Have been diagnosed with a serious or rare health condition. In 2006 my PSA was .6. Men often seek second opinions from urologists before they initiate treatment for their newly diagnosed prostate cancer. On the first scan (post FLA) a lesion was identified by the local radiologist that performed the scan, but the FLA radiologist that performed my procedure was over reading and monitoring my care and stated strongly that there was no cancer. 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. 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? The Johns Hopkins Brady Urological Institute is known around the world for its expertise in diagnosing and treating urologic conditions. They did another 3T-MPMRI (Siemens machine) and it showed a faint area, near the margin, and very close to the down stream sphincter of prostate. Immediate means 6 weeks just to see his NP. Peripheral Zone: The peripheral zone is of normal homogeneous prolonged T2 and there are no suspicious focal areas of 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. Good Luck and God Bless everyone. In adjusted models, obtaining a second opinion was not associated with receipt of definitive treatment . Seminal vesicles are normal. Benign Processes: Overall, obtaining second opinions was not associated with definitive treatment or perceived quality of cancer care. Unfortunately, the 12/20/20 PSA reading was higher and that led to an MRI on 2/2/21 when two lesions were discovered. 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%). Not all cancers are the same and not all treatment plans are absolutely clear. Every year I got a PSA and DRE during my annual physical. We are vaccinating all eligible patients. In some situations, insurers will even insist on a second opinion. Second Opinions - Bladder Cancer | Johns Hopkins Pathology And just this week, 1 YEAR post treatment, it is .46. 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. Benign Processes: This is why the prostate is important to the body. I've tried to find out about Dr. Wong but there's very little info on him. Consult Fees In some cases, additional testing may be required. The more often a doctor diagnoses and treats prostate cancer the more proficient they become. I question the potential EPE and he said it didn't matter, but went ahead and ordered Oncotype. Get a Second Opinion What can a second opinion tell me? 5/10 PSA 4.2/fPSA 9% taken at MSKCC (lab #3) 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. I've also read that some study's have shown that intraductal may be resistant to hormonal therapy, radiation and/or chemo. 4.5 year journey (18 months post proton beam), 4.5 Year Update (18 month post Proton Beam). Over 80,000 specimen cases are seen at Johns Hopkins each year. 2. You're also at greater risk of prostate cancer forming before age 50. 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: After all, it seems like good idea to deal with your cancer sooner rather than later. 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. MRI June 2017 again at SMIL. There are so many different departments at Hopkins that I don't know the optimal department to contact. ADC: mean 879 / median 839 / st dev 223 Prostate, right lateral base: Prostate, left anterior MRI lesion: Benign Processes: Prostate cancer is a malignant (cancerous) tumor of the prostate, a gland found only in men. Masks are required inside all of our care facilities. The percentage of Gleason grade 4 and/or 5 is 5 % We provide second opinions on the full range of gynecologic cancers: Ovarian Uterine Cervical Vulvar Vaginal Fallopian tube Placental tumors Some peritoneal cancers * PIRADS v2 Score: 5 I luckily found this webpage and I started reading everything I could get my hands on. * Seminal vesicle invasion: None. PREVIOUS MRI RESULTS (LOTS of them) The researchers did not include more minor errors in rating how fast-growing and how advanced a cancer was. There are also many reasons why you may want to seek another opinion during the course of your cancer care. Didn't know if she had the catheter in far enough and not getting any urine through itwondered if she had inflated the balloon enough and wondering if it was the reason that I have developed an abscess. I would love to hear from anyone who has been involved in the Chicago study. There were several areas of interest - but nothing in seminal vesicles, lymph, or bones. 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. Secondary Gleason grade: 3 Anything I am overlooking or need to add to my list of considerations? Johns Hopkins second opinion identified a PI-RADS 4 Mayo Phoenix also reviewed MRI prior to targeted biopsy. Lesion 2: Right mid anterior transition zone. I had been carefully watching as my PSA increased to 3.2 from 3.9 in summer 2010. Got my physical and normal DRE with new Dr. No issues identified. Your email address will not be published. My dad 82 was diagnosed last week with prostate cancer with high PSA 100 and GLEASON: ( 4 + 4 ) = 8 / 1 0 , he had the PET Ga-68 PSMA image Friday and today we found out the result is stage 4 Metastatic lesions in the bone pelvic area. All Gleason 6 (3+3). A patient suffering from an enlargement of the prostate may have pain in his lower abdomen and genitals. But in the spirit of disclosure for those of you with BPH a TURP can complicate a future Radical Prostatectomy (or possibly Cryo) and increase the risk of side effect risks. Time moves fast when dealing with cancer, but Doctors dont. Some men will have a very enlarged prostate, whereas others will have a mild enlargement. Does 3+4 at some point typically evolve into 4+3 and also serve as a trigger point for moving from AS to treatment? 