* Size: 1.5 cm Disclaimer. Only took Motrin and Tylenol for pain after release. And luckily I lived in Chattanooga and had mutual friends with Dr. Joe Busch (my Urologist never mentioned him, yet we could almost see his facility from the exam room in which he broke the news. Usually, patients obtain a second opinion after being referred to a second physician or to a special team of experts in a cancer center, called a multidisciplinary team. Value of Second Opinion in Prostate Cancer Uncertain, Says - AJMC notable articles of 2016 - Johns Hopkins Bloomberg School of * Should still go for a Johns Hopkins second opinion on the pathology or is that overkill since the first one was done at MSKCC? We experienced information overload and decision/analysis paralysis. It may be a new cancer, but it is more likely a recurrence since it is really near the ablation zone. Dont Miss: Function Of The Prostate Gland And Seminal Vesicles. My direct phone (mobile) number is 703-992-3662, or you can private message me via this platform. About 60% of prostate cancers occur in people older than 65. There are so many different departments at Hopkins that I don't know the optimal department to contact. The purpose of starting this discussion is to gather peoples thoughts and opinions and actual experiences with Prostate Focal Laser Ablation. So, I made an appointment at Emory Proton Center (Atlanta, GA) and got their opinion. Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. I followed up with the original pathologist to compare and he was more forthcoming. Two things you learn here is get a second opinion from Johns Hopkins on biopsy and get treated at Center of Excellence. I am 65 and in excellent general health. 53 years old Call us with any questions: 410-955-2405, ext. Over 80,000 specimen cases are seen at Johns Hopkins each year. Include Your Primary Care Physician as Member of Your Treatment Team. Consult Fees In some cases, additional testing may be required. Greetings gentlemen! The issues in my prostate from the first procedure onward have all been in the same area and the rest of my prostate from the first biopsy and subsequent MRIs onward have never shown any indications of cancer in other areas. Im currently 67 years old. 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. Prostate, left lateral base: -------------------------------------------------------- 7 Tips for Seeking Second Opinions For Men with Prostate Cancer My PSA went up from 3.5 post FLA (It was 7.2 pre-procedure) to 6.7 in 2021, so I went to another radiologist to do an MRI guided biopsy of the suspected area that was near the prior ablation zone. We had the 3T MRI (no coil) and MRI guided biopsy at Sperling in NY, and then had a 2nd Opinion done by Johns Hopkins. 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. Cancer. Metastatic disease considered less likely for this pattern. 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. First MRI done in June 2016 by Scottsdale Medical Imaging - nothing found. 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 . Request an Appointment 410-955-6100 Second opinions are a common practice in any area of medicine that is complex and that has multiple treatment options available. Keywords: Recovery from Prostate Cancer | Bills Story. Prostate cancer is the second-most diagnosed cancer in American men. 4. They are not objective. I didn't study for the test and it's possible some morning activities might have affected my test score :) * PIRADS v2 Score: 5 Even for men with faster growing, more aggressive prostate cancer, taking the time to seek a second opinion should be a priority. Prostate, left lateral apex: I am already positively surprised that I am still alive 4.5 years after my diagnosis. information. He also said perinueral invasion, but not extracapsular extension. - High grade prostatic intraepithelial neoplasia (HGPIN) Men often seek second opinions from urologists before they initiate treatment for their newly diagnosed prostate cancer. doi: 10.1001/jamanetworkopen.2020.28320. You have a rare or unusual cancer. My involvement is below maximum of 15% of core. We specialize in minimally invasive procedures to treat BPH, including: For selected BPH patients, our specialists also perform transurethral resection of the prostate , a procedure that requires no incisions and has a high rate of success. Overall, obtaining second opinions was not associated with changes in treatment choice or with improvements in how patients viewed their quality of cancer care. I could not get a definitive answer from them on how much, how many cells, or any information. Cleveland Clinics Virtual Second Opinions program connects you to an expert physician who specializes in your specific health needs. To schedule an in-person visit for