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An acute bacterial infection can cause a burning sensation. decision on a single medical opinion or the first appointment you get, you may 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. Reinterpretation of imaging scans and lab tests. The Johns Hopkins Brady Urological Institute is known around the world for its expertise in diagnosing and treating urologic conditions. 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 . Careers. They want him to start radiation 25 sessions and chemo pills of Casodex 50 mg 28 pills. Second opinions offer different things in different circumstances, Dr. Matasar says. * Both Sloan and Johns Hopkins admit that large discrepancies are unusual, yet both stand by their opinions. 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. 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 wanted to keep my options open. 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. Overall PIRADS Score: 2/5 His second opinion just came back. I also learned a lot more about the high undisclosed risk of side effects of various treatment plans. Conclusions: A diagnosis is usually reached within 3-5 days of your slides' arrival at Johns Hopkins. It will be interesting to see, I think. Adenocarcinoma: I will say, the people I dealt with at Johns Hopkins were extremely nice and professional. Comments appreciated, He also said perinueral invasion, but not extracapsular extension. In the mean time my PSA was movingno longer static, but never back up to 6. 2020 Jul 21;19(1):112. doi: 10.1186/s12904-020-00619-9. Dr also stated he was able to totally spare one of my nerves, but to get margin may have damaged one. Four weeks after a radical prostatectomy for prostate cancer, he was back in the pool. Prostatic Adenocarcinoma Let me know what everyone thinks if you see anything interesting or of note here or just have some advice. * PIRADS v2 Score: 3 Ex-Uro wanted to do biopsies and keep doing them until we find "it", even though he didn't know the size of the prostate nor had he ruled out prostatitis. Overall, obtaining second opinions was not associated with definitive treatment or perceived quality of cancer care. not hear all the viable treatment options or receive the most up to date The linear amount of tissue with carcinoma is 23 mm What are your opinions of what that is, and where to get it? 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. Hello everyone. This is why the prostate is important to the body. We surveyed men who were diagnosed with localized prostate cancer in the greater Philadelphia area from 2012 to 2014. AHN patients have unprecedented access to the Johns Hopkins Center for Fetal Therapy. Hopkins states that the one positive core (10% G6) was visualized by the MRI, so I am hoping that this increases our chances of making it through the screening process. Thank you for your understanding and cooperation. Sought Johns Hopkins second opinion of pathology slides. Best practices dictate that you obtain a second confirmatory pathology evaluation. 1st opinion. Anyhow, as for treatment, yesterday I met with a Dr. William Wong at Mayo Phoenix. It has been 2.5 years and the PSA has still not doubled as well. (The pathology report from Cedars-Sinai kept my diagnosis at 3+4, but a second opinion at Johns Hopkins upgraded me to 4+3.) It is OK to not understand all the terminology. My first PSA was 8.03. As soon as pathology slides were ready, Emory sent them to Dr. Epstein at Johns Hopkins. 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. I had the MRI in April 2021 and it showed a PI-RADS 4 lesion. There were several areas of interest - but nothing in seminal vesicles, lymph, or bones. OTHER: None. Check Biopsy and Imaging Results for Accuracy. PROSTATE LESIONS: Prostate dimensions: 4.1 x 2.8 x 3.4 cm Would it be rational to stay on AS until biopsy results show a higher volume of PCa for sampled cores (i.e. Not all cancers are the same and not all treatment plans are absolutely clear. * Location: Left, anterior, base to apex, transition zone 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. Before Our collaborative processes also extend to our colleagues at Johns Hopkins Medicine, a world-wide leader in cancer research. With that alone, I would likely be a candidate for continued Active Surveillance. :) The James Buchanan Brady Urological Institute, Masks are required inside all of our care facilities, COVID-19 testing locations on Maryland.gov. I could not get a definitive answer from them on how much, how many cells, or any information. A PSA test at time of biopsy revealed my PSA had risen to 6.5. 5. Ask your PCP to refer you to several different types of treating doctors before making a treatment decision. We experienced information overload and decision/analysis paralysis. Hello. A total of 2386 men responded to the survey (adjusted response rate, 51.1%). Surgery seems like overkill for me with too many risks for incontinence and permanent ED, am I overlooking something? 2 of the 12 samples showed High Grade PIN and one area showed "suspicious for low-grade adenocarcinoma". 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). PSA had increased to 5.4. 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. Family history of prostate cancer. Anyway, would appreciate knowing how to contact Johns Hopkins. My experience at Johns Hopkins was awesome. Diffusely abnormal appearance of the prostate may reflect prostatitis, which can obscure underlying prostate cancer. Results: Avoiding obsolescence in advanced prostate cancer management: a guide for urologists. Blessings. Instead, I did my homework. 