About 60% of prostate cancers occur in people older than 65. 4.5 year journey (18 months post proton beam), 4.5 Year Update (18 month post Proton Beam). There are also many reasons why you may want to seek another opinion during the course of your cancer care. 180 days after treatment PSA was .50. Prostate, right lateral base: FYI-We are also considering the trial at Princess Margaret Hospital in Toronto. Got the fiducials placed, the Space-OAR gel placed, mold made, and had the pre-treatment MRI and CT Scan. Thankfully, prostate cancer is extremely slow growing. Benign Processes: Dr. Jonathan Epstein of Johns Hopkins University Hospital. I wanted to keep my options open. Out of 12 cores, 9 are positive. According to the doctor it is around 3 mm. Anyone else encounter something like this? He was right. Is the destruction of my prostate inevitable and necessary for my survival (my understanding is that both surgery and radiation will do this)? Many researchers believe PTEN present is a strong brake on Many health insurance companies will pay for a second opinion, especially if it is for a medically necessary treatment. prostate volume). Get a Second Opinion What can a second opinion tell me? I am an airline pilot with exposure to radiation, jet fuels/fumes, etc. The percentage of tissue with carcinoma is 45% 6. It is OK to be overwhelmed with info. Conclusions: Last year, Epstein's lab reviewed the pathology reports of 30,000 cases in which patients requested second opinions. This is often the case when the primary physician advises an expensive treatment. My questions are: Six weeks later I have the biopsy in his office and a week later I get the results. 4, Dr. Jonathan Epstein explains the benefits of getting a pathology second opinion. If they have an enlarged colon, their physician can perform a TURP procedure. And if so, what does being accepted in a AS program look like, do I need to be present at their location? It can be caused by many factors, including infection and inflammation. The other samples produced 4 more positive cancer cores for a total of 7 of 12 positives. My long-term prognosis appears to be good with minimal side effects. 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. We have a surgery date set up for the end of July at Johns Hopkins (our second opinion team).His stats:63yo, non smoker, 167lbs, Vegetarian/Vegan diet no other known health issuesWalks dogs for a living and cares for our small farmPSA 3.3 (Jumped from 1.6 in a year)Biopsy Scores 3+5, 4+3. This shows very high signal intensity on the diffusion-weighted Second round of Radiation Therapy - t - Advanced Prostate Diffusely abnormal appearance of the prostate may reflect prostatitis, which can obscure underlying prostate cancer. Where Should I Go for a Second Opinion? - breast cancer 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. Estimated prostate volume of 35 cc with an estimated PSA density of 0.11 ng/mL/cc. Call us with any questions: 410-955-2405, ext. I hope my story helps anyone out there just starting the process. However, seeing him will be another 8 weeks, but he wants my biopsy slides (second opinion) before we meet. This kills both birds with a single stone. Expert review of your case by a Cleveland Clinic specialist. Now the oncologist wants to perform a PSMA Pet Scan. I was offered to have my first biopsy sent to Johns Hopkins for second opinion and said why not? which came back with Gleason 9 three weeks after having the what we thought was G-7 ablated. !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. MM, Much to my dismay my 4th targeted biopsy Oct 12 revealed 5% G4 (upgraded from Grade Group 1 to 2 (Gleason 3+4 intermediate/favorable). There is no one-size-fits-all treatment for prostate cancer. Check Biopsy and Imaging Results for Accuracy. I asked the urologist who did our Second Opinion at Johns Hopkins and although he thinks RP is the way to go (due to higher PSA of 10.18), he highly recommended Dr. Eggenger (Chicago). Would you like email updates of new search results? Over 80,000 specimen cases are seen at Johns Hopkins each year. So, Radiation Oncologist prescribed Cialis 5mg, daily. The neurovascular bundles are intact. Extraprostatic extension: negative This site needs JavaScript to work properly. Has anyone sent Radiology (mpMRI) reports and images to Hopkins for Second Opinion Review? However, just to be safe she schedules me for TRUS biopsy with the Urologist in another 6 weeks. Epstein, who views about 12,000 slides a year, called for calm in my case and suggested another biopsy in six months. I've also read that some study's have shown that intraductal may be resistant to hormonal therapy, radiation and/or chemo. The Johns Hopkins University, The Johns Hopkins Hospital, and Johns Hopkins Health System. * Asked and Dr. said he isn't overly concerned about perineural finding with the grade and it won't impact treatment options or overall prognosis. 3 months has passed, and its time for a PSA and a plan to have an MRI. He schedules appointments with a Radiologist and two local surgeons. Men often seek second opinions from urologists before they initiate treatment for their newly diagnosed prostate cancer. 