A blocked urethra can also damage the kidneys. 4: Prostate, right medial base 4. Patient-initiated second medical consultations-patient characteristics and motivating factors, impact on care and satisfaction: a systematic review. Masks are required inside all of our care facilities, COVID-19 testing locations on Maryland.gov, The Sidney Kimmel Comprehensive Cancer Center. Prior to the results, the oncologist said that the literature shows that a 3+4=7 with less than 5% pattern 4 behaves just like a 3+3=6 and basically is an indolent tumor. * Location: Left, anterior, base to apex, transition zone 3. * Should still go for a Johns Hopkins second opinion on the pathology or is that overkill since the first one was done at MSKCC? Only one core was diagnosed with a small amount of 3+3 (it was one of the three targeted cores). They seem to think it'll do the trick.I feel great and I am glad I chose this treatment path. For men with prostate cancer and who live in the United States, there are some highly regarded pathology labs from which you can obtain your second opinion. Assessment categories for this lesion: I was on active surveillance after a FLA procedure done in 2018. The researchers did not include more minor errors in rating how fast-growing and how advanced a cancer was. Men were asked if they obtained a second opinion from a urologist, and the reasons why. This teamwork ensures the best possible patient outcomes. Ask us questions on this webpage. 7. I am also doing a vegan diet with additional complementary substances. I worked out every day. Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. With world-renowned expertise, multidisciplinary specialistsand the latest data, we partner with you tomake informed decisions about managing your prostate cancer. lesion. 180 days after treatment PSA was .50. I am also not comfortable making a decision based upon 1 genomics test, when my other prior test(s) disagrees and the gleason score disagrees. A newly published paper by Fischer et al. 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. -------------------------------------------------------- The percentage of tissue with carcinoma is 70% JHs just said it was minimal less than 5%. Had third MRI in July 2019 this time at Mayo which I believe does a better job than SMIL. Radhakrishnan A, Grande D, Mitra N, Bekelman J, Stillson C, Pollack CE. Notice of Privacy Practices(Patients & Health Plan Members). The ADT has daunting side-effects but he said offers some improved chances of eradication, any long-term downsides that I should consider? Nor did I have any idea that the 1 core had 20% involvement and <5% pattern 4 involvement. 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? Treatment Advice: Sloans radiation oncologist says radiation treatment will likely be the same whichever pathologist report prevails, but may add hormone therapy for about 2 months. Benign prostatic tissue You're also at greater risk of prostate cancer forming before age 50. 2. During puberty, the body produces semen in a large number of cases, including enlarged prostate. The Radiation Oncologist knew of Dr Busch (by now in Alpharetta, GA) and spoke highly of him. Through the AHN Cancer Institute, you benefit from personalized treatment in your community, close to home, from your dedicated care team. Benign Processes: Family history of prostate cancer. There is hope. BJU Int. I was confident I was making the right decision. I have searched the country for intervential radiologist that perform FLA on the prostate. The total number of cores identified is 3 MEASUREMENTS: I'll post the whole thing, my doc and my own comments, and then cut/paste all my MRI results in case anyone REALLY liked data. 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. 7. My other option for treatment is either LDR or HDR brachytherapy. Experts believe that this study is the first in history to have achieved such results. MRI June 2017 again at SMIL. My most recent biopsy resulted in two cores with Gleason 4+3=7 and one with 3+3=6. A small early-stage clinical trial found that a carefully selected group of patients who responded remarkably well to chemotherapy could skip surgery altogether. Even if someone is being seen at a different academic center, the trials and other treatment options that we offer here may be different. I have completed an exhaustive research effort on Prostate Cancer and PCa treatments. Dr. said pirad-5 and to prepare for bad news and probably around a Gleason 7 and that he is rarely wrong. Ask your doctor for a copy of your complete medical record. Has anyone else run into this where the gleason score is favorable, but the genomic (specifically Oncotype) test is not? Medical record collection from doctors and hospitals. MY THOUGHTS AND ANYTHING DOCTOR NOTED: All rights reserved. We can help with your case. Benign fibromuscular stroma; no prostatic glands are identified Read Also: What Are The Signs Of Prostate Infection. But, ultimately decided on whole gland treatment using Proton Beam Radiation.So. The people were great. Spent the night in hospital with very little pain after the first couple of hrs. For these reasons and others, it is advantageous to seek more than one opinion about how your cancer can be treated. * Adjacent organ invasion: None. You Men often seek second opinions from urologists before they initiate treatment for their newly diagnosed prostate cancer. (I must say that those low numbers concern me a bit.) Reason was large volume of cancer (even though most of mine was Gleason 6), presence of Gleason 7 in biopsy and the rapidly increasing PSA. There were several areas of interest - but nothing in seminal vesicles, lymph, or bones. 