johns hopkins prostate cancer second opinion

All wanted to do what they do, schedule treatment which at this time is only Gleason 6 which I now know is not life threating. This is often the case when the primary physician advises an expensive treatment. Second opinions from urologists for prostate cancer: who gets them, why, and their link to treatment . EDI am now 52 and not quite functioning like I did 4+ years ago. More medical freakouts. Of these, 40% obtained second opinions, most commonly because they wanted more information about their cancer (50.8%) and wanted to be seen by the best doctor (46.3%). I was on active surveillance after a FLA procedure done in 2018. Studies show the clinical and financial benefits of obtaining a pathology second 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 am an airline pilot with exposure to radiation, jet fuels/fumes, etc. 9. Adenocarcinoma: Do any of you have an opinion or actual experience with any of the three listed below? Benign fibromuscular stroma; no prostatic glands are identified Of course, my old school Urologist recommended surgeryHe, of course, knew the best robotic surgeons around.Anyway. My mind goes all over the place as to why this is. Thanks! Prostate, left anterior MRI lesion: 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. Extraprostatic extension: negative John, I was diagnosed on 11 December, 2013. The total number of cores identified is 3 The problem is that all 3 pathologies noted an intraductal component. Benign fibromuscular stroma; no prostatic glands are identified Similarly, among those who received definitive treatment, second opinions were not associated with receiving surgery. Many researchers believe PTEN present is a strong brake on -------------------------------------------------------- The prostates function is to create some of the fluid that insulates sperm cells found in semen. 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. 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. Both of which are normal volumes, the Bullet Volume is considered more precise in prostates smaller than 55ml. Further, among men with low risk disease, we did not observe a significant association between second opinions and receipt of definitive treatment or surgery. The lesion also shows focal increased permeability. Thanks, BigD. I've been on AS since April 2016. If anyone has used him, please let me know what your experience was like. Prostate, right lateral base: In other words, can I have a team here in Wisconsin yet travel elsewhere to get my MRI? Prostate cancer is an Seminal vesicles and other margins are negative for tumor. Prostate, left lateral base: Emotional outlook is fragile at times and straight clinical approach of doctors does not help. Here are the details: Some men will have a very enlarged prostate, whereas others will have a mild enlargement. Is it done through my doctor or do I do it myself with sending CDs of the MRI? The local pathologist read the biopsy and said 3+4=7 10% pattern 4 for both lesions. Move ahead to Dec 2020. For a second opinion on the results of your prostate biopsy, there is no place better to get one than from the well known prostate pathologist, Dr. Jonathan Epstein at Johns Hopkins. In fact, additional biopsies revealed no additional cancer. __________________________________________________________________________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. BASE DATA: After applying exclusion criteria, the final analytic cohort included 2365 respondents. That said, I have some questions that I derived, keeping in mind that 99% of what I have learned since February has come directly from this group: have no symptoms, and yet you have cancer? Thanks for Everyone's Help, I luckily found this webpage and I started reading everything I could get my hands on. Need guidance choosing from multiple treatment options. Conflicting Prostate Biopsy OpinionsWhat to Do? We prioritized treatment as AS, FLA/TULSA (if a lesion ever presented itself), and Proton Beam Radiation. The purpose of starting this discussion is to gather peoples thoughts and opinions and actual experiences with Prostate Focal Laser Ablation. Knowing your stage and information specific to that stage makes you more medically sophisticated and enables you to navigate through the potential biases of surgeons and radiation therapists. The presence of any G4 has been my trigger to seek treatment. Even if someone is being seen at a different academic center, the trials and other treatment options that we offer here may be different. About 80 percent of prostate cancers are diagnosed at a localized stage, which means that the cancer hasn't spread outside of the prostate. Prostatic Adenocarcinoma 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. Overall PIRADS Score: 5/5 I am an airline pilot with exposure to radiation, jet fuels/fumes, etc. Unlike pathology labs in most hospitals, Jonathan Epstein's lab at Johns Hopkins has pathologists who specialize in reading prostate tissue samples. )As for side effectsI occasionally have some urgency/hesitancy having to pee. Primary Gleason grade: 3 But I don't want to do a radical prostatectomy or radiation that would have large side effects now if the laser is a viable option given my data set. 