When first diagnosed with prostate cancer, your PCP will generally refer you to a urologist for a biopsy. It worked great (with negative pathology of the tissue) and fixed a lot of nasty symptoms and risks. I frequently make a 2 hour car ride and I have to stop about 25% of the time and when I don't, the urgency is a bit more evident and with the urgency come some hesitancy, but not terrible. So, I believe I made the right choice. 2018 May;115:133-138. doi: 10.1016/j.urology.2018.01.048. - One separate small tissue fragment with prostatic adenocarcinoma, 0.5 mm in linear length Our collaborative processes also extend to our colleagues at Johns Hopkins Medicine, a world-wide leader in cancer research. Utilize your primary care physicians as an un-biased resource to help you get second opinions from a range of specialists. At Johns Hopkins, you can feel confident knowing our multidisciplinary cancer clinics combine the very best resources and specialists all within in a single location for a highly coordinated experience that delivers exceptional care while conserving time, money and energy. 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. The main purpose of the prostate is to produce semen, a milky fluid that sperm swims in. 8600 Rockville Pike Keywords: Only took Motrin and Tylenol for pain after release. A blocked urethra can also damage the kidneys. I'd like to talk with former patients who have gone through the procedure. Spent the night in hospital with very little pain after the first couple of hrs. Your current doctor will frequently suggest a second opinion, if only to confirm the recommended course of action. Background: 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. However, older men 75 years were the least likely to report obtaining a second opinion due to dissatisfaction with their initial urologist. For cancers that are less common, second opinions can offer more treatment options. 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. Has anyone sent Radiology (mpMRI) reports and images to Hopkins for Second Opinion Review? 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%). * He said probably not candidate for watchful waiting because of tumor volume shown and seen on MRI. Benign Processes: Am I wrong? FAX 310-574-4002 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. There are lots of lessons learned on the forum. Prostate cancer is a malignant (cancerous) tumor of the prostate, a gland found only in men. The results of the MRI said they found a PYRAD 5 lesion, but did not find any cancer outside prostate. 3 months has passed, and its time for a PSA and a plan to have an MRI. I am also doing a vegan diet with additional complementary substances. They seem to think it'll do the trick.I feel great and I am glad I chose this treatment path. You may also complete an online appointment request form and we'll respond to schedule an appointment. Just had my appointment today and they are pleased with the results, so far. Be well. We will give that a shot and see how it turns out. The biopsy took 3 samples from the targeted region plus 16 sextant. not hear all the viable treatment options or receive the most up to date This Dr is in charge of active surveillance program at JH so I knew that he wouldnt recommend surgery unless it was really needed. My questions are: I will say, the people I dealt with at Johns Hopkins were extremely nice and professional. 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. Seminal vesicles and other margins are negative for tumor. Have been told a health condition is not treatable. Nov 7, 2016. Any input on this would really be appreciated. I made the appointments. I am already positively surprised that I am still alive 4.5 years after my diagnosis. BONES: No suspicious osseous All Gleason 6 (3+3). It is OK to not understand all the terminology. Reasons for obtaining a second opinion from urologists. 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. 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. Two weeks later I meet with my Johns Hopkins Dr. 2011 Feb;29(1):3-9. doi: 10.1007/s00345-010-0602-y. Anyone with insight into this and advice? 6 cancers that are the toughest to diagnose are prostate, bladder, head and neck, soft tissue, skin and lymph system. You An increase of 1.1 in 3 months is not good news. Most people believe that pathology reports are always correct, accurate and that what the report says is carved in stone. And it is OK to have paralysis by over-analysis. You May Like: Best Treatment For Intermediate Prostate Cancer. I guess TWO national centers of excellence are better than one? 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. Best wishes to all those whose concerns for the day are far more serious than mine. The survey asked the men if they had opted for a second opinion from a urologist following their diagnosis of prostate cancer, and the reasons for the second opinion. This sounds to me like they're not familiar with the Oncotype DX test and makes me wonder how common is the test. Two 1cc tumors, gleason score 3+4 each, one in each lobe. Are there urologists out there that don't routinely order the DX test to get a better idea of low and intermediate risk cancers? 