a second opinion or to determine if a telemedicine consultation is possible, call: In addition to cancer, our urologic team provides second opinions regarding urinary stone disease, urinary tract reconstruction, incontinence, male infertility and sexual health, and many other urologic conditions or procedures. * Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project Radhakrishnan A, Grande D, Mitra N, Bekelman J, Stillson C, Pollack CE. I had my first of those 2 PSA tests last week and it dropped to 4.77. * Adjacent organ invasion: None. Getting A Second Opinion On Your Pathology Report - Cancer ABCs Second Opinions An accurate diagnosis is essential to ensure that the correct and most effective treatment is given. Move ahead to Dec 2020. Several friends rushed towards surgery and now wish they had the information he provides before they decided to go with such care. - Johns Hopkins Medicine -- Get a Second Opinion Men often seek second opinions from urologists before they initiate treatment for their newly diagnosed prostate cancer. 6 A study at the Johns Hopkins Health System found it was 3.4 times more common in Black Americans than in White Americans. 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 suggest for all that hear, "you have cancer" that you seek more opinions! Lesion #1 (index): PI-RADS v2.1 score 4, lesion measuring 10 mm centered at the right mid/apex posteromedial peripheral zone; findings equivocal for extraprostatic extension; no evidence of seminal vesicle invasion; The low ADC value in this lesion increases the likelihood of Gleason grade group 2 or higher. Got the fiducials placed, the Space-OAR gel placed, mold made, and had the pre-treatment MRI and CT Scan. Through the AHN Cancer Institute, you benefit from personalized treatment in your community, close to home, from your dedicated care team. At the Breast Cancer Program at the Johns Hopkins Kimmel Cancer Center in Baltimore, MD, a second opinion requires only that you or your doctor send us your pathology slides, key medical records and signed paperwork requesting the opinion. The majority had lower risk tumors and clinical staging of 1 40% sought second opinions with about half having more than one reason Men seeking second opinions tended to be younger and better educated citing the need for more information as their reason. Accessibility - PI-RADS for this lesion = 4/5 One to a 3+4=7 and the other to a 3+3=6. While the size of an enlarged prostate will influence the extent of urinary symptoms, men may experience a range of urinary symptoms. Radiation oncologist of same group of doctors says to do IMRT (using Rapid ARC program) as precautionary treatment, regardless of PSA scores. According to the study, one in every 600 diagnoses showed mistakes.This study only addressed major changes in diagnoses, such as a diagnosis of cancer being reversed to no cancer, says Johns Hopkins pathologist George Netto, M.D. I have posted here before, now with an update. 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. Low volume post-void residual urine is present in the bladder. Benign Processes: He is the past president of the International Society of Urological Pathology. 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. However, something is driving my PSA. Lesion 2: Right mid anterior transition zone. * Membranous urethral length: 1.2 cm 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. Getting a Second Opinion The best time to seek a second opinion is before you start treatment. All views would be appreciated. Hello everyone. My strong preference would be to do FLA again and monitor. It got discussions started and questions answered. I've had what I would consider a fluctuating PSA since first tested in November 2018. A second opinion is part of the education process that is critical for many cancer patients. Prostate Cancer | Johns Hopkins Brady Urological Institute Advances in our understanding of breast cancer have opened up new treatment options or clinical trial opportunities, including targeted drug therapies and tissue-conserving procedures proven to greatly reduce pain and nausea. 7: Prostate, left lateral apex HMO members may also be discouraged from trying expensive treatments that have only a small chance of success, even if that chance is real. Obtaining a second opinion on your pathology report is no different than getting a second doctors opinion, it is a must for all of us. Here's what JH says (same lesion). Sometimes, you may find out about treatment options you didnt know were available. If pain is present, a digital rectal examination will reveal hard areas. After a little experimenting I have been able to achieve a partial erection. lesion. 2nd opinionBone Scan:"Mild increased activity is seen in the right symphysis corresponding to the abnormalities on the prior PET/CT examination. 