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. They agreed with the PI-RADS 4. Netto points to prostate cancer as an example: If your diagnosis changes from a higher grade to a lower grade cancer, it could mean having the option to avoid radical treatment.Seeking second opinions is becoming standard practice, and it is mandatory at Johns Hopkins. 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. Similarly, among those who received definitive treatment, second opinions were not associated with receiving surgery. I was to follow up with my new Urologist (another surgeon) for 3 months PSA checks and annual 3T-MPMRI.My PSA checks were static and the next year's MRI looked just like the first. 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. Bring All Labs/Notes to Each Appointment. prostate volume). My question is--what importance do volume levels play in determining when to move from AS to treatment? 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. P/ 310-827-7707 | F/ 310-574-4002 | MAIL@PROSTATEONCOLOGY.COM. I have had a CT of the pelvic area - negative and a whole body bone scan - negative. I really just want the results of their innovative PTEN test. 2nd opinion"Sclerotic change at the right pubic bone with max SUV of 1.4." Good Luck and God Bless everyone. This kills both birds with a single stone. He also said perinueral invasion, but not extracapsular extension. That's the good news. poorly defined margins and intermediate to low T2. * He said probably not candidate for watchful waiting because of tumor volume shown and seen on MRI. Getting a second opinion on a diagnosis can reverse a diagnosis or alter the treatment plan. 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. Even for men with faster growing, more aggressive prostate cancer, taking the time to seek a second opinion should be a priority. And by FAA Aeromedical Ruling, I'd need a few post procedure reports before being cleared to fly again.) 7. My understanding is that brachy is great for efficacy with less risk to the bowel and the same risk for incontinence and ED as other forms of radiation. Also, Oncotype subsequently invalidated my results because they found in the history that I had a prior FLA. Allow yourself the time to seek multiple opinions. -------------------------------------------------------- Has anyone else run into this where the gleason score is favorable, but the genomic (specifically Oncotype) test is not? One of the problems with second opinions is that insurers may not cover the expense. Due to the spread of the Coronavirus worldwide and the first confirmed case of the Coronavirus disease in Turkey, the executive team of the Anadolu Medical Center has taken preventive measures to protect the patients and their relatives. I have been drinking out of an information fire hose. He adds that second opinions also can provide insight into topics like clinical genetics and family risk or issues related to complementary or integrative medicine approaches to manage symptoms. If I am rested, I find that I am more ready than if I am not. I'm turning 58 in one week. Ask your doctor for a copy of your complete medical record. The prostate gland is slightly enlarged secondary to transition zone hyperplasia (25cc total) Am I wrong? I wanted to keep my options open. My girlfriend lives 2 blocks from the Emory Proton Clinic.We prayed on it and overthought the crap out of it. The biopsy disclosed I had some abnormal cells resembling cancer known as PINS, short for prostatic intraepithelial neoplasia. 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. No extraprostatic extension. "We were surprised by the relatively large percentage of men who obtain second opinions for their prostate cancer," said lead author Dr. Archana Radhakrishnan of Johns Hopkins University in . 2021 Sep 24;11(9):e044033. 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 prioritized treatment as AS, FLA/TULSA (if a lesion ever presented itself), and Proton Beam Radiation. Benign Processes: 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. I am doing one in 6 weeks, regardless. I suggest for all that hear, "you have cancer" that you seek more opinions! All Gleason 6 (3+3). 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. Their MRI was more sensitive and found there were actually 2 lesions close together that looked like one on the prior MRIs. 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. Lesion 2: Right mid anterior transition zone. Prostate cancer is a malignant (cancerous) tumor of the prostate, a gland found only in men. This has raised some questions on all the scans so far. A doctor may prescribe surgery or perform an endoscopic procedure. Study after study confirms that doctors favor the treatment they are trained to do urologists typically recommend surgery and radiation oncologists recommend radiation. 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. This condition causes pain in the lower back and groin area, and may cause urinary retention. Benign Processes: My question is regarding the results of an MRI guided biopsy into a distinct tumor vs. subsequent Oncotype Dx Results. 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. Greenfield G, Shmueli L, Harvey A, Quezada-Yamamoto H, Davidovitch N, Pliskin JS, Rawaf S, Majeed A, Hayhoe B. BMJ Open. I have requested a second pathologist's opinion from Johns Hopkins based on feedback from this forum. * Seminal vesicle invasion: None. His most-frequently cited first or last authored publications is Pathological and Clinical Findings to Predict Tumor Extent of Nonpalpable Prostate Cancer, published in JAMA, which established the criteria for active surveillance. Over 80,000 specimen cases are seen at Johns Hopkins each year. The more accurate the information we have, the better our treatment decisions. (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. Immediate means 6 weeks just to see his NP. 