Not all cancers are the same and not all treatment plans are absolutely clear. Last year, Epstein's lab reviewed the pathology reports of 30,000 cases in which patients requested second opinions. 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. The site is secure. After sending off all of our records, CD of MRI and path reports, my husband is booked for screening in December. You think your doctor is underestimating how serious your cancer is. -------------------------------------------------------- By Dec 2019, my PSA reached 4.13. This is often the case when the primary physician advises an expensive treatment. And just this week, 1 YEAR post treatment, it is .46. 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. The more accurate the information we have, the better our treatment decisions. 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. Cancer vaccines.For a long time, the promise of cancer vaccines that would protect healthy people at high risk of cancer has only dangled in front of researchers. I have requested a second pathologist's opinion from Johns Hopkins based on feedback from this forum. A newly published paper by Fischer et al. * Location: Left, anterior, base to apex, transition zone HMO members may also be discouraged from trying expensive treatments that have only a small chance of success, even if that chance is real. Second opinion Johns Hopkins? - Prostate cancer Now, though, encouraging animal data and preliminary studies in human patients are making some doctors feel optimistic. There are also many reasons why you may want to seek another opinion during the course of your cancer care. * Sloan only sent partial cores, slides 1 and 4. The review process normally takes several days, after which we will send your slides and other materials are returned. There is no evidence I was to follow up with my new Urologist (another surgeon) for 3 months PSA checks and annual 3T-MPMRI.My PSA checks were static and the next year's MRI looked just like the first. It was easy. 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. At that point I agreed to the TRUS biopsy which I had on October 10, 2020. Getting A Second Opinion On Your Pathology Report - Cancer ABCs - 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 If they have an enlarged colon, their physician can perform a TURP procedure. Most reputable HMOs can, however, deliver state of the art treatment for most cancers. In My Opinion? Get A Second Opinion | ZERO Prostate Cancer But, after 4 drinks or if I'm tired/jet lagged I find that sleep is more appealing than sex. 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 . They may defer to the recommendation of the specialist, or refer you to a doctor with limited prostate cancer experience. Both of which are normal volumes, the Bullet Volume is considered more precise in prostates smaller than 55ml. Patient-Driven Second Opinions in Oncology: A Systematic Review. This puts PCPs in a unique position to impact the treatment decisionif they only refer to urologists and not to radiation oncologists or medical oncologistssurgery is a likely treatment outcome. 6. 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. 3: Prostate, right medial apex I also changed my diet to plant based food, started juicing, and started taking supplements (think Turmeric, Green Tea, etc.). Masks are required inside all of our care facilities. 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. Before Find more COVID-19 testing locations on Maryland.gov. Patient-initiated second medical consultations-patient characteristics and motivating factors, impact on care and satisfaction: a systematic review. Your current doctor will frequently suggest a second opinion, if only to confirm the recommended course of action. Masks are required inside all of our care facilities. If pain is present, a digital rectal examination will reveal hard areas. 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. It is very rare (<3% of all prostrate cancers) and potentially very lethal (one study showed that 59% of men in the study with Gleason scores of 5 had died within 3 years and it had metastasized in 13% of the remaining men). Should You Exercise When Youre Expecting? A second review of Pathology more frequently also brings changes to the cancer grade or stage, which can affect prognosis as well as therapy. Overall PIRADS Score: 2/5 Confused about Pathology report and course of action, Phone Number for John's Hopkins Radioogy Second Opinion. mail@prostateoncology.com, 7 Tips for Seeking Second Opinions For Men with Prostate Cancer. 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. We are vaccinating all eligible patients. Possible additional organ confined malignant lesion in right apex 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. 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. As a result, patients struggle to differentiate bias from fact. With The Clinic by Cleveland Clinic, patients have access to Cleveland Clinics 3,500 specialists with extensive experience in all types of cancers. What are you doing about it? Anyone with insight into this and advice? B. Prostate, right mid, core biopsy: 30%/40% or higher)? Allow yourself the time to seek multiple opinions. 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. Treatment decisions for prostate cancer should not be rushed due to a mistaken belief that immediate treatment is required. Over kill and redundancy I know, but it's my money, my prerogative. 