1. 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. Is there such a thing as having a team that isnt equipped with the best equipment nor the most experienced radiologists? Dr. Epstein has 744 publications in peer-reviewed literature and has authored 50 book chapters with a H-factor of 118. Hi All, Abstract Context: In men who develop an elevated serum prostate-specific antigen level (PSA) after having undergone a radical prostatectomy, the natural history of progression to distant metastases and death due to prostate cancer is unknown. My experience at Johns Hopkins was awesome. 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. Hello, I apologize upfront for the length of this post, but I was recently diagnosed with prostate cancer (T2C) and figure more information is better than not enough. Associated fees may be incurred up to $1,800 in a minority of more complicated cases requiring special studies. Value of Second Opinion in Prostate Cancer Uncertain, Says Hopkins Study. And it is OK to have paralysis by over-analysis. An accurate diagnosis is essential to ensure the most effective treatment. Read books and realize as soon as they are published, they are outdated. Benign fibromuscular stroma; no prostatic glands are identified desired outcome. Using an Ellipsoid Volume the dimensions would give you a volume of 20.44. The main purpose of the prostate is to produce semen, a milky fluid that sperm swims in. These so-called grading and staging errors are more common and can affect how aggressively a patient is treated. 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. A total of 2386 men responded to the survey (adjusted response rate, 51.1%). After a second opinion from both Johns Hopkins and Stanford, the two 4+3's were downgraded. Learn MoreFor more information about pathology second opinions, visit pathology.jhu.edu or call 877-546-1872. I'm 58 yrs old and had a TRUS random biopsy October 2020 after my PSA continually stayed between 4.4 and 8, and PHI score was 126. There are also many reasons why you may want to seek another opinion during the course of your cancer care. The prostates function is to create some of the fluid that insulates sperm cells found in semen. 2. Primary Gleason grade: 3 Request an Appointment 410-955-6100 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. * Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project 53 years old 2nd opinionBone Scan:"Mild increased activity is seen in the right symphysis corresponding to the abnormalities on the prior PET/CT examination. 1. Specimens Submitted: Generally, the symptoms can stabilize over time. Did robotic radical prostatectomy 1/25/12. 5: Prostate, left medial apex 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. peripheral zone signal intensity on T2-weighted images. * Perineural Invasion detected THANKS! Peripheral Zone: The peripheral zone is of normal homogeneous prolonged T2 and there are no suspicious focal areas of Johns Hopkins is home to many of the world's leaders in Pathology. I still have some urgency and frequency issues, but I am not complaining too bad. I had the MRI in April 2021 and it showed a PI-RADS 4 lesion. So, Radiation Oncologist prescribed Cialis 5mg, daily. Doctors can review their peers treatment suggestions and explain why they agree or disagree. Youve just been diagnosed with prostate cancer. A doctor at MSK can collaborate with another doctor to offer support and help ensure the best outcomes. Required fields are marked *, PHONE 310-827-7707 Keywords: If these do not work, your symptoms could progress and become chronic. Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. Following the advice of all on here, I need a team of doctors to manage my care. My urologist suggested a couple more PSA tests followed by an MRI. undefined will no longer be visible to you including posts, replies, and photos. We prioritized treatment as AS, FLA/TULSA (if a lesion ever presented itself), and Proton Beam Radiation. Surgeon wants next PSA in 3 months. Consultation with your nurse care manager. 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 margin of error is 1.4 percent, which is equivalent to 30,000 cancer diagnosis mistakes annually in the U.S. Of 6,171 biopsy slides sent since late 2008 for a second review at Johns Hopkins, pathologists disagreed with the diagnosis on 86 of them. With world-renowned expertise, multidisciplinary specialists and the latest data, we partner with you to make informed decisions about managing your prostate cancer. I've also read that some study's have shown that intraductal may be resistant to hormonal therapy, radiation and/or chemo. Comments appreciated, Your Primary Care Physician referred you to your diagnosing urologist whom you now trust. Either the patient or the primary physician can initiate the process of getting a second opinion. 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. I have completed all that is necessary to enter Johns Hopkins Second opinion and PTEN test program. However, older men 75 years were the least likely to report obtaining a second opinion due to dissatisfaction with their initial urologist. - Prostatic adenocarcinoma, Gleason score 3+4=7 (grade group 2, pattern 4: 5%) involving 2 of 2 cores (combined: 10.5 mm, 40%), 0.2 mm to the blue inked tissue edge Benign Processes: * Seminal vesicle invasion: None. 