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. Without your support, I could easily have subjected myself to random biopsies that are risky, don't do a good job of finding lesions, and can mess up the clarity of the prostate for an MRI. Getting a second opinion can sometimes lead to a complete change in diagnosis (such as cancerous to benign or vice versa) in non-cancerous growths, inflammatory disorders, infections, cancer and other conditions. So, I believe I made the right choice. 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. Thanks, Dr. Albert Chang at UCLA appears to be the best in the biz for high dose rate (HDR) focal brachytherapy. Following application of the relevant exclusion criteria, 2365 respondents remained in the analytical cohort. They are not objective. Benign prostatic tissue 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. I was on active surveillance after a FLA procedure done in 2018. -------------------------------------------------------- Patient-Driven Second Opinions in Oncology: A Systematic Review. After much discussion we both agreed that surgery was my best option and that he would do it at the end of July. The results of Oncotype came back and it was a bad report. 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. It hasn't let me down. Find a doctor at The Johns Hopkins Hospital, Johns Hopkins Bayview Medical Center or Johns Hopkins Community Physicians. The researchers also found that patients who obtained second opinions because they wanted more information, were seeking the best doctor, or had been encouraged to do so by family or friends were more likely to undergo surgery. It's a bit confusing since most experts now don't consider Gleason 6 to be a true cancer, so did i test positive in 2 cores or 4? Therefore, the value of these second opinions remains unknown. So, I made an appointment at Emory Proton Center (Atlanta, GA) and got their opinion. Your email address will not be published. Hi All, Based on this forum, Im very lucky for this outcome. You May Like: Sbrt Radiation Therapy Prostate Cancer. Read Also: Long Term Side Effects Of Brachytherapy For Prostate Cancer. Slight BPH findings. 4. A patient suffering from an enlargement of the prostate may have pain in his lower abdomen and genitals. Lesion 2: Right mid anterior transition zone. 1st opinion"PYL PSMA PET/CT scan demonstrating foci of moderate to intense uptake in the prostate gland consistent with known prostatic cancer. peripheral zone signal intensity on T2-weighted images. Call us with any questions: 410-955-2405, ext. I have searched the country for intervential radiologist that perform FLA on the prostate. By seeking second opinions and hearing the benefits and drawbacks of a range of treatment options for your specific stage, you will be more equipped to make educated decisions. Since I have gotten so much out of this forum, I thought Id provide my story to help others. I understand that patient privacy is a priority (I'm actually a privacy lawyer), but surely there are patients who would give consent and be happy to talk with a prospective patient about their experiences? Anyone else encounter something like this? Diffusely decreased Anything I am overlooking or need to add to my list of considerations? I was confident I was making the right decision. Obviously the Covid 19 issue is playing a part in all of our decisions. - High grade prostatic intraepithelial neoplasia (HGPIN) They won't be offended, and they may even be able to recommend a specialist for you to see. In adjusted models, obtaining a second opinion was not associated with receipt of definitive treatment . The researchers did not include more minor errors in rating how fast-growing and how advanced a cancer was. 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. With world-renowned expertise, multidisciplinary specialists and the latest data, we partner with you to make informed decisions about managing your prostate cancer. Metastatic disease considered less likely for this pattern. 3. 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. Different institutions have different levels of experience when it comes to analyzing prostate biopsy samples and interpreting imaging results. 2015 Feb;115(2):188-97. doi: 10.1111/bju.12665. 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. I would appreciate hearing from that 2.8% out there who have an intraductal component. This may include imaging, blood tests, prior treatment, and pathology reports. FYI-We are also considering the trial at Princess Margaret Hospital in Toronto. Urology. 6 cancers that are the toughest to diagnose are prostate, bladder, head and neck, soft tissue, skin and lymph system. At the Johns Hopkins Medical Institutions, he is Professor of Pathology, Urology, and Oncology the recipient of the Reinhard Chair of Urological Pathology and Director of Surgical Pathology. If pain is present, a digital rectal examination will reveal hard areas. Also Check: Prostate Cancer Stage 7 Treatment. Here are some recent updates: Uterine cancer.Women who use chemical hair straighteners frequently could have a higher risk of developing uterine cancer than women who have never used the products, according to new findings from a national study that has followed nearly 34,000 U.S. women for more than a decade. Im also wondering why no one has scheduled me for MRI to see what biopsy missed. The people were great. 