Thanks for Everyone's Help, And thanks again for making this such a great support group! I was on disability from work the entire time (not that I was disabled, but as a pilot, I couldn't very well work and get treatment at the same time. Another DRE that results in identifying that my prostate is enlarged, but cant find and nodules. It got discussions started and questions answered. Secondary Gleason grade: 4 I just received a second opinion report from Johns Hopkins. Reinterpretation of imaging scans and lab tests. Here are seven tips for seeking second opinions for prostate cancer: Before getting a second opinion, its important to know your stage of prostate cancer. I am unfortunately "officially" joining the club after getting my biopsy results today. 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. Surgeon wants next PSA in 3 months. Background: Urologists at the Johns Hopkins Brady Urological Institute can make the difficult process of deciding on a treatment plan easier. Best practices dictate that you obtain a second confirmatory pathology evaluation. 2. transition zone. Associated fees may be incurred up to $1,800 in a minority of more complicated cases requiring special studies. Family history of prostate cancer. The biopsy took 12 cores, two from each lesion area and 8 randomly. I have completed all that is necessary to enter Johns Hopkins Second opinion and PTEN test program. 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. How to Get a Second Opinion Our team at Johns Hopkins has a dedicated service to interpretation of brain tumors and render second opinions on a daily basis. An accurate diagnosis is essential to ensure the most effective treatment. I assume the data on gleason scoring is much more robust/reliable than genomics as it has been around longer and used more extensively. EDI am now 52 and not quite functioning like I did 4+ years ago. You May Like: Best Treatment For Intermediate Prostate Cancer. This fluid causes the prostate to swell and cause a number of bladder-related symptoms. Find more COVID-19 testing locations on Maryland.gov. Prostate cancer is a slow growing condition. 1.Rebecca L. Siegel, Kimberly D. Miller, and Ahmedin Jemal, Cancer Statistics, 2019 CA Cancer J Clin. There are also many reasons why you may want to seek another opinion during the course of your cancer care. Prostate cancer is the second-most diagnosed cancer in American men. Who should I contact at Johns Hopkins to get a second opinion on a biopsy? The other samples produced 4 more positive cancer cores for a total of 7 of 12 positives. Types of questions that pathologists often address in our second opinions: All rights reserved. 10: Prostate, right anterior MRI lesion I am doing one in 6 weeks, regardless. If youve received a new diagnosis or arent seeing results from your current treatment plan, a second opinion can help you move forward with confidence. poorly defined margins and intermediate to low T2. Get a Second Opinion What can a second opinion tell me? Please enable it to take advantage of the complete set of features! Details are here: 4, Dr. Jonathan Epstein explains the benefits of getting a pathology second opinion. They are not objective. 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 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. MY THOUGHTS AND ANYTHING DOCTOR NOTED: But you have to do both. Any score above 55 has a greater than 50/50 chance of finding clinically significant cancer. Men who sought second opinions because they were dissatisfied with their initial urologist were less likely to receive definitive treatment (odds ratio, 0.49; 95% confidence interval, 0.32-0.73), and men who wanted more information about treatment were less likely to report excellent quality of cancer care (odds ratio, 0.70; 95% confidence interval, 0.49-0.99) compared with men who did not receive a second opinion. Although a large proportion of men with localized prostate cancer obtained a second opinion, the reasons for doing so were not associated with treatment choice or perceived quality of cancer care. You receive a secure, private online consultation without leaving home. Your doctor is not sure what is wrong with you. 1. Have been diagnosed with a serious or rare health condition. Ask us questions on this webpage. 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. Your doctor is not a specialist in your type of . (I must say that those low numbers concern me a bit.) Please don't hesitate to make any observations or ask questions. And should I treat prostatitis before FLA? 4. I had two no-risk, non-invasive tests: a Free PSA with an adverse score of 9% and a PCA3 test with a disappointing 41. - DCE = (+) So, I asked the Radiologist if she will schedule one for me. I guess TWO national centers of excellence are better than one? Over kill and redundancy I know, but it's my money, my prerogative. A enlarged prostate can also cause blockages in the urethra. The Johns Hopkins University, The Johns Hopkins Hospital, and Johns Hopkins Health System. About 80 percent of prostate cancers are diagnosed at a localized stage, which means that the cancer hasn't spread outside of the prostate. 