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. 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. Without the genomic test I have I lesion 3+3=6 and another, 3+4=7, with less than 5% pattern 4, and an MRI that shows no ECE, no other suspicious lesions and questionable cellular EPE based upon disagreement of pathologists. The side effects of the cut, radiate, hormone regime are unacceptable to me. have no symptoms, and yet you have cancer? 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! Two from one lesion were positive as was one of the two from the other. Instead, I did my homework. It didnt look at changes of grading of the cancer.The chances for some type of modification based on a second opinion are even greater than the study indicated.Asking for a second opinion could lead to a significant change in surgical or medical intervention, Netto says.Even if the diagnosis error isnt catastrophic, such as advising a patient that he has cancer when he really doesnt, an error in grading can be consequential. Have you heard of PRECISE follow up score for an MRI? This site needs JavaScript to work properly. Also, infection was noted, so the current PSA is high in part due to prostatitis. 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? Dr. Nour is 100% sure that nothing has spread. The other samples produced 4 more positive cancer cores for a total of 7 of 12 positives. )As for side effectsI occasionally have some urgency/hesitancy having to pee. With The Clinic by Cleveland Clinic, patients have access to Cleveland Clinics 3,500 specialists with extensive experience in all types of cancers. Lesion 1: Left mid-base transition zone. 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. A second opinion can accomplish a number of things. However, something is driving my PSA. Study after study confirms that doctors favor the treatment they are trained to do urologists typically recommend surgery and radiation oncologists recommend radiation. Unfortunately, monetary incentives create biases that can work against patients best interests. 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). Cancer. Expert review of your case by a Cleveland Clinic specialist. A man with a father or brother who had prostate cancer is twice as likely to develop the disease. Epstein, who views about 12,000 slides a year, called for calm in my case and suggested another biopsy in six months. !I'll try editing a previous post and see if it reads like a journal instead of creating a new thread every update.I just got my PSA results and the numbers are still trending in the right direction. Our gynecologic pathology team can also help determine if the tumor is localized or has metastasized from another region of the body. 8. 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. Adenocarcinoma: He said that he saw what JHs was referring to but did not determine EPE for a variety of reasons. 4. When you get a diagnosis of breast cancer from your doctor, its not uncommon to get a second opinion. If I am rested, I find that I am more ready than if I am not. An official website of the United States government. 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. 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. Bookshelf It starts many years ago. Two weeks later I meet with my Johns Hopkins Dr. A new study by researchers at the Johns Hopkins University has found that . 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 have had a CT of the pelvic area - negative and a whole body bone scan - negative. When Primary Care Providers (PCPs) Help Patients Choose Prostate Cancer Treatment. Disclaimer. If the problem is unresponsive to other treatments, your doctor may suggest a surgical procedure. Of course, my old school Urologist recommended surgeryHe, of course, knew the best robotic surgeons around.Anyway. T2W MRI score= 2, DW MRI score= 3, DCE MRI score=positive Atrophy I am an airline pilot with exposure to radiation, jet fuels/fumes, etc. Studies show the clinical and financial benefits of obtaining a pathology second opinion. Seminal vesicles and other margins are negative for tumor. 2. 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. Getting a second opinion can sometimes lead to a complete change in diagnosis (such as cancerous to benign or vice versa) in non-cancerous growths, inflammatory disorders, infections, cancer and other conditions. -------------------------------------------------------- The PSA Doubling Time parallels my Urologist Doubling Time (I keep changing Uro until I find one who makes sense)! My girlfriend lives 2 blocks from the Emory Proton Clinic.We prayed on it and overthought the crap out of it. When to move from Active Surveillance to Treatment for Prostate Cancer? Radhakrishnan A, Grande D, Ross M, Mitra N, Bekelman J, Stillson C, Pollack CE. 2/23 PSA 4.7/fPSA 12% taken for 4K score (lab #2) Obviously the Covid 19 issue is playing a part in all of our decisions. It's a bit confusing since most experts now don't consider Gleason 6 to be a true cancer, so did i test positive in 2 cores or 4? 2015 Feb;115(2):188-97. doi: 10.1111/bju.12665. Hillen MA, Medendorp NM, Daams JG, Smets EMA. The PubMed wordmark and PubMed logo are registered trademarks of the U.S. Department of Health and Human Services (HHS). A patient suffering from an enlargement of the prostate may have pain in his lower abdomen and genitals. My question is--what importance do volume levels play in determining when to move from AS to treatment? Prostate volume: 17.58 cc The Journal of the American Board of Family Medicine published a study in 2017 that found that many patients do not get a second opinion outside of their PCPs original referral2. How important is Oncotype DX test for Gleason 7? Note respondents were able to, MeSH Masks are required inside all of our care facilities. What have your doctors told you? 