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. Some men will have a very enlarged prostate, whereas others will have a mild enlargement. Future study is needed to determine when second opinions contribute to increasing the value of cancer care. 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. official website and that any information you provide is encrypted Their MRI was more sensitive and found there were actually 2 lesions close together that looked like one on the prior MRIs. 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. Because I had an implant in my ear, they would only give me a 1.5T MRI. Most reputable HMOs can, however, deliver state of the art treatment for most cancers. Even if someone is being seen at a different academic center, the trials and other treatment options that we offer here may be different. Ask your doctor for a copy of your complete medical record. Discover what's to love about Charm City for yourself. Someone advised to always get my PSA checked at the same facility in order to make sure the same protocol and lab is used, is that critical? My involvement is below maximum of 15% of core. Just got my pathology results. In terms of cancer, changes can be from cancer to benign (or vice versa) or from one type of cancer to another, which could have a significant impact on treatment and prognosis. I would feel much more comfortable, if the numbers stay the same, being involved in a recognized Active Surveillance Program. Medical record collection from doctors and hospitals. Can it be salvaged or are the risks of cancer too high? Bladder: Normal. This is often the case when the primary physician advises an expensive treatment. Right mid anterior transition zone (PIRADS 2). My new Dr however didnt order PSA so I asked him for one. First let me just say what so many others have previously stated, the thought of going on this journey alone is frightening, I cant imagine traveling this road alone. After a second opinion from both Johns Hopkins and Stanford, the two 4+3's were downgraded. A biopsy was performed on 2/26. 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. 3 months has passed, and its time for a PSA and a plan to have an MRI. Reasons for getting a second opinion include: You want to be sure you have explored all options. I'm turning 58 in one week. Obtaining a second opinion in Pathology can in a small percent of cases lead to a complete change in diagnosis in a wide range of conditions including non-cancerous growths, inflammatory disorders, infections, and cancer. Our gynecologic pathology team can also help determine if the tumor is localized or has metastasized from another region of the body. 3T MRI with coil is done initially, along with a TRUS biopsy. PMC Second opinions offer different things in different circumstances, Dr. Matasar says. Using an Ellipsoid Volume the dimensions would give you a volume of 20.44. Cancer. At that point I agreed to the TRUS biopsy which I had on October 10, 2020. World J Urol. A second opinion can accomplish a number of things. An acute bacterial infection can cause a burning sensation. 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. LESION 1 HHS Vulnerability Disclosure, Help 2. Tumor Quantifications: I hope my story helps anyone out there just starting the process. Even if someone is being seen at a different academic center, the trials and other treatment options that we offer here may be different. He said that it will improve in the future due to future improvements in the treatments. Another type of prostate issue is chronic prostatitis, or chronic pelvic pain syndrome. Caused me to bleed heavily. More medical freakouts. A 1.4 cm lesion in the left, apex, anterior transition zone demonstrates conflicting T2 and DWI characteristics for PI-RADS classification - an indeterminate lesion. 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). )I contacted Dr Busch (still in Chattanooga at the time) and he called me directly to talk me off the ledge. 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. 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. It is OK to be scared. MY THOUGHTS AND ANYTHING DOCTOR NOTED: For all other cancer appointments, please call: 1-855-702-8222. Prostate, right medial base: PREVIOUS MRI RESULTS (LOTS of them) 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). This has raised some questions on all the scans so far. So I initially thought this makes me a good candidate for AS. 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. We are vaccinating all eligible patients. The review process normally takes several days, after which we will send your slides and other materials are returned. The total number of cores identified is 3 I am doing my own research, but I am curious as to thoughts of the best possible MRI to obtain to give me the best chance at finding something the needle biopsy didnt find. Second opinions are a common practice in any area of medicine that is complex and that has multiple treatment options available. During puberty, the body produces semen in a large number of cases, including enlarged prostate. By choosing the first doctor you speak with to be your treating physician, you may be putting your health in the hands of someone who lacks the expertise to accurately and safely treat your prostate cancer. If