2. PROSTATE LESIONS: 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. Expert review of your case by a Cleveland Clinic specialist. Many health insurance companies will pay for a second opinion, especially if it is for a medically necessary treatment. The results of the MRI said they found a PYRAD 5 lesion, but did not find any cancer outside prostate. 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." Details are here: However, many insurance and health care companies do pay for such opinions and acknowledge the importance of second opinions. The urologist/surgeon indicated that other forms of treatment like TULSA are not options since my cancer is multifocal. I would love to hear from anyone who has been involved in the Chicago study. Get a Urology Second Opinion | Johns Hopkins Brady - Hopkins Medicine It can be caused by many factors, including infection and inflammation. SO. 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. Tumor Quantifications: There is no bony or bulky nodal disease in the pelvis Following application of the relevant exclusion criteria, 2365 respondents remained in the analytical cohort. Now its easier than ever to get the answers you need and peace of mind you deserve. Which Patients Report That Their Urologists Advised Them to Forgo Initial Treatment for Prostate Cancer? Surprisingly, while one in nine men will get diagnosed with prostate cancer in their lifetime1, there are very few doctors who specialize exclusively in treating prostate cancer. It's really that simple! - DCE = (+) I am meeting with a multidisciplinary team of docs on March 18 at St. Joe's in Atlanta. 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). This condition causes pain in the lower back and groin area, and may cause urinary retention. It may be a new cancer, but it is more likely a recurrence since it is really near the ablation zone. Prostate cancer is the second-most diagnosed cancer in American men. doi: 10.1001/jamanetworkopen.2020.28320. Pingback: PROSTATE PROS Episode 6: Breakthroughs in Radiation PROSTATE ONCOLOGY SPECIALISTS, Pingback: Like Man, Im Tired (Of Waiting): The How-to Guide for Men with Prostate Cancer PROSTATE ONCOLOGY SPECIALISTS, Your email address will not be published. And should I treat prostatitis before FLA? Dr. Jonathan Epstein of Johns Hopkins University Hospital. Careers. Get a Second Opinion I hope my story helps anyone out there just starting the process. Of course, my old school Urologist recommended surgeryHe, of course, knew the best robotic surgeons around.Anyway. 4. 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. MRI RE-READ #1 (well known radiologist, but free advice over phone, but no written report): And it is OK to have paralysis by over-analysis. Results: I am 58 and in very good health otherwise. Greatest dimension 2cm. 10. Left mid-base transition zone (PIRADS 5). Potentially inaccurate results can lead to selection of the wrong type of therapy. Due to the spread of the Coronavirus worldwide and the first confirmed case of the Coronavirus disease in Turkey, the executive team of the Anadolu Medical Center has taken preventive measures to protect the patients and their relatives. * Perineural Invasion detected 6: Prostate, left medial base 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. In those cases, patients are tremendously grateful for having received the advice and encouragement to get a second opinion, Dr. Matasar adds. I now have my list whittled down to 3. A small early-stage clinical trial found that a carefully selected group of patients who responded remarkably well to chemotherapy could skip surgery altogether. 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. He turned to the Top Gun of Prostate Pathology: Jonathan Epstein, MD, the guru of Gleason scoring at Johns Hopkins University in Baltimore. All wanted to do what they do, schedule treatment which at this time is only Gleason 6 which I now know is not life threating. In severe cases, a catheter may be required to relieve the symptoms. First of all we would like to emphasize that the health of our employees, our patients and their relatives is our first priority. You May Like: Prostate Radiation Treatment Side Effects. No definitive evidence of distant metastatic disease is seen." 2. * Gleason Score: 4+5, Slide 4 (vs. Sloan's 3+4) Prostate, right anterior MRI lesion: Asking about other experience with conflicting Prostate Biopsy Opinions. I also sent my biopsy slides to Johns Hopkins for a second opinion (Epstein's read was 3+4, but with lower pattern 4 involvement than the local pathologist.). Who should I contact at Johns Hopkins to get a second opinion on a biopsy? Just took time off and then life happened.Thanks in advance for the insights. T2W MRI score= 2, DW MRI score= 3, DCE MRI score=positive 1: Prostate, right lateral apex 5/10 PSA 4.2/fPSA 9% taken at MSKCC (lab #3) I was confident I was making the right decision. MEASUREMENTS: The treatment of prostate cancer has evolved tremendously. For cancers that are less common, second opinions can offer more treatment options. Men often seek second opinions from urologists before they initiate treatment for their newly diagnosed prostate cancer. This fluid causes the prostate to swell and cause a number of bladder-related symptoms. notable articles of 2016 - Johns Hopkins Bloomberg School of He was right. 