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 . Find more COVID-19 testing locations on Maryland.gov. Last year, Epsteins lab reviewed the pathology reports of 30,000 cases in which patients requested second opinions.Netto says patients should be proactive in requesting that doctors take another look.A second opinion can reverse the diagnosis in up to 5 percent of cases for some types of cancers, he says, like those of the breast and pancreas.Diagnosis Errors by the Numbers. The total number of cores identified is 3 They seem to think it'll do the trick.I feel great and I am glad I chose this treatment path. * PIRADS v2 Score: 3 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. This has only low-level nonspecific activity with SUV max of 2.05 and may be due to degenerative changes at the symphysis pubis." Cancer patients are encouraged to obtain second opinions before starting treatment. Most reputable HMOs can, however, deliver state of the art treatment for most cancers. According to The National Institute on Aging, prostate problems are common after age 50. Tumor Quantifications: Out of 12 cores, 9 are positive. Finally, things are set and I know what is going to happen. 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. My profession for forty years was health actuary consultant, so I have a pretty fair understanding of health data, outcomes, and risks. And just this week, 1 YEAR post treatment, it is .46. H. Prostate, lesion #2, core biopsy: Overall PIRADS Score: 5/5 * PIRADS v2 Score: 5 They hesitated calling it a TARGET LESION, but scored it PIRADS 4. 3. 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. 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. 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. No two cases of prostate cancer are alike and an accurate diagnosisis critical to developing the best treatment plan. Im also wondering why no one has scheduled me for MRI to see what biopsy missed. This is a PI-RADS 5 lesion in TZ zone more beneficial, but fairly large compared to whole gland and proximity to capsule edge would likely mean treatment would be suggested. They agreed with the PI-RADS 4. Yet none of my doctors ever mentioned it! Be sure to ask about and research the skills and experience a doctor has with treating prostate cancer. Using the Bullet Volume gives you gland of 25.55. We provide second opinions on the full range of gynecologic cancers: Ovarian Uterine Cervical Vulvar Vaginal Fallopian tube Placental tumors Some peritoneal cancers Secondary Gleason grade: 4 Prostate, left lateral apex: * Extracapsular extension: Possible involvement of the anterior Treatment decisions for prostate cancer should not be rushed due to a mistaken belief that immediate treatment is required. - DCE = (+) I find that when I'm trapped in the cockpit not able to use the bathroom for a long time is when I experience that most. doi: 10.1002/cncr.30412. There are so many different departments at Hopkins that I don't know the optimal department to contact. Benign prostatic tissue In severe cases, a catheter may be required to relieve the symptoms. I'm currently in the process of getting an appointment set up with a Dr. Wang at UCLA. Then about a month later I started 28 fractions of Proton Radiation.It was painless. He schedules appointments with a Radiologist and two local surgeons. I now have my list whittled down to 3. I've been on AS since April 2016. * Gleason Score: 3+4 (4 of 6 specimens), 14 specimens taken However, before getting a second opinion, its best to check with your insurance company to see if there are any limitations in coverage. Utilize your primary care physicians as an un-biased resource to help you get second opinions from a range of specialists. A PSA test at time of biopsy revealed my PSA had risen to 6.5. Hello everyone. We will then prepare a written recommendation regarding your treatment plans or options. The results seemed fairly benign and my urologist and I decided to continue to monitor with 2 more PSA tests and then consider an MRI in April 2021.
[email protected], 7 Tips for Seeking Second Opinions For Men with Prostate Cancer. Either the patient or the primary physician can initiate the process of getting a second opinion. I made the appointments. 4, Dr. Jonathan Epstein explains the benefits of getting a pathology second opinion. No one at Hopkins has ever died of prostate cancer if he had Gleason 3 + 3 cancer." So, I go one better, I call up Johns Hopkins and find a Dr who does DaVinci Prostate Surgery. In the United States, prostate cancer is among the most common cancers found in men. 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. 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. present in bladder. Forty percent of the men obtained a second opinion from urologists, most often because they wanted more information about their cancer or wanted to be seen by the best doctor . 2017 May-Jun;30(3):298-307. doi: 10.3122/jabfm.2017.03.160359. But, after 4 drinks or if I'm tired/jet lagged I find that sleep is more appealing than sex. So, I also sent this MRI result to Johns Hopkins for a second opinion.