pain is present, a digital rectal examination will reveal hard areas. Move ahead to Dec 2020. Prostate cancer is the second-most diagnosed cancer in American men. Suspicion for malignancy left anterior base-to-apex transition zone; And if so, what does being accepted in a AS program look like, do I need to be present at their location? Are you sure you want to block this member? - Prostatic adenocarcinoma, Gleason score 3+4=7 (grade group 2, pattern 4: 10%) involving 2 of 2 cores (medial core: 0.5 mm, 4%; lateral core: 1.5 mm, 10%), 1 mm to the blue inked tissue edge (the closer) )As for side effectsI occasionally have some urgency/hesitancy having to pee. Primary Gleason grade: 3 Assessment categories for this lesion: It can be caused by many factors, including infection and inflammation. Is there such a thing as having a team that isnt equipped with the best equipment nor the most experienced radiologists? Patient preferences and urologist recommendations among local-stage prostate cancer patients who present for initial consultation and second opinions. __________________________________________________________________________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. You're more likely to develop prostate cancers that are more likely to spread. As a result, patients struggle to differentiate bias from fact. 4 Get a Second Opinion Dr. Jonathan Epstein explains the benefits of getting a pathology second opinion Men often seek second opinions from urologists before they initiate treatment for their newly diagnosed prostate cancer. Confounding this, I have read that the different genomic tests can disagree with each other, and that Oncotype is usually a more aggressive finding. Prostate Cancer Grading: -------------------------------------------------------- Im immediately referred to Urologist. * Sloan only sent partial cores, slides 1 and 4. I have actually had a second opinion a while back from Dr. Bush. Your Primary Care Physician referred you to your diagnosing urologist whom you now trust. Cancer ABCs recommends: Johns Hopkins Hospital in Baltimore, Maryland, specifically Dr. Jonathan Epstein. Seminal vesicles and other margins are negative for tumor. Even at the age of 48, he thought I would be a good candidate for AS. The Johns Hopkins University, The Johns Hopkins Hospital, and Johns Hopkins Health System. Your doctor is not sure what is wrong with you. You can call and speak with his assistant at: (410) 614-6330. * Prostate volume: 22 cc Finally, things are set and I know what is going to happen. You feel healthy, you arent in pain, you In those cases, patients are tremendously grateful for having received the advice and encouragement to get a second opinion, Dr. Matasar adds. I'm leaning towards SBRT. Confirm biopsy and imaging results with centers of excellence before making any final decisions. There is no evidence However, it also is possible to seek a pathology second opinion on your own, and it does not require an in-person office visit. 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." When people recommend going to a Center of Excellence, believe them. 3: Prostate, right medial apex 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). They basically said it didn't matter. Allow yourself the time to seek multiple opinions. Methods: They hesitated calling it a TARGET LESION, but scored it PIRADS 4. With AHN Cancer Institute, you already get a world-class cancer program with leading expertise, care, and outcomes. Consultation with your nurse care manager. But I did speak to an oncologist who wanted to order Oncotype, which I did. Get a Second Opinion What can a second opinion tell me? The average age at the time of prostate cancer diagnosis is about 66. Does this also include HIFU, Cryoablation? IMPRESSION: After extensive discussion of his management options with his local urologist, primary care physician, and radiation oncologist, he also sought a second opinion at the Johns Hopkins Prostate Cancer Multidisciplinary Clinic at Sibley Memorial Hospital.The patient expressed an overwhelming desire to avoid surgery and any other invasive treatments. and transmitted securely. Unfortunately, what you do not realize may harm you! He said that he saw what JHs was referring to but did not determine EPE for a variety of reasons. MRI June 2017 again at SMIL. DRE is always normal. How could this compare using only partial slide re-reading? Johns Hopkins is home to many of the world's leaders in Pathology. 180 days after treatment PSA was .50. Also, in 2018 I had an exosome Dx test which scored 45.34, but I also retook that test this year and it went down to 30.79. * Membranous urethral length: 1.2 cm 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. The all-inclusive cost for a virtual second opinion for patients in the U.S. is $1,850. My questions are: In severe cases, a catheter may be required to relieve the symptoms. In unadjusted analyses, younger men , men with college-level education , and privately insured men and Medicare ) were more likely to obtain second opinions . Some men may have an enlarged prostate but not notice it. Make an appointment: 410-955-5222 Coordinating with your Treating Physician 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 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. I've been on AS since April 2016. All rights reserved. This teamwork ensures the best possible patient outcomes. 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.