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%). __________________________________________________________________________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. Primary Gleason grade: 3 Numerous publications show the clinical and economic benefits of obtaining a second opinion for Pathology specimens. Results: Every year I got a PSA and DRE during my annual physical. Have been diagnosed with a serious or rare health condition. I am meeting with a multidisciplinary team of docs on March 18 at St. Joe's in Atlanta. Nor did I have any idea that the 1 core had 20% involvement and <5% pattern 4 involvement. No two cases of prostate cancer are alike and an accurate diagnosisis critical to developing the best treatment plan. Treatment options include immunotherapy, JAMA Netw Open. 4/16 3T MRI performed (reports/re-reads below) You know - urinary incontence, erectile dsyfunction, and exhaustion (hormones) are not my cup of tea. Unable to load your collection due to an error, Unable to load your delegates due to an error. 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. Overall, obtaining second opinions was not associated with definitive treatment or perceived quality of cancer care. Visit and Like ZERO - The End of Prostate Cancer on Facebook, Sign up to receive emails and news from ZERO - The End of Prostate Cancer, Search prostate cancer clinical trials and studies. Dont Miss: New Treatments For Stage 4 Prostate Cancer. What is NOT OK is quitting or avoiding the bad news, or handing the entire decision over to someone else.Good luck fellas! Prostate Cancer Pathology in 2021 | Jonathan Epstein, MD | PCRI 2021 Conference, Why Prostate Cancer Survivor John Shearron Thinks Its Important To Do Your Research | PCRI, John Hopkins Prostate Cancer Second Opinion, a higher risk of developing uterine cancer, surgery may not always be necessary for all breast cancer patients, The cancer vanished in every single participant, Long Term Side Effects Of Brachytherapy For Prostate Cancer, treat rare and complex conditions through breakthrough fetal procedures, Prostate Cancer External Beam Radiation Side Effects, Can Enlarged Prostate Cause Blood Clots In Urine, Life Expectancy Stage 4 Prostate Cancer No Treatment, Prostate Cancer Spread To Skull Prognosis, Diagnostic Procedures For Prostate Cancer. If I am rested, I find that I am more ready than if I am not. Assessment categories for this lesion: Ask us questions on this webpage. Overall, obtaining second opinions was not associated with changes in treatment choice or with improvements in how patients viewed their quality of cancer care. Men have plenty of time to seek multiple opinions and thoroughly research each option before making a decision. You can find out by reviewing your plan or by reaching out to your insurance company. This fee includes: Studies show the clinical and financial benefits of obtaining a pathology second opinion. However, learning more about prostate cancer and prostate-related health issues can help optimize health. Also, their protocol would be another biopsy, but he was comfortable with the image and velocity of PSA that he didn't have to have one to start treatmentand I was pretty hesitant (given the image and PSA) to take ADT, and didn't see a biopsy changing my mind regarding treatment and/or ADT.Oh. One of the bits of advice the group regularly dispenses is for men to get a second and even a third opinion if you have doubts about the first opinions rendered by your urologist, or your pathologist, or your radiologist, its always okay to seek out a second opinion. 6 A study at the Johns Hopkins Health System found it was 3.4 times more common in Black Americans than in White Americans. Allow yourself the time to seek multiple opinions. Brachytherapy Experience with Dr. Albert Chang at UCLA? Cancer patients are encouraged to obtain second opinions before starting treatment. Benign fibromuscular stroma; no prostatic glands are identified Are considering a treatment that involves significant risks, such as surgery. But was able to walk right into the JH Urology clinic for immediate treatment (flushing of bladder cleared everything up). In adjusted analyses, however, only age and education were significantly associated with obtaining second opinions from urologists. 2015 Feb;115(2):188-97. doi: 10.1111/bju.12665. G. Prostate, lesion #1, core biopsy: 1st opinion"Nonspecific sclerotic change of the right pubic bone with low-level radiotracer activity, favor degenerative change rather than osseous metastasis." 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. Thanks, 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. Had a little complication a day after release, excessive blood/clots in urine. fibromuscular stroma, anterior prostatic contour is smooth. It is best to begin by talking with the doctor who made your initial prostate cancer diagnosis. FOIA 1. Dr. Jonathan Epstein of Johns Hopkins University Hospital. Other labs for second . I did ask some questions about the study, if anyone is interested. 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. 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. 3. I suggest for all that hear, "you have cancer" that you seek more opinions! Im also wondering why no one has scheduled me for MRI to see what biopsy missed. Now the oncologist wants to perform a PSMA Pet Scan. First MRI done in June 2016 by Scottsdale Medical Imaging - nothing found. For these reasons and others, it is advantageous to seek more than one opinion about how your cancer can be treated. I have a history where Foley catheters were unable to be placed going back to 2005 for unknown reasons. 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. Keep in mind that not all PCPs are knowledgeable about prostate cancer or know the skill levels of all the specialists in the field. 2017 Oct;22(10):1197-1211. doi: 10.1634/theoncologist.2016-0429. Greatest dimension 0.7cm . Getting a second opinion can sometimes lead to a complete change in diagnosis in non-cancerous growths, inflammatory disorders, infections, cancer and other conditions. Estimated prostate volume of 35 cc with an estimated PSA density of 0.11 ng/mL/cc. 