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. Breast cancer.A new study suggests surgery may not always be necessary for all breast cancer patients. - High grade prostatic intraepithelial neoplasia (HGPIN) 53 years old 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. PSA that brought me to this was 7.1. This has only low-level nonspecific activity with SUV max of 2.05 and may be due to degenerative changes at the symphysis pubis." The percentage of tissue with carcinoma is 45% Some men may have an enlarged prostate but not notice it. 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. The biopsy disclosed I had some abnormal cells resembling cancer known as PINS, short for prostatic intraepithelial neoplasia. Hello. He recommended waiting and watching at that time due to the lower PSA reading. This site needs JavaScript to work properly. I say bullshit to them. However, older men 75 years were the least likely to report obtaining a second opinion due to dissatisfaction with their initial urologist. I am already positively surprised that I am still alive 4.5 years after my diagnosis. 9. 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. 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. 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. A second opinion is part of the education process that is critical for many cancer patients. Contact us or find a patient care location. A fusion biopsy was performed in late May and I just received those results last Thursday. It hasn't let me down. 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. advising or treating it. How could this compare using only partial slide re-reading? Surgical Delay and Pathological Outcomes for Clinically Localized High-Risk Prostate Cancer. - Prostatic adenocarcinoma, Gleason score 3+4=7 (grade group 2, pattern 4: 5%) involving 2 of 2 cores (medial core: 3.5 mm, 30%; lateral core: 2.5 mm, 20%), 0.5 mm to the blue inked tissue edge (the closer) A second opinion can help you make an informed, confident decision about your medical care. Emotional outlook is fragile at times and straight clinical approach of doctors does not help. So, I made an appointment at Emory Proton Center (Atlanta, GA) and got their opinion. Johns Hopkins Medical Laboratories 1620 McElderry St. Reed Hall Rm 315 Baltimore, MD 21205 Fax (410) 614-7712 Phone (410) 955-2405 8 am - 5 pm Normal LAB hours are: 5:30 am - 4:30 pm Mon-Fri You May Like: Prostate Cancer External Beam Radiation Side Effects. Prostate, left lateral apex: 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. Axial T1-weighted images of the pelvis show no bony or bulky nodal disease. You have a rare or unusual cancer. 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. I question the potential EPE and he said it didn't matter, but went ahead and ordered Oncotype. __________________________________________________________________________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. Sought Johns Hopkins second opinion of pathology slides. Extraprostatic extension: negative Surgeon wants next PSA in 3 months. Prostatic Adenocarcinoma Peripheral Zone: The peripheral zone is of normal homogeneous prolonged T2 and there are no suspicious focal areas of Its in your best interest to ask for another look at a cancer diagnosisIf youve recently been diagnosed with cancer, its wise to ask for a second opinion on your pathology specimen.Johns Hopkins researchers with the Urological Pathology Consult Division, led by Jonathan Epstein, M.D., first reported on biopsy errors a decade ago, when they found a margin of error in prostate cancer diagnoses large enough to give them pause. More medical freakouts. Bones: There is marketed marrow heterogeneity in the pelvic bones are not in the femoral heads. I had the MRI in April 2021 and it showed a PI-RADS 4 lesion. My questions are: Note respondents were able to choose more than one reason. Are there urologists out there that don't routinely order the DX test to get a better idea of low and intermediate risk cancers? My PSA over time has been creeping up over time (1.8 - 5/16, 1.0 8/17, 2.68 8/18, 2.9 12/18, 3.28 2/19, 3.01 8/19, 3.65 2/20, 3.31 6/20, 3.88 12/20) but I was frankly a bit shocked when I received word that I have cancer. A patient suffering from an enlargement of the prostate may have pain in his lower abdomen and genitals. You can find out by reviewing your plan or by reaching out to your insurance company. Knowing your stage and information specific to that stage makes you more medically sophisticated and enables you to navigate through the potential biases of surgeons and radiation therapists. It is OK to not understand all the terminology. We experienced information overload and decision/analysis paralysis. My mind goes all over the place as to why this is. Estimated prostate volume of 35 cc with an estimated PSA density of 0.11 ng/mL/cc. They agreed with the PI-RADS 4. Most people believe that pathology reports are always correct, accurate and that what the report says is carved in stone. The prostates function is to create some of the fluid that insulates sperm cells found in semen. Obviously the Covid 19 issue is playing a part in all of our decisions. Numerous publications show the clinical and economic benefits of obtaining a second opinion for Pathology specimens. Thankfully, prostate cancer is extremely slow growing. If the problem is unresponsive to other treatments, your doctor may suggest a surgical procedure. Hope to hear from a bunch of people. However, before getting a second opinion, its best to check with your insurance company to see if there are any limitations in coverage. With world-renowned expertise, multidisciplinary specialistsand the latest data, we partner with you tomake informed decisions about managing your prostate cancer. Study after study confirms that doctors favor the treatment they are trained to do urologists typically recommend surgery and radiation oncologists recommend radiation. 