1: Prostate, right lateral apex I had no idea there were second opinions and I didn't have a clue about Genomic testing, or even genetic testing. Benign fibromuscular stroma; no prostatic glands are identified 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. There are lots of lessons learned on the forum. Dr. said pirad-5 and to prepare for bad news and probably around a Gleason 7 and that he is rarely wrong. Inflammation of the prostate can affect the bladder and result in discomfort and other symptoms. Prostate Cancer Grading: Read Also: What Are The Signs Of Prostate Infection. Four weeks after a radical prostatectomy for prostate cancer, he was back in the pool. Blessings. My experience at Johns Hopkins was awesome. H. Prostate, lesion #2, core biopsy: Most people believe that pathology reports are always correct, accurate and that what the report says is carved in stone. Benign fibromuscular stroma; no prostatic glands are identified 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. Youve just been diagnosed with prostate cancer. We used multivariable logistic regression models to evaluate the relationship between second opinions and definitive prostate cancer treatment and perceived quality of care. fibromuscular stroma, anterior prostatic contour is smooth. There is no evidence Both Drs and nurses knew what they were doing and had lots of experience. Thank you for your understanding and cooperation. Obviously the Covid 19 issue is playing a part in all of our decisions. I say bullshit to them. All rights reserved. My involvement is below maximum of 15% of core. * Gleason Score: 4+5, Slide 4 (vs. Sloan's 3+4) I assume the data on gleason scoring is much more robust/reliable than genomics as it has been around longer and used more extensively. We are vaccinating all eligible patients. Also, Oncotype subsequently invalidated my results because they found in the history that I had a prior FLA. Its gone.I have been advised to have a Axumin Pet scan as follow up as the first pathology report indicated perineural invasion present as well as probable introductal carcinoma. In addition to providing a better understanding of your diagnosis, a second opinion can also shed new light on treatment options and give you confidence in how to proceed with your care. 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. 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. Find more COVID-19 testing locations on Maryland.gov. 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. doi: 10.1136/bmjopen-2020-044033. After all, it seems like good idea to deal with your cancer sooner rather than later. At a rectal exam 6/20 the urologist told me my prostate felt normal, not enlarged, nor did he feel any tumors. So, I made an appointment at Emory Proton Center (Atlanta, GA) and got their opinion. 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. Here are the details: That's the good news. This approach helps to decrease side effects that can affect a patients quality of life, such as erectile dysfunction, incontinence or other urinary-tract symptoms. Get directions, important phone numbers, locations and more. -------------------------------------------------------- Im immediately referred to Urologist. I fear limiting myself to an inferior treatment because the people I talk to have hammers, therefore everything must be a nail. An acute bacterial infection can cause a burning sensation. asymmetric central zone tissue more pronounced on the left. According to The National Institute on Aging, prostate problems are common after age 50. Prostatic Adenocarcinoma 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. We have a consult on Friday with the 1st opinion doc to review all tests. Prostate cancer is a malignant (cancerous) tumor of the prostate, a gland found only in men. Im currently 67 years old. One Johns Hopkins study showed that out of 14,000 men who had surgery and were found to have Gleason 6 cancer confined to the prostate, "zero of those 14,000 men had lymph node metastases. Which Patients Report That Their Urologists Advised Them to Forgo Initial Treatment for Prostate Cancer? My question is--what importance do volume levels play in determining when to move from AS to treatment? Nor did I have any idea that the 1 core had 20% involvement and <5% pattern 4 involvement. Thanks, BigD. Required fields are marked *, PHONE 310-827-7707 EDI am now 52 and not quite functioning like I did 4+ years ago. They want him to start radiation 25 sessions and chemo pills of Casodex 50 mg 28 pills. 7: Prostate, left lateral apex Thanks, 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. Im also wondering why no one has scheduled me for MRI to see what biopsy missed. have no symptoms, and yet you have cancer? When I read the forums and questions on this site everyone mentions their Gleason Score from their biopsy. 