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. I am 65 and in excellent general health. Blessings. The all-inclusive cost for a virtual second opinion for patients in the U.S. is $1,850. I can do radiation as a monotherapy. Y'all are in my prayers! 1st opinion. I am also talking with Dr Nour and Dr. Walser and possibly others to see if I am a good candidate for Focal Laser Ablation. 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 was confident I was making the right decision. Benign prostatic tissue )I contacted Dr Busch (still in Chattanooga at the time) and he called me directly to talk me off the ledge. 2. Good Morning Brothers- According to the study, one in every 600 diagnoses showed mistakes.This study only addressed major changes in diagnoses, such as a diagnosis of cancer being reversed to no cancer, says Johns Hopkins pathologist George Netto, M.D. At a rectal exam 6/20 the urologist told me my prostate felt normal, not enlarged, nor did he feel any tumors. Mohamad Allaf, M.D., answers questions about prostate cancer diagnosis and treatment options and discusses robotic prostatectomy at Johns Hopkins. Dont Miss: Bladder Control After Prostate Surgery. He turned to the Top Gun of Prostate Pathology: Jonathan Epstein, MD, the guru of Gleason scoring at Johns Hopkins University in Baltimore. You think your doctor is underestimating how serious your cancer is. I am at that critical juncture in which I at least need to formalize a plan, select a doctor/facility to work with, and continue my testing to make sure I have what I think I have. Primary Gleason grade: 3 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. 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. 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. It is OK to be scared. Would it be rational to stay on AS until biopsy results show a higher volume of PCa for sampled cores (i.e. A doctor at MSK can collaborate with another doctor to offer support and help ensure the best outcomes. The study included nearly 2,400 men in the Philadelphia area recently diagnosed with localized prostate cancer. 5. Inflammation of the prostate can affect the bladder and result in discomfort and other symptoms. Just took time off and then life happened.Thanks in advance for the insights. Prostate, right anterior MRI lesion: Suspicion for malignancy left anterior base-to-apex transition zone; * Adjacent organ invasion: None. 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. Overall, obtaining second opinions was not associated with definitive treatment or perceived quality of cancer care. Second opinions offer different things in different circumstances, Dr. Matasar says. You're more likely to develop prostate cancers that are more likely to spread. 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 the pathologist suggested a second opinion. Unauthorized use of these marks is strictly prohibited. - Prostatic adenocarcinoma, Gleason score 3+4=7 (grade group 2, pattern 4: 10%) involving 2 of 2 cores (medial core: 0.5 mm, 4%; lateral core: 1.5 mm, 10%), 1 mm to the blue inked tissue edge (the closer) If you are diagnosed with a urologic cancer, including but not limited to the prostate, bladder, kidney, and testicular or urinary tract, its important to consider a second opinion. Secondary Gleason grade: 4 Explore our state-of-the-art patient care facilities in the Sheikh Zayed Tower. My most recent biopsy resulted in two cores with Gleason 4+3=7 and one with 3+3=6. Conflicting Prostate Biopsy OpinionsWhat to Do? Jonathan Epstein, M.D. Unbelievable that this happened!!! Note respondents were able to choose more than one reason. A doctor may prescribe surgery or perform an endoscopic procedure. Thanks to all of you for sharing! 2020 Jul 21;19(1):112. doi: 10.1186/s12904-020-00619-9. Whether you want expert confirmation, lack understanding or confidence in your treatment plan, have a rare or unusual type of cancer, your cancer isnt responding to current treatment its reassuring to know that you have options through a second opinion. I am 62 years old. Question anemia. Thanks for Everyone's Help, One of the problems with second opinions is that insurers may not cover the expense. Anyway, I'm reaching out to this group to see if anyone would be willing to chat with me about their brachytherapy experience at UCLA (even to talk me out of it). of tumor in the rectal prostatic angles. Consultation with your nurse care manager. They agreed with the PI-RADS 4. Prostate, right lateral apex: In some situations, insurers will even insist on a second opinion. 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! I tried to send the samples out for genetic testing to Prolaris and Decipher, but there was an ordering error and they never went thru. Asking about other experience with conflicting Prostate Biopsy Opinions. Even for men with faster growing, more aggressive prostate cancer, taking the time to seek a second opinion should be a priority. Learn MoreFor more information about pathology second opinions, visit pathology.jhu.edu or call 877-546-1872. Prostate cancer is a slow growing condition. 2017 May-Jun;30(3):298-307. doi: 10.3122/jabfm.2017.03.160359. It was easy. doi: 10.1001/jamanetworkopen.2020.28320. After sending off all of our records, CD of MRI and path reports, my husband is booked for screening in December. Seems like a simple request. Have a condition that isnt improving or is getting worse, despite treatment. Recovery from Prostate Cancer | Bills Story. 