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. But you have to do both. This is the most common urinary tract problem in men under 50, and the third most common in men over 65. A second opinion is part of the education process that is critical for many cancer patients. Mayo's report came back with the same PI-RADS 4 with the wording that it was more conspicuous but unchanged. I met with the radiologist 3/17 and he leans toward an IMRT radiation regimen of 5 or 20 sessions TBD combined with ADT (6-month shot but maybe 4 months was enough). His most-frequently cited first or last authored publications is Pathological and Clinical Findings to Predict Tumor Extent of Nonpalpable Prostate Cancer, published in JAMA, which established the criteria for active surveillance. Also, a second opinion provides the opportunity to get information from someone other than the physician who will be directing treatment, which is usually the main source of information for most patients. By Dec 2019, my PSA reached 4.13. If I am rested, I find that I am more ready than if I am not. 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. I'd like to talk with former patients who have gone through the procedure. For these reasons and others, it is advantageous to seek more than one opinion about how your cancer can be treated. Include Your Primary Care Physician as Member of Your Treatment Team. The Stanford Medicine Online Second Opinion program offers you easy access to our world-class doctors. Prostate, left medial base: We used multivariable logistic regression models to evaluate the relationship between second opinions and definitive prostate cancer treatment and perceived quality of care. Two 1cc tumors, gleason score 3+4 each, one in each lobe. 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. 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. I trust the second opinion Dr. Bush gave. * Gleason Score: 3+3 (2 of 6 specimens) The symptoms of acute bacterial prostatitis are similar to those of CPPS. We surveyed men who were diagnosed with localized prostate cancer in the greater Philadelphia area from 2012 to 2014. So, Radiation Oncologist prescribed Cialis 5mg, daily. Men with a college education or beyond also were more likely to cite wanting more information about their cancer as a motivation for a second opinion . My first PSA was 8.03. Overall PIRADS Score: 5/5 present in bladder. If the enlarged prostate is not completely removed, it will shrink. 180 days after treatment PSA was .50. Receiving a second opinion was not associated with perceived quality of prostate cancer care. Had my PSA remained static I'd have remained on AS and had I grown a Target Lesion I'd have sought focal treatment.This science is emerging and only getting better. A doctor at MSK can collaborate with another doctor to offer support and help ensure the best outcomes. Of course, my old school Urologist recommended surgeryHe, of course, knew the best robotic surgeons around.Anyway. Sometimes, you may find out about treatment options you didnt know were available. My profession for forty years was health actuary consultant, so I have a pretty fair understanding of health data, outcomes, and risks. An acute bacterial infection can cause a burning sensation. 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. If anyone has used him, please let me know what your experience was like. Then about a month later I started 28 fractions of Proton Radiation.It was painless. This fee includes: Recommended Reading: Radiation Therapy For Prostate Cancer. Asking for your comments: Prostate Cancer | Johns Hopkins Brady Urological Institute Epub 2018 Mar 28. Little is known about men with localized prostate cancer who seek second opinions, the reasons why, and the association with treatment and quality of care. However, a new study by researchers at the Johns Hopkins University has found that second opinions did not change treatment choice or the persons perception of the quality of care they receive, at least among low-risk men. Intensity: min 148 / Max 459 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. Cleveland Clinics Virtual Second Opinions program connects you to an expert physician who specializes in your specific health needs. This suggests that for some men, second opinions offer a way to pursue the treatment they already planned on, rather than to explore other treatment options, according to study authors Dr. Archana Radhakrishnan, of Johns Hopkins University in Baltimore, and her colleagues. The prostates function is to create some of the fluid that insulates sperm cells found in semen. Symptoms include leaking and discomfort. 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. This may cause a conflict of interest between the patient and the HMO, especially if very expensive treatment is only available outside the HMO system. Based on this forum, Im very lucky for this outcome. The biopsy disclosed I had some abnormal cells resembling cancer known as PINS, short for prostatic intraepithelial neoplasia. Second opinion Johns Hopkins? - Prostate cancer Second opinions offer different things in different circumstances, Dr. Matasar says. After applying exclusion criteria, the final analytic cohort included 2365 respondents. 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 say bullshit to them. Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. -------------------------------------------------------- Interesting differences: I didn't study for the test and it's possible some morning activities might have affected my test score :) Second Opinions (Adults) For stem cell transplant, please call 1-773-702-1994. Can it be salvaged or are the risks of cancer too high? Find a doctor at The Johns Hopkins Hospital, Johns Hopkins Bayview Medical Center or Johns Hopkins Community Physicians. Overall my PSA is between 4 and 10. Seek Perspective from a Range of Specialists. 