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. * IF ANYONE reading this doesn't believe in the value of MRI first and targeted biopsy next then take note that my systematic biopsy cores showed 0 positive in 8 cores and my MRI guided core samples were 6 for 6 being positive! Grade Group: 1 I have had a CT of the pelvic area - negative and a whole body bone scan - negative. This is a PI-RADS 5 lesion in It is OK to be scared. Avoiding obsolescence in advanced prostate cancer management: a guide for urologists. I talked with Dr. Epstein who expressed Johns Hopkins' conservative views to not underestimate GS 6 and to consider surgery and/or radiation that have been used successfully for many years in saving lives. First of all we would like to emphasize that the health of our employees, our patients and their relatives is our first priority. Hillen MA, Medendorp NM, Daams JG, Smets EMA. Luckily, his report co-coincided with the original QDx report. There is no bony or bulky nodal disease in the pelvis If they have an enlarged colon, their physician can perform a TURP procedure. Greetings gentlemen! Thanks, 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. A small early-stage clinical trial found that a carefully selected group of patients who responded remarkably well to chemotherapy could skip surgery altogether. In 2006 my PSA was .6. You have a rare or unusual cancer. Need guidance choosing from multiple treatment options. It is OK to be overwhelmed with info. However, that information will still be included in details such as numbers of replies. I want to insure that the Imaging was read correctly and nothing was overlooked or missed. 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. 3. You Sought Johns Hopkins second opinion of pathology slides. (Scores above 55 have a greater than 50% chance of finding clinically significant cancer on a biopsy) The biopsy showed 2 or 3 cores containing HG PIN but no cancer. Thanks for considering. Masks are required inside all of our care facilities. Low post-void residual volume is Thanks, BigD. Especially opinions other than those of the first Urologist you see. Doctors can review their peers treatment suggestions and explain why they agree or disagree. Some men will have a very enlarged prostate, whereas others will have a mild enlargement. Noted that some don't even include on report and should be looked as something to note but not obsess about. 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. Allow yourself the time to seek multiple opinions. Some docs say clean up the prostatitis while others tell me to avoid overuse of Cipro as it loses its effectiveness over time. An acute bacterial infection can cause a burning sensation. Want confirmation about a diagnosis or treatment. Now, I would like to send Radiology for a similar review. PREVIOUS MRI RESULTS (LOTS of them) Prostate, right medial base: However, he also said it's treatable even at a 2cm size and the transition zone is a favorable spot. They seem to think it'll do the trick.I feel great and I am glad I chose this treatment path. Prostate cancer is an Good pathology readings require experience and a high level of expertise. Dr. Jonathan Epstein of Johns Hopkins University Hospital. 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. If you have received a diagnosis or recommendation for treatment and want another opinion, our service can help you make a more informed decision. Benign fibromuscular stroma; no prostatic glands are identified IMPRESSION: Even if someone is being seen at a different academic center, the trials and other treatment options that we offer here may be different. Symptoms include leaking and discomfort. Reasons for obtaining a second opinion from urologists. Thank you! At this time, I am leaning towards Active Surveillance or FLA. AS would be my choice, except that a total of three lesions, on both sides of Peripheral Zone, makes this controversial. Not all cancers are the same and not all treatment plans are absolutely clear. 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. Cancer 2017;123:1027-34. 6. 3. I am 58 and in very good health otherwise. You May Like: Prostate Cancer External Beam Radiation Side Effects. 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. We have a consult on Friday with the 1st opinion doc to review all tests. A second opinion can help you make an informed, confident decision about your medical care. The James Buchanan Brady Urological Institute, Masks are required inside all of our care facilities, COVID-19 testing locations on Maryland.gov. Diffusely abnormal appearance of the prostate may reflect prostatitis, which can obscure underlying prostate cancer. Just had my appointment today and they are pleased with the results, so far. Surgery seems like overkill for me with too many risks for incontinence and permanent ED, am I overlooking something? 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. How long do you have left? Us Too Prostate is a great club and many of you have helped me a lot already. 2020 Jul 21;19(1):112. doi: 10.1186/s12904-020-00619-9. 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). My profession for forty years was health actuary consultant, so I have a pretty fair understanding of health data, outcomes, and risks. 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. Research was mixed on PINS, but in those days, many doctors saw them as likely to develop into cancer. * Sloan only sent partial cores, slides 1 and 4. Jonathan Epstein, MD received his doctorate from Boston University. He schedules appointments with a Radiologist and two local surgeons. Second opinions offer different things in different circumstances, Dr. Matasar says. prostate volume). If they have an enlarged colon, their physician can perform a TURP procedure. (TZ) One suspicious area - lesion size: 2cm x 1.4 cm Some men have minimal or no symptoms at all. * Should still go for a Johns Hopkins second opinion on the pathology or is that overkill since the first one was done at MSKCC? 6 A study at the Johns Hopkins Health System found it was 3.4 times more common in Black Americans than in White Americans. 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. Finally, things are set and I know what is going to happen. Radiation oncologist of same group of doctors says to do IMRT (using Rapid ARC program) as precautionary treatment, regardless of PSA scores. For this study, published in the journal Cancer, 2386 men in the greater Philadelphia area, who were diagnosed with prostate cancer between 2012 and 2014, responded to survey questions. Breast cancer.A new study suggests surgery may not always be necessary for all breast cancer patients. Men often seek second opinions from urologists before they initiate treatment for their newly diagnosed prostate cancer. Some men may have an enlarged prostate but not notice it. How could this compare using only partial slide re-reading? 