original diagnosis and treatment plan Give you more detail about the type of breast cancer you have and stage it's in. John Hopkins Prostate Cancer Second Opinion Had third MRI in July 2019 this time at Mayo which I believe does a better job than SMIL. Assessment categories for this lesion: -------------------------------------------------------- Treatment options include immunotherapy, His second opinion just came back. They seem to think it'll do the trick.I feel great and I am glad I chose this treatment path. Seminal vesicles and other margins are negative for tumor. Value of Second Opinion in Prostate Cancer Uncertain, Says - AJMC Stanford Medicine Online Second Opinion Program MM, Much to my dismay my 4th targeted biopsy Oct 12 revealed 5% G4 (upgraded from Grade Group 1 to 2 (Gleason 3+4 intermediate/favorable). I suggest for all that hear, "you have cancer" that you seek more opinions! We experienced information overload and decision/analysis paralysis. I recently sent my Pathology Slides to Dr. Epstein for a Second Review. No one at Hopkins has ever died of prostate cancer if he had Gleason 3 + 3 cancer." 2016 American Cancer Society. If these do not work, your symptoms could progress and become chronic. That is literally the first time I heard that term other than seeing it in my pathology report. Most people believe that pathology reports are always correct, accurate and that what the report says is carved in stone. Following application of the relevant exclusion criteria, 2365 respondents remained in the analytical cohort. During puberty, the body produces semen in a large number of cases, including enlarged prostate. Ask us questions on this webpage. ADC: mean 879 / median 839 / st dev 223 TRANSPERINEAL MRI GUIDED BIOPSY RESULTS But I've had trouble getting Dr. Chang's office to provide any patient referrals. Methods: Men have plenty of time to seek multiple opinions and thoroughly research each option before making a decision. Dr. Nour - Emory in Atlanta. But I don't want to do a radical prostatectomy or radiation that would have large side effects now if the laser is a viable option given my data set. I have completed all that is necessary to enter Johns Hopkins Second opinion and PTEN test program. 30%/40% or higher)? Y'all are in my prayers! It is not uncommon that two different pathologists looking at the same slide come to a different interpretation and opinion about what is in their microscope! We used multivariable logistic regression models to evaluate the relationship between second opinions and definitive prostate cancer treatment and perceived quality of care. Time moves fast when dealing with cancer, but Doctors dont. 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. very activerun/cycle 6 days a week Any score above 55 has a greater than 50/50 chance of finding clinically significant cancer. - Benign prostatic tissue In some situations, insurers will even insist on a second opinion. The out-of-pocket cost may be in the $300 range (insurance may not cover it), and it is a simple matter to call your urologist to forward the slides to them. 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. Unlike pathology labs in most hospitals, Jonathan Epstein's lab at Johns Hopkins has pathologists who specialize in reading prostate tissue samples. Further, among men with low risk disease, we did not observe a significant association between second opinions and receipt of definitive treatment or surgery. 2: Prostate, right lateral base Symptoms include leaking and discomfort. T2W MRI score= 2, DW MRI score= 3, DCE MRI score=positive This condition causes pain in the lower back and groin area, and may cause urinary retention. Now its easier than ever to get the answers you need and peace of mind you deserve. doi: 10.1002/cncr.30412. Comments appreciated, Overall PIRADS Score: 5/5 Ask your PCP to refer you to several different types of treating doctors before making a treatment decision. 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. If youve received a new cancer diagnosis or arent seeing results from your current treatment plan, an expert second opinion can help you move forward with confidence. Depending on your location, you may be able to have a telemedicine consultation. I am 65 and in excellent general health. HMOs usually try to diagnose and treat patients within their system because the more money the HMO spends on second opinions and treatment outside the HMO, the less money there is available for operation costs and profits. Lesion 1: Left mid-base transition zone. John. PDF Cancer A Second Opinion A Look At Understanding Controlling And Curing He said that he saw what JHs was referring to but did not determine EPE for a variety of reasons. He basically said it was possible, but that he did not agree. * Both Sloan and Johns Hopkins admit that large discrepancies are unusual, yet both stand by their opinions. Second opinions from urologists for prostate cancer: who gets them, why, and their link to treatment . I wish the VA would be more informative about this disease they owe it to our veterans. Thanks for considering. My understanding is that brachy is great for efficacy with less risk to the bowel and the same risk for incontinence and ED as other forms of radiation. When people recommend going to a Center of Excellence, believe them. They are not objective. I've tried to find out about Dr. Wong but there's very little info on him. * Gleason Score: 4+5, Slide 4 (vs. Sloan's 3+4) Dr. Jonathan Epstein of Johns Hopkins University Hospital. Hope to hear from a bunch of people. Mohamad Allaf, M.D., answers questions about prostate cancer diagnosis and treatment options and discusses robotic prostatectomy at Johns Hopkins. And by FAA Aeromedical Ruling, I'd need a few post procedure reports before being cleared to fly again.)

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