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%). MRI obtained outsideon 04/16/2021. Research was mixed on PINS, but in those days, many doctors saw them as likely to develop into cancer. * Size: 1.1 cm Many men name the diagnosing urologist as their treating doctor and do not seek other opinions. If they have an enlarged colon, their physician can perform a TURP procedure. * Adjacent organ invasion: None. Learn more through his bio: Progress in the field.In recent years, advancements in research have changed the way cancer is treated. 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. I guess TWO national centers of excellence are better than one? An acute bacterial infection can cause a burning sensation. Slight BPH findings. Even for men with faster growing, more aggressive prostate cancer, taking the time to seek a second opinion should be a priority. This is why the prostate is important to the body. Discover what's to love about Charm City for yourself. AHN patients have unprecedented access to the Johns Hopkins Center for Fetal Therapy. I retested in January 2019 and scored 4.20. Dont Miss: New Treatments For Stage 4 Prostate Cancer. Unauthorized use of these marks is strictly prohibited. Here's what JH says (same lesion). 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. Instead, I did my homework. Confounding this, I have read that the different genomic tests can disagree with each other, and that Oncotype is usually a more aggressive finding. Overall, obtaining second opinions was not associated with definitive treatment or perceived quality of cancer care. 4. If pain is present, a digital rectal examination will reveal hard areas. 2015 Feb;115(2):188-97. doi: 10.1111/bju.12665. 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. And it is OK to have paralysis by over-analysis. 7 Tips for Seeking Second Opinions For Men with Prostate Cancer 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. Their opinions are widely held to be definitive. 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. Younger men also sought the 'best' doctor. TZ zone more beneficial, but fairly large compared to whole gland and proximity to capsule edge would likely mean treatment would be suggested. (I think that it was easier to see because Mayo's MRI technology and procedures are better than SMIL's.) The total number of cores identified is 3 ADC: mean 879 / median 839 / st dev 223 I will say, the people I dealt with at Johns Hopkins were extremely nice and professional. It has been 2.5 years and the PSA has still not doubled as well. Cancer ABCs recommends: Johns Hopkins Hospital in Baltimore, Maryland, specifically Dr. Jonathan Epstein. Men have plenty of time to seek multiple opinions and thoroughly research each option before making a decision. 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). So, Radiation Oncologist prescribed Cialis 5mg, daily. Send a Consult for Second Opinion | Johns Hopkins Pathology We are vaccinating all eligible patients. And in some cases, the information you gain during a second opinion consultation can even change your diagnosis. Family history of prostate cancer. Unbelievable that this happened!!! Your current doctor will frequently suggest a second opinion, if only to confirm the recommended course of action. So, Radiation Oncologist prescribed Cialis 5mg, daily. Diffusely decreased That being said, they can be a beneficial member of the treatment team. About 80 percent of prostate cancers are diagnosed at a localized stage, which means that the cancer hasnt spread outside of the prostate. Benign Processes: Radhakrishnan A, Grande D, Mitra N, Bekelman J, Stillson C, Pollack CE. I officially joined the club with diagnosis on March 21: three small lesions with a GS 6 on one side and both a GS 6 and a GS (3+4) 7 on the other side. 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. Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. Getting a second opinion on a diagnosis can reverse a diagnosis or alter the treatment plan. Heres What You Need to Know, Prostate Cancer Spotlights in 2020: A Year in Review, Find out about PSMA PET Imaging on Prostate Pros Podcast. (I must say that those low numbers concern me a bit.) Urologists at the Johns Hopkins Brady Urological Institute can make the difficult process of deciding on a treatment plan easier. And collaborating with Johns Hopkins Medicine means we can provide you with second opinions, streamlined and guided access to clinical trials, and a proven track record of excellence in care. Dr. Nour is 100% sure that nothing has spread. A. Prostate, right base, core biopsy: Hillen MA, Medendorp NM, Daams JG, Smets EMA. About this time, I started reading this forum and my ignorance starts going away. Prostate cancer is the second-most diagnosed cancer in American men.

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