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. About this time, I started reading this forum and my ignorance starts going away. They basically said it didn't matter. It may be a new cancer, but it is more likely a recurrence since it is really near the ablation zone. Many thanks for that. * Size: 1.1 cm Enter the last name, specialty or keyword for your search below. A patient suffering from an enlargement of the prostate may have pain in his lower abdomen and genitals. advising or treating it. Confirm biopsy and imaging results with centers of excellence before making any final decisions. Conflicting Prostate Biopsy OpinionsWhat to Do? SO. 2018 May;115:133-138. doi: 10.1016/j.urology.2018.01.048. A second opinion is a review of the cancer diagnosis and the treatment recommendations of the physician who is treating the cancer by another, independent physician. 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. Netto says patients should be proactive in requesting that doctors take another look. Anyway, would appreciate knowing how to contact Johns Hopkins. 4/16 3T MRI performed (reports/re-reads below) Another type of prostate issue is chronic prostatitis, or chronic pelvic pain syndrome. 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 . I wanted to keep my options open. I had a very bad experience with an incompetent nurse that did a catheter change. * Perineural Invasion detected Following application of the relevant exclusion criteria, 2365 respondents remained in the analytical cohort. I will say, the people I dealt with at Johns Hopkins were extremely nice and professional. You May Like: Sbrt Radiation Therapy Prostate Cancer. About 80 percent of prostate cancers are diagnosed at a localized stage, which means that the cancer hasnt spread outside of the prostate. Learn MoreFor more information about pathology second opinions, visit pathology.jhu.edu or call 877-546-1872. Olver I, Carey M, Bryant J, Boyes A, Evans T, Sanson-Fisher R. BMC Palliat Care. 2011 Feb;29(1):3-9. doi: 10.1007/s00345-010-0602-y. 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. Benign prostatic tissue MRI RE-READ #1 (well known radiologist, but free advice over phone, but no written report): This has only low-level nonspecific activity with SUV max of 2.05 and may be due to degenerative changes at the symphysis pubis." I have been drinking out of an information fire hose. At Another Johns Hopkins Member Hospital: Masks are required inside all of our care facilities, COVID-19 testing locations on Maryland.gov, Prostate Cancer Treatment: What to Know About Active Surveillance. They hesitated calling it a TARGET LESION, but scored it PIRADS 4. So the pathologist suggested a second opinion. Keep in mind that not all PCPs are knowledgeable about prostate cancer or know the skill levels of all the specialists in the field. Unfortunately, the 12/20/20 PSA reading was higher and that led to an MRI on 2/2/21 when two lesions were discovered. Even at the age of 48, he thought I would be a good candidate for AS. You may be concerned that the cancer will grow rapidly out of control before you are able to get a second opinion. These findings are suspicious for degenerative changes however a subtle/early metastatic lesion cannot be excluded and continued periodic follow-up is recommended." I still have some urgency and frequency issues, but I am not complaining too bad. A patient suffering from an enlargement of the prostate may have pain in his lower abdomen and genitals. Epub 2017 Jun 12. 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. He also said perinueral invasion, but not extracapsular extension. As soon as pathology slides were ready, Emory sent them to Dr. Epstein at Johns Hopkins. Prostate volume: 17.58 cc What are you doing about it? Now its easier than ever to get the answers you need and peace of mind you deserve. 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 . __________________________________________________________________________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. 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? Different institutions have different levels of experience when it comes to analyzing prostate biopsy samples and interpreting imaging results. lesion. Unbelievable that this happened!!! 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. Based on the results, our experts can provide you with an individualized treatment plan before you leave. 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. Several friends rushed towards surgery and now wish they had the information he provides before they decided to go with such care. * Size: 1.5 cm 2 of the 12 samples showed High Grade PIN and one area showed "suspicious for low-grade adenocarcinoma". I've also read that some study's have shown that intraductal may be resistant to hormonal therapy, radiation and/or chemo. Nor did I have any idea that the 1 core had 20% involvement and <5% pattern 4 involvement. 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. I am also doing a vegan diet with additional complementary substances. The PSA Doubling Time parallels my Urologist Doubling Time (I keep changing Uro until I find one who makes sense)! I have completed an exhaustive research effort on Prostate Cancer and PCa treatments. Dont Miss: New Treatments For Stage 4 Prostate Cancer. While I have three lesions, they are small and, without 3T mp MRI, might not have been discovered. 