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. Note respondents were able to choose more than one reason. Are considering a treatment that involves significant risks, such as surgery. And thanks again for making this such a great support group! Time moves fast when dealing with cancer, but Doctors dont. We are vaccinating all eligible patients. Future study is needed to determine when second opinions contribute to increasing the value of cancer care. Treatment options include immunotherapy, This is not true. 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. 6: Prostate, left medial base I'm Gleason 3+4=7, and I believed only 2 cores tested positive. A doctor at MSK can collaborate with another doctor to offer support and help ensure the best outcomes. Men often seek second opinions from urologists before they initiate treatment for their newly diagnosed prostate cancer. Masks are required inside all of our care facilities. The urologist offered surgery and radiation as options on 3/10 when we met. Reasons for obtaining a second opinion from urologists. FOIA I worked out every day. I was disappointed that only TRUS was being used, but I did find out that this was for screening only and IF you pass screeningthey use MRI guided biopsy for post-ablation follow up. Am I missing anything? Had third MRI in July 2019 this time at Mayo which I believe does a better job than SMIL. 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. Two weeks later I meet with my Johns Hopkins Dr. Patient preferences and urologist recommendations among local-stage prostate cancer patients who present for initial consultation and second opinions. 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. When first diagnosed with prostate cancer, your PCP will generally refer you to a urologist for a biopsy. 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." 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. Find more COVID-19 testing locations on Maryland.gov. Dont Miss: New Treatments For Stage 4 Prostate Cancer. Get a Second Opinion * Seminal vesicle invasion: None. 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. Dont Miss: Can Prostate Problems Cause Burning Urination, Why Prostate Cancer Survivor John Shearron Thinks Its Important To Do Your Research | PCRI, Prostate Cancer Pathology in 2021 | Jonathan Epstein, MD | PCRI 2021 Conference, Johns Hopkins Prostate Cancer Second Opinion, treat rare and complex conditions through breakthrough fetal procedures, Function Of The Prostate Gland And Seminal Vesicles, Best Treatment For Intermediate Prostate Cancer, How Old Can You Be To Get Prostate Cancer, New Treatments For Stage 4 Prostate Cancer, Prostate Radiation Treatment Side Effects, Can Prostate Problems Cause Burning Urination, Prostate Cancer Spread To Skull Prognosis, Life Expectancy Stage 4 Prostate Cancer No Treatment, Diagnostic Procedures For Prostate 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. A second opinion can help you make an informed, confident decision about your medical care. Just took time off and then life happened.Thanks in advance for the insights. In the rare chance a baby needs highly specialized care, the team at Johns Hopkins is available to treat rare and complex conditions through breakthrough fetal procedures. 3. 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. 4 Get a Second Opinion Dr. Jonathan Epstein explains the benefits of getting a pathology second opinion At Johns Hopkins, you can feel confident knowing our multidisciplinary cancer clinics combine the very best resources and specialists all within in a single location for a highly coordinated experience that delivers exceptional care while conserving time, money and energy. Is there such a thing as having a team that isnt equipped with the best equipment nor the most experienced radiologists? In severe cases, a catheter may be required to relieve the symptoms. A small early-stage clinical trial found that a carefully selected group of patients who responded remarkably well to chemotherapy could skip surgery altogether. PI-RADS v2 score: 5. Prostate volume: 17.58 cc I just turned 71 in February. I've been on AS since April 2016. The peripheral zone has a patchy signal pattern. Are you sure you want to block this member? has now confirmed this assumption through a careful retrospective analysis of data from > 450 men whose records could be identified in the SEARCH database, all of whom received surgical treatment for Gleason 8 to 10 prostate cancer. 9: Prostate, left anterior MRI lesion We will give that a shot and see how it turns out. And just this week, 1 YEAR post treatment, it is .46. Some men may have an enlarged prostate but not notice it. Video consultation and written report from your expert. 