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. * Perineural Invasion also detected How could this compare using only partial slide re-reading? To learn more about how to get a Neuropathology second opinion, please visit our Neuropathology Division second opinions website. Urology. Now Im still ignorant and dont really know a Gleason from a Duck, so when the Dr says your treatment is radiation or surgery Im devastated. The TRUS biopsy is behind me, the second opinion from Johns Hopkins is behind me, and its time for next steps. 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. Another type of prostate issue is chronic prostatitis, or chronic pelvic pain syndrome. Prostate dimensions: 4.1 x 2.8 x 3.4 cm Details are here: A second opinion can help you make an informed, confident decision about your medical care. Pathology reports are subjective. Prostate, left lateral apex: They agreed with the PI-RADS 4. Please enable it to take advantage of the complete set of features! Because every patient is different, there are several ways to approach prostate cancer treatment. However, many insurance and health care companies do pay for such opinions and acknowledge the importance of second opinions. Hopkins states that the one positive core (10% G6) was visualized by the MRI, so I am hoping that this increases our chances of making it through the screening process. Keywords: Receiving a second opinion was not associated with perceived quality of prostate cancer care. 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. I recently sent my Pathology Slides to Dr. Epstein for a Second Review. I was confident I was making the right decision. 4/16 3T MRI performed (reports/re-reads below) Medical record collection from doctors and hospitals. A patient suffering from an enlargement of the prostate may have pain in his lower abdomen and genitals. The prostate gland is slightly enlarged secondary to transition zone hyperplasia (25cc total) The total number of cores identified is 3 By seeking second opinions and hearing the benefits and drawbacks of a range of treatment options for your specific stage, you will be more equipped to make educated decisions. 3/5 Bring All Labs/Notes to Each Appointment. They did another 3T-MPMRI (Siemens machine) and it showed a faint area, near the margin, and very close to the down stream sphincter of prostate. While the size of an enlarged prostate will influence the extent of urinary symptoms, men may experience a range of urinary symptoms. And, even working in a fairly technical field myself, I was amazed at the technology and precision of that Proton Machine. PSA was 3.0 in 2011 and rose to 6.0 in late 2013. Compared with other men, African-American men and men with a family history of the disease are at higher risk of developing prostate cancer. Men often seek second opinions from urologists before they initiate treatment for their newly diagnosed prostate cancer. * Extracapsular extension: None. Benign Processes: Got the fiducials placed, the Space-OAR gel placed, mold made, and had the pre-treatment MRI and CT Scan. They hesitated calling it a TARGET LESION, but scored it PIRADS 4. I also changed my diet to plant based food, started juicing, and started taking supplements (think Turmeric, Green Tea, etc.). * PIRADS v2 Score: 3 Which Patients Report That Their Urologists Advised Them to Forgo Initial Treatment for Prostate Cancer? EDI am now 52 and not quite functioning like I did 4+ years ago. Generally, the symptoms can stabilize over time. And again, most of you tell me time is on my side, so I am comforted in hearing that. I assume the data on gleason scoring is much more robust/reliable than genomics as it has been around longer and used more extensively. If you choose to be treated at Johns Hopkins, you may be able to begin treatment immediately. Biopsy in 12/27/11 showed 3/14 cores, Gleason 6 with PSA of 4.5. * Other 12 slides not sent They replied they are sending the slides but they said they're looking into the DX test and will get back to me once they have that information. - High grade prostatic intraepithelial neoplasia (HGPIN) Discover what's to love about Charm City for yourself. 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. I was confident I was making the right decision. In other words, can I have a team here in Wisconsin yet travel elsewhere to get my MRI? It worked great (with negative pathology of the tissue) and fixed a lot of nasty symptoms and risks. Many health insurance companies will pay for a second opinion, especially if it is for a medically necessary treatment. The site is secure. 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. Seminal vesicles are normal. 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. 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. 1. Pathology Second Opinion-J.Epstein,M.D. Pathologist-Johns Hopkins Second opinions apply to biopsies and imaging as well. Associated fees may be incurred up to $1,800 in a minority of more complicated cases requiring special studies. ---------------------------------------------------------- First 6 week PSA is undetectable. poorly defined margins and intermediate to low T2. Four weeks after a radical prostatectomy for prostate cancer, he was back in the pool. The Radiation Oncologist said he would be comfortable waiting a little more, but he wasn't confident that I'd grow a target lesion, nor would I be able to wait years before having to do "something." Do I need a third opinion? Reasons for obtaining a second opinion from urologists. How long do you have left? Slightly One of the problems with second opinions is that insurers may not cover the expense. I can do radiation as a monotherapy. The all-inclusive cost for a virtual second opinion for patients in the U.S. is $1,850. About 60% of prostate cancers occur in people older than 65. She put me in the hospital. 