4. Five years ago I had a TURP. Surgery took about 3 hrs. Everything seems to be on track to remove the cancer and be cured! * Seminal vesicle invasion: None. Will these places of excellence consider me, or am I bound to my regular doctor for insurance purposes? The symptoms of acute bacterial prostatitis are similar to those of CPPS. -------------------------------------------------------- Some docs say clean up the prostatitis while others tell me to avoid overuse of Cipro as it loses its effectiveness over time. Perineural invasion is identified 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. 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. The lesion also shows focal increased permeability. Urologists at the Johns Hopkins Brady Urological Institute can make the difficult process of deciding on a treatment plan easier. 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, Read Also: Nhs Prostate Cancer Risk Calculator. Prostate, left anterior MRI lesion: * Prostate volume: 22 cc Keep in mind that not all PCPs are knowledgeable about prostate cancer or know the skill levels of all the specialists in the field. I've been on AS for two years after my initial TRUS biopsy showed 3 cores 3+3 (10% volume) on Right side, and 2 cores 3+3 on Left side. Lesions are all small or very small. To learn more about how to get a Neuropathology second opinion, please visit our Neuropathology Division second opinions website. I have searched the country for intervential radiologist that perform FLA on the prostate. I had been carefully watching as my PSA increased to 3.2 from 3.9 in summer 2010. It is best to begin by talking with the doctor who made your initial prostate cancer diagnosis. The urologist offered surgery and radiation as options on 3/10 when we met. It has been 2.5 years and the PSA has still not doubled as well. intricate disease and not all doctors have the same amount of experience 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. Prostate Cancer | Johns Hopkins Brady Urological Institute * Extracapsular extension: None. This has raised some questions on all the scans so far. Value of Second Opinion in Prostate Cancer Uncertain, Says - AJMC See this image and copyright information in PMC. My thoughts focus on the fact that I have a disabled son who needs my care. 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. You May Like: Best Treatment For Intermediate Prostate Cancer. Please enable it to take advantage of the complete set of features! With AHN Cancer Institute, you already get a world-class cancer program with leading expertise, care, and outcomes. However, many insurance and health care companies do pay for such opinions and acknowledge the importance of second opinions. probably organ confined disease. No two cases of prostate cancer are alike and an accurate diagnosisis critical to developing the best treatment plan. First of all we would like to emphasize that the health of our employees, our patients and their relatives is our first priority. I measure PSA frequently, and it is stable and slightly declining with the last score at 5.5. the transition zone. Peripheral Zone: The peripheral zone is of normal homogeneous prolonged T2 and there are no suspicious focal areas of The total number of cores identified is 3 * Perineural Invasion also detected mail@prostateoncology.com, 7 Tips for Seeking Second Opinions For Men with Prostate Cancer. These findings are suspicious for degenerative changes however a subtle/early metastatic lesion cannot be excluded and continued periodic follow-up is recommended." This fluid causes the prostate to swell and cause a number of bladder-related symptoms. 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. However, it also is possible to seek a pathology second opinion on your own, and it does not require an in-person office visit. 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. Find more COVID-19 testing locations on Maryland.gov. It hasn't let me down. * Seminal vesicle invasion: None. Prostate, left lateral base: Not all cancers are the same and not all treatment plans are absolutely clear. They seem to think it'll do the trick.I feel great and I am glad I chose this treatment path. 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. When Primary Care Providers (PCPs) Help Patients Choose Prostate Cancer Treatment. Get a Second Opinion: Johns Hopkins Kimmel Cancer Center The results were ambiguous. Pathology reports are subjective. For these reasons, it is a good idea for HMO members to get a second opinion and make sure they are informed about clinical trials or other promising new treatments. Thank you! 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.). 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. HHS Vulnerability Disclosure, Help FAX 310-574-4002 From what I've learned from Dr. Scholz videos at PCRI, and from posts on this site it would lead me to believe the DX test is fairly common knowledge. Seminal vesicles: The seminal vesicles are normal and symmetrical bilaterally. With The Clinic by Cleveland Clinic, patients have access to Cleveland Clinics 3,500 specialists with extensive experience in all types of cancers. Read Also: Long Term Side Effects Of Brachytherapy For Prostate Cancer. 1. 