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. * 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. I also changed my diet to plant based food, started juicing, and started taking supplements (think Turmeric, Green Tea, etc.). Johns Hopkins second opinion - nothing found. I am unfortunately "officially" joining the club after getting my biopsy results today. I am at that critical juncture in which I at least need to formalize a plan, select a doctor/facility to work with, and continue my testing to make sure I have what I think I have. Some men will have a very enlarged prostate, whereas others will have a mild enlargement. 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. Rectal cancer.A small trial that saw 18 rectal cancer patients taking the same drug, dostarlimab, appears to have produced an astonishing result: The cancer vanished in every single participant. PELVIC LYMPH NODES: No adenopathy. The review process normally takes several days, after which we will send your slides and other materials are returned. But you have to do both. They want him to start radiation 25 sessions and chemo pills of Casodex 50 mg 28 pills. Second Opinions & Consultations - Johns Hopkins Pathology DRE is always normal. My girlfriend lives 2 blocks from the Emory Proton Clinic.We prayed on it and overthought the crap out of it. 3T MRI with coil is done initially, along with a TRUS biopsy. Dr. Erick Walser at University of Texas Medical Center. 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. Good Morning Brothers- * Extracapsular extension: None. This is why the prostate is important to the body. 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. * Size: 1.1 cm * Extracapsular extension: Possible involvement of the anterior And 2 cores from left apex of 3+3=6 with 10% involvement. Get a Second Opinion What can a second opinion tell me? Medical record collection from doctors and hospitals. I had FLA done after first biopsy which staged me at 3+4 = 7. Unbelievable that this happened!!! (I must say that those low numbers concern me a bit.) However, there are other cases when a second opinion results in a very different diagnosis or set of treatment recommendations. Grade Group: 1 doi: 10.1136/bmjopen-2020-044033. So, Radiation Oncologist prescribed Cialis 5mg, daily. Especially opinions other than those of the first Urologist you see. I am also doing a vegan diet with additional complementary substances. THANKS! This urologist can get you in for surgery next week. !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. Using the Bullet Volume gives you gland of 25.55. -------------------------------------------------------- Wondering if any of the "gurus" here want to take a stab at looking at this and see if they agree that it says what I think it says (I will be following up with doctor(s) to get their opinion, and I waive all HIPAA rights by allowing this to be seen). Further, the two tumors in question have not really changed much in size for more than 2 years. Now, though, encouraging animal data and preliminary studies in human patients are making some doctors feel optimistic. In severe cases, a catheter may be required to relieve the symptoms. -------------------------------------------------------- The local pathologist read the biopsy and said 3+4=7 10% pattern 4 for both lesions. PREVIOUS MRI RESULTS (LOTS of them) Methods: I have actually had a second opinion a while back from Dr. Bush. 3: Prostate, right medial apex Second opinions from urologists for prostate cancer: who gets them, why, and their link to treatment . 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. 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. Younger men also sought the 'best' doctor. 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 won't be offended, and they may even be able to recommend a specialist for you to see. 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. Many thanks for that. I also had my PTEN test by META-MARK ( I don't have much to say about how I was treated by MM, but I won't be using their services again). Medical record collection from doctors and hospitals. Patients may experience a fever or chills as a result of the infection. Both Drs and nurses knew what they were doing and had lots of experience. Im also wondering why no one has scheduled me for MRI to see what biopsy missed. The Stanford Medicine Online Second Opinion program offers you easy access to our world-class doctors. Thanks to all of you for sharing! Allow yourself the time to seek multiple opinions. - Perineural invasion is present Caused me to bleed heavily. 