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. Surgery seems like overkill for me with too many risks for incontinence and permanent ED, am I overlooking something? Ask us questions on this webpage. It will be interesting to see, I think. 1. 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 . An accurate diagnosis is essential to ensure the most effective treatment. 5: Prostate, left medial apex Our gynecologic pathology team can also help determine if the tumor is localized or has metastasized from another region of the body. He said that it will improve in the future due to future improvements in the treatments. There are lots of lessons learned on the forum. Doctors are skilled at pitching the treatment they specialize in. 2. We experienced information overload and decision/analysis paralysis. Further, the two tumors in question have not really changed much in size for more than 2 years. I have seen numerous urologist for their opinion and all of them want to cut and radiate and give me hormones. LESION 2 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. The review process normally takes several days, after which we will send your slides and other materials are returned. However, seeing him will be another 8 weeks, but he wants my biopsy slides (second opinion) before we meet. (TZ) One suspicious area - lesion size: 2cm x 1.4 cm 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. MRI RE-READ #2 (VERY VERY well respected radiologist): 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. Second opinions not likely to change prostate cancer treatment 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. Second opinions from urologists for prostate cancer: who gets them, why, and their link to treatment . - DCE = (+) In the mean time my PSA was movingno longer static, but never back up to 6. I have developed an "abscess" on my prostate. 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. * 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! Benign prostatic tissue An increase of 1.1 in 3 months is not good news. Symptoms include leaking and discomfort. Confounding this, I have read that the different genomic tests can disagree with each other, and that Oncotype is usually a more aggressive finding. It got discussions started and questions answered. Prostate Cancer: Symptoms, Causes & Treatment - Cleveland Clinic "We were surprised by the relatively large percentage of men who obtain second opinions for their prostate cancer," said lead author Dr. Archana Radhakrishnan of Johns Hopkins University in . Does that mean my Gleason Score based on my biopsy would be less than a Gleason 6? A second opinion is a review of the cancer diagnosis and the treatment recommendations of the physician who is treating the cancer by another, independent physician. No extraprostatic extension. A week later had catheter removed and had no bladder leakage problems. Second opinion on biopsy slides - malecare.org Surabhi Dangi-Garimella, PhD. Centro Diagnostico Italiano , Milan, Italy, Manfred Dietel, M.D.Institute of Pathology Charit, Humboldt University of Medicine, Berlin, Germany, Jonathan I. Epstein, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Robert J. Kurman, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Elizabeth Montgomery, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Manuel Sobrinho-Simes, M.D.University of Porto, Porto, Portugal, Ronald S. Weinstein, M.D.University of Arizona, Tuscon, AZ, Franco VisinoniMilestone Medical Technologies, Bergamo, Italy, Also Check: How Old Can You Be To Get Prostate Cancer. SMIL radiologist reported nothing found. PROSTATE PROS Episode 6: Breakthroughs in Radiation PROSTATE ONCOLOGY SPECIALISTS, Like Man, Im Tired (Of Waiting): The How-to Guide for Men with Prostate Cancer PROSTATE ONCOLOGY SPECIALISTS, Considering Prostate Cancer Clinical Trials? Dr. Nour - Emory in Atlanta. In order to give treatment for each patient with utmost security we would like to announce that currently there will be no visitors allowed.Please note that only one attendant per in-patients is permitted. I'm turning 58 in one week. 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. DIAGNOSIS: 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. 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. Luckily, his report co-coincided with the original QDx report. of tumor in the rectal prostatic angles. Should You Exercise When Youre Expecting? The percentage of tissue with carcinoma is 45% 2019 Jan;69(1):7-34. doi: 10.3322/caac.21551. MRI RE-READ #3 (National Cancer Center of Excellence): 8600 Rockville Pike At this point, I am convinced I made the right treatment choiceOHFOR THOSE THAT DON'T KNOW, THE VA HAS MADE REPRODUCTIVE CANCERS A PRESUMPTIVE CONDITION FOR THOSE THAT SERVED IN MOST OF THE WAR ON TERROR LOCATIONS.Good luck fellas and my prayers are with all of you having to contend with this disease. Lesion 1: Left mid-base transition zone. Would you like email updates of new search results? A blocked urethra can also damage the kidneys. Benign Processes: Want confirmation about a diagnosis or treatment. As a result, patients struggle to differentiate bias from fact. Two things you learn here is get a second opinion from Johns Hopkins on biopsy and get treated at Center of Excellence.