1. About 80 percent of prostate cancers are diagnosed at a localized stage, which means that the cancer hasnt spread outside of the prostate. If anyone has used him, please let me know what your experience was like. Diffuse probable benign peripheral zone changes limit evaluation for 6. Explore our state-of-the-art patient care facilities in the Sheikh Zayed Tower. 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. J Am Board Fam Med. A patient suffering from an enlargement of the prostate may have pain in his lower abdomen and genitals. Nor did I have any idea that the 1 core had 20% involvement and <5% pattern 4 involvement. Utilize your primary care physicians as an un-biased resource to help you get second opinions from a range of specialists. 2021 Sep 24;11(9):e044033. However, there were no other suspicious areas on MRI. I'm turning 58 in one week. My girlfriend lives 2 blocks from the Emory Proton Clinic.We prayed on it and overthought the crap out of it. 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. * Size: 1.1 cm Also, infection was noted, so the current PSA is high in part due to prostatitis. 5. Unlike pathology labs in most hospitals, Jonathan Epstein's lab at Johns Hopkins has pathologists who specialize in reading prostate tissue samples. Medical record collection from doctors and hospitals. 10. Second Opinions An accurate diagnosis is essential to ensure that the correct and most effective treatment is given. government site. Good Day Everyone. Following the advice of all on here, I need a team of doctors to manage my care. Getting a second opinion on a diagnosis can reverse a diagnosis or alter the treatment plan. I certainly would - after all, there's a certain brotherhood bond here. Dont Miss: Screening For Prostate Cancer Icd 10. peripheral zone signal intensity on T2-weighted images. Dont Miss: New Treatments For Stage 4 Prostate Cancer. Whats right for you will depend on the stage of the cancer, your level of risk and your general overall health. They hesitated calling it a TARGET LESION, but scored it PIRADS 4. The purpose of starting this discussion is to gather peoples thoughts and opinions and actual experiences with Prostate Focal Laser Ablation. This Dr is in charge of active surveillance program at JH so I knew that he wouldnt recommend surgery unless it was really needed. Diffusely decreased LESION 1 I was confident I was making the right decision. Masks are required inside all of our care facilities. 8600 Rockville Pike Second Opinion Pathology | MD Anderson Cancer Center Surgery seems like overkill for me with too many risks for incontinence and permanent ED, am I overlooking something? Most choose treatment they originally planned to follow, study finds. You may be concerned that the cancer will grow rapidly out of control before you are able to get a second opinion. I have posted here before, now with an update. A few weeks later and just before my meeting with my new Johns Hopkins Dr I get the second opinion results from both biopsy and MRI. Get a Second Opinion | Johns Hopkins Pathology Reinterpretation of imaging scans and lab tests. -------------------------------------------------------- 9: Prostate, left anterior MRI lesion Our team approach brings together highly experienced prostate cancer experts from across disciplines to collaborate on each patients total care, from diagnosis through treatment and recovery. Does every biopsy provide a Gleason Score? Do I need a third opinion? Second Opinion For Cancer Treatment And Care | CTCA | City of Hope 9. First 6 week PSA is undetectable. Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. About 80 percent of prostate cancers are diagnosed at a localized stage, which means that the cancer hasn't spread outside of the prostate. Learn MoreFor more information about pathology second opinions, visit pathology.jhu.edu or call 877-546-1872. Their MRI was more sensitive and found there were actually 2 lesions close together that looked like one on the prior MRIs. What is NOT OK is quitting or avoiding the bad news, or handing the entire decision over to someone else.Good luck fellas! )I contacted Dr Busch (still in Chattanooga at the time) and he called me directly to talk me off the ledge. 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. Note respondents were able to, MeSH It may be a new cancer, but it is more likely a recurrence since it is really near the ablation zone. The only prescriptions I take are for GERD (Protonix), cholesterol (Atvorstatin), and allopurinol for an episode of gout that I got while doing physical rehab for a bad tibia break (I shattered my tibia plateau 2/2020 and have pretty much recovered). If pain is present, a digital rectal examination will reveal hard areas. We experienced information overload and decision/analysis paralysis. A total of 2386 men responded to the survey (adjusted response rate, 51.1%). The PubMed wordmark and PubMed logo are registered trademarks of the U.S. Department of Health and Human Services (HHS). Johns Hopkins Medicine A commercially available genomic test may help oncologists better determine which patients with recurrent prostate cancer may benefit from hormone therapy, according to new research from the Johns Hopkins Kimmel Cancer Centerand 15 other medical centers.