2. -------------------------------------------------------- There is no one-size-fits-all treatment for prostate cancer. But, after 4 drinks or if I'm tired/jet lagged I find that sleep is more appealing than sex. I was confident I was making the right decision. As some of you may know, I am a moderator for a support group for men on active surveillance for low-risk prostate cancer. 3 months has passed, and its time for a PSA and a plan to have an MRI. For cancers that are less common, second opinions can offer more treatment options. BJU Int. 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. present in bladder. So now things are getting exciting. 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. And, even working in a fairly technical field myself, I was amazed at the technology and precision of that Proton Machine. I'm turning 58 in one week. Find more COVID-19 testing locations on Maryland.gov. 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. Two 1cc tumors, gleason score 3+4 each, one in each lobe. Compared with other men, African-American men and men with a family history of the disease are at higher risk of developing prostate cancer. Of course, my old school Urologist recommended surgeryHe, of course, knew the best robotic surgeons around.Anyway. 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. 2. There are also some cases of the test showing no depletion but being wrong. 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 doctor at MSK can collaborate with another doctor to offer support and help ensure the best outcomes. Every year I got a PSA and DRE during my annual physical. Y'all are in my prayers! Even at the age of 48, he thought I would be a good candidate for AS. 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. Hello everyone. Extracapsular extension: The prostatic capsule is preserved. Prostate, right anterior MRI lesion: Mayo's report came back with the same PI-RADS 4 with the wording that it was more conspicuous but unchanged. When people recommend going to a Center of Excellence, believe them. It can: Confirm your original diagnosis and treatment plan Give you more detail about the type of breast cancer you have and stage it's in. 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. - Johns Hopkins Medicine -- Get a Second Opinion Fear, confusion and uncertainty set in. Secondary Gleason grade: 3 Which Patients Report That Their Urologists Advised Them to Forgo Initial Treatment for Prostate Cancer? Epub 2010 Oct 20. Prostate, left lateral base: If I am rested, I find that I am more ready than if I am not. Radhakrishnan A, Grande D, Mitra N, Bekelman J, Stillson C, Pollack CE. So, I believe I made the right choice. Results: Everything seems to be on track to remove the cancer and be cured! Seeking second opinions is becoming standard practice, and it is mandatory at Johns Hopkins. You May Like: Prostate Radiation Treatment Side Effects. IMPRESSION: We can help with your case. 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. It will be interesting to see, I think. The best protection for cancer patients who are Health Maintenance Organization members is to seek a second opinion even if she or he has to pay for it. It has been 2.5 years and the PSA has still not doubled as well. But if I include the 3+3=6 cores then 4 cores tested positive and that moves me into the basic teal category and no longer a strong candidate for AS. 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. Overall PIRADS Score: 2/5 * Gleason Score: 3+3, Slide 1 (vs. Sloan's 3+4) * Location: Left, anterior, base to apex, transition zone 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. After a little experimenting I have been able to achieve a partial erection. And it is OK to have paralysis by over-analysis. If the enlarged prostate is not completely removed, it will shrink. The main purpose of the prostate is to produce semen, a milky fluid that sperm swims in. Following his residency in anatomic pathology at The Johns Hopkins Hospital in Baltimore, Maryland, and a fellowship in oncologic pathology at Memorial Sloan Kettering Cancer Center in New York., he then joined the staff at The Johns Hopkins Hospital and has been there his entire career. Dont Miss: Screening For Prostate Cancer Icd 10. PCPs can be a great help to navigate the medical marketplace and provide an unbiased voice of reason when it comes to making hard choices. He wants me to begin the ADT around 5/1. Got the fiducials placed, the Space-OAR gel placed, mold made, and had the pre-treatment MRI and CT Scan. Read Also: Long Term Side Effects Of Brachytherapy For Prostate Cancer. Anyone with insight into this and advice? By basing a treatment I had my first of those 2 PSA tests last week and it dropped to 4.77. Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. Here's what JH says (same lesion). Just got my pathology results. A week later had catheter removed and had no bladder leakage problems. Steve, Groucho was wrong when he said "i don't want to belong to any club that would have me as a member." My goals are to control PCa, to minimize side effects, and to keep options open in the future. Seems like a simple request. Day 7 after surgery I took my last pain pill. So, Radiation Oncologist prescribed Cialis 5mg, daily. Therefore, the value of these second opinions remains unknown. Are you sure you want to block this member? With no travel needed and no red tape, its easy to get a second opinion, all from the comfort of your home. 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. The results of Oncotype came back and it was a bad report. intricate disease and not all doctors have the same amount of experience 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). Some pathologists have more experience than others. You think your doctor is underestimating how serious your cancer is. Oncologist. 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.

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