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. prostate volume). A enlarged prostate can also cause blockages in the urethra. Instead, I did my homework. You May Like: Best Treatment For Intermediate Prostate Cancer. There is no evidence Johns Hopkins Precision Medicine Center of Excellence for Prostate Cancer, Schaufeld Program for Prostate Cancer in Black Men, Read about the latest prostate cancer discoveries by our world-renowned researchers, Learn more about prostate cancer in our health library, Watch: What to expect during your post-surgery hospital stay. 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. Maybe lycopene and pomegranate have helped. One core had 5%, one 20%, and one 40%. How long do you have left? The linear amount of tissue with carcinoma is 23 mm More medical freakouts. Another type of prostate issue is chronic prostatitis, or chronic pelvic pain syndrome. Second opinions from urologists for prostate cancer: who gets them, why, and their link to treatment . Dr also stated he was able to totally spare one of my nerves, but to get margin may have damaged one. Being in Wisconsin, my insurance gives me the option of two hospitals to manage me. Prostate Cancer | Johns Hopkins Medicine Seminal vesicles are normal. Thank you for your participation! One of the problems with second opinions is that insurers may not cover the expense. Us Too Prostate is a great club and many of you have helped me a lot already. ZERO - The End of Prostate Cancer Support Community. * Seminal vesicle invasion: None. Yet none of my doctors ever mentioned it! The PSA Doubling Time parallels my Urologist Doubling Time (I keep changing Uro until I find one who makes sense)! Is it done through my doctor or do I do it myself with sending CDs of the MRI? P/ 310-827-7707 | F/ 310-574-4002 | MAIL@PROSTATEONCOLOGY.COM. 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. It worked great (with negative pathology of the tissue) and fixed a lot of nasty symptoms and risks. This condition causes pain in the lower back and groin area, and may cause urinary retention. Same with the amount of how much pattern 4. A new study by researchers at the Johns Hopkins University has found that . Does this also include HIFU, Cryoablation? Thank you for your understanding and cooperation. My diagnosis is T2c, Gleason 7 (3+4). Some men have minimal or no symptoms at all. With no travel needed and no red tape, its easy to get a second opinion, all from the comfort of your home. You may be concerned that the cancer will grow rapidly out of control before you are able to get a second opinion. Pathology Second Opinion-J.Epstein,M.D. Pathologist-Johns Hopkins FLA DONE AT FIRST BIOPSY G- 7. Our gynecologic pathology team can also help determine if the tumor is localized or has metastasized from another region of the body. They told me to expect a spike in my PSA sometime in the future, and they told me that studies are showing that a slow, steady decline in PSA is often indicative of superior results (whatever that means. I want to insure that the Imaging was read correctly and nothing was overlooked or missed. Overall, obtaining second opinions was not associated with definitive treatment or perceived quality of cancer care. No two cases of prostate cancer are alike and an accurate diagnosisis critical to developing the best treatment plan. I have had a CT of the pelvic area - negative and a whole body bone scan - negative. 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. Some specialize in reading only slides that come from a specific organ while others are generalists who read many different pathology slides from many different organ systems. - 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 They agreed with the PI-RADS 4. When I was diagnosed I really thought that I will live only 2 years. It works. Tumor Quantifications: ORIGINAL MRI REPORT (local radiology group): * Gleason Score: 3+4 (4 of 6 specimens), 14 specimens taken Enter the last name, specialty or keyword for your search below. 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. Also, Oncotype subsequently invalidated my results because they found in the history that I had a prior FLA. 2015 Feb;115(2):188-97. doi: 10.1111/bju.12665. I have selected Focal Laser Ablation as my future (soon) treatment. A total of 2386 men responded to the survey (adjusted response rate, 51.1%). Benign Processes: Potentially inaccurate results can lead to selection of the wrong type of therapy. I have searched the country for intervential radiologist that perform FLA on the prostate. Six weeks later I have the biopsy in his office and a week later I get the results. of tumor in the rectal prostatic angles. With no travel needed and no red tape, its easy to get a second opinion, all from the comfort of your home. )As for side effectsI occasionally have some urgency/hesitancy having to pee. 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.