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. Peripheral Zone: The peripheral zone is of normal homogeneous prolonged T2 and there are no suspicious focal areas of Also Check: Prostate Cancer Stage 7 Treatment. Brief MRI history. It was easy. I also changed my diet to plant based food, started juicing, and started taking supplements (think Turmeric, Green Tea, etc.). This has raised some questions on all the scans so far. You're also at greater risk of prostate cancer forming before age 50. So, I made an appointment at Emory Proton Center (Atlanta, GA) and got their opinion. But I've had trouble getting Dr. Chang's office to provide any patient referrals. In 2006 my PSA was .6. The results were ambiguous. It is still important to do your own research. I had a follow up 3T MRI guided biopsy on March 18 at Emory. We experienced information overload and decision/analysis paralysis. Symptoms include leaking and discomfort. The results of Oncotype came back and it was a bad report. After a little experimenting I have been able to achieve a partial erection. Seek Perspective from a Range of Specialists. 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 . Adenocarcinoma: Their opinions are widely held to be definitive. - Benign prostatic tissue If you are considering undergoing a specialized treatment, such as cancer surgery, within your HMO, it is important to inquire about the number of such procedures performed each year by the HMO and the results. Urologists at the Johns Hopkins Brady Urological Institute can make the difficult process of deciding on a treatment plan easier. I have seen numerous urologist for their opinion and all of them want to cut and radiate and give me hormones. 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. That said, I have some questions that I derived, keeping in mind that 99% of what I have learned since February has come directly from this group: Second Opinion Results, Johns Hopkins biopsy reading of 2 slides sent by Sloan: Targeted MR/Fusion biopsy of one 4x8 mm lesion on Right side showed 3+3 in 2 of 5 cores (20% of total volume), and random Right side: 1 core 3+4 (10%, 20% on second opinion from Johns Hopkins) and 1 core 3+3 (10% volume) ; Left Side 1 core 3+3 (10%, no PCa on second opinion from Johns Hopkins). It hasn't let me down. There is no extraprostatic extension. The total number of cores identified is 3 3T MRI with coil is done initially, along with a TRUS biopsy. desired outcome. I have had a second opinion from Johns Hopkins that confirmed the initial pathology of gleason 3+4. We are vaccinating all eligible patients. Keeping a timeline and organized medical records is important because it can contribute to your treatment plan. Thank you, After more than three years on active surveillance, I've pretty much decided to have focal brachytherapy for my prostate cancer. I have selected Focal Laser Ablation as my future (soon) treatment. Transition Zone: In the left base, mid and apical transition zone there is a large mass measuring 2 cm in size which has - T2 = 3/5 It may be a new cancer, but it is more likely a recurrence since it is really near the ablation zone. prostate cancer; quality of health care; second opinion; specialists; treatment. 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. You're at greater risk if you're Black or of African ancestry. Intensity: min 148 / Max 459 He turned to the Top Gun of Prostate Pathology: Jonathan Epstein, MD, the guru of Gleason scoring at Johns Hopkins University in Baltimore. Even at the age of 48, he thought I would be a good candidate for AS. If I don't meter fluids before bed, I can expect to get up 3-4 times in the night. focal peripheral zone lesions. With The Clinic by Cleveland Clinic, patients have access to Cleveland Clinics 3,500 specialists with extensive experience in all types of cancers. Laparoscopic prostatectomy: The prostate is removed with a miniature telescopic instrument, which allows for a quicker recovery, Robotic surgery: This breakthrough technology, which often is used for prostatectomy surgery, requires only a few small incisions. Does this also include HIFU, Cryoablation? Immediate means 6 weeks just to see his NP. * IF ANYONE reading this doesn't believe in the value of MRI first and targeted biopsy next then take note that my systematic biopsy cores showed 0 positive in 8 cores and my MRI guided core samples were 6 for 6 being positive! Some of the more common treatments that you and your doctor may discuss include: Prostate cancer experts at the Brady Urological Institute have created tools that help patients and doctors across the world assess risk and make treatment decisions. SO. Different institutions have different levels of experience when it comes to analyzing prostate biopsy samples and interpreting imaging results. poorly defined margins and intermediate to low T2. The review process normally takes several days, after which we will send your slides and other materials are returned. He wants me to begin the ADT around 5/1. 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. Whether you want expert confirmation, lack understanding or confidence in your treatment plan, have a rare or unusual type of cancer, your cancer isnt responding to current treatment its reassuring to know that you have options through a second opinion. I understand that patient privacy is a priority (I'm actually a privacy lawyer), but surely there are patients who would give consent and be happy to talk with a prospective patient about their experiences? In the mean time my PSA was movingno longer static, but never back up to 6. 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. 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.