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. First of all we would like to emphasize that the health of our employees, our patients and their relatives is our first priority. I just received a second opinion report from Johns Hopkins. The Radiation Oncologist knew of Dr Busch (by now in Alpharetta, GA) and spoke highly of him. The primary goal is to be cured with the least toxic, most effective approach. With that alone, I would likely be a candidate for continued Active Surveillance. While I now concluded we need to find "it", I researched the best approach to see what is really going on and to do this safely. My first PSA was 8.03. ADC: mean 879 / median 839 / st dev 223 We have a consult on Friday with the 1st opinion doc to review all tests. In general, a second opinion is a good option for people who have recently received a cancer diagnosis but have not started treatment, as well as for people who have already completed chemotherapy or radiation treatment. I want to insure that the Imaging was read correctly and nothing was overlooked or missed. Your email address will not be published. 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. Include Your Primary Care Physician as Member of Your Treatment Team. So off I went to see a community urologist who performed a needle biopsy in his office. The linear amount of tissue with carcinoma is 23 mm 2. - Follow-Up Score (PRECISE) for this lesion = Stable MRI appearance: no new focal/diffuse lesions. Only took Motrin and Tylenol for pain after release. My long-term prognosis appears to be good with minimal side effects. Call us with any questions: 410-955-2405, ext. There are so many different departments at Hopkins that I don't know the optimal department to contact. This is a PI-RADS 5 lesion in Which Patients Report That Their Urologists Advised Them to Forgo Initial Treatment for Prostate Cancer? But I refuse to sit still, I continue to research and to plan, as best I can. PSA that brought me to this was 7.1. 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. However, he also said it's treatable even at a 2cm size and the transition zone is a favorable spot. Didn't know if she had the catheter in far enough and not getting any urine through itwondered if she had inflated the balloon enough and wondering if it was the reason that I have developed an abscess. - 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) * Extracapsular extension: None. 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. 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. I had the MRI in April 2021 and it showed a PI-RADS 4 lesion. Now, I would like to send Radiology for a similar review. * Perineural Invasion detected In order to give treatment for each patient with utmost security we would like to announce that currently there will be no visitors allowed.Please note that only one attendant per in-patients is permitted. They want him to start radiation 25 sessions and chemo pills of Casodex 50 mg 28 pills. TRANSPERINEAL MRI GUIDED BIOPSY RESULTS An acute bacterial infection can cause a burning sensation. What are your opinions of what that is, and where to get it? Seeking second opinions is becoming standard practice, and it is mandatory at Johns Hopkins. However, a new study by researchers at the Johns Hopkins University has found that second opinions did not change treatment choice or the persons perception of the quality of care they receive, at least among low-risk men. Dr. Dan Sperling - New York. Extracapsular extension: The prostatic capsule is preserved. JAMA Netw Open. * Should still go for a Johns Hopkins second opinion on the pathology or is that overkill since the first one was done at MSKCC? 8. Our gynecologic pathology team can also help determine if the tumor is localized or has metastasized from another region of the body. Patient-Driven Second Opinions in Oncology: A Systematic Review. My diagnosis is T2c, Gleason 7 (3+4). The percentage of tissue with carcinoma is 45% This shows very high signal intensity on the diffusion-weighted Does every biopsy provide a Gleason Score? Lesion 1: Left mid-base transition zone. However, there are other cases when a second opinion results in a very different diagnosis or set of treatment recommendations. Further, among men with low risk disease, we did not observe a significant association between second opinions and receipt of definitive treatment or surgery. Epub 2010 Oct 20. There were several areas of interest - but nothing in seminal vesicles, lymph, or bones. 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. I assume the data on gleason scoring is much more robust/reliable than genomics as it has been around longer and used more extensively. NOTE: THINK THIS LOWERS MY PSA DENSITY SOME IF MY GLAND ISN'T a 17CC PEANUT! 4, Dr. Jonathan Epstein explains the benefits of getting a pathology second opinion. The total number of cores with carcinoma is 3 Men often seek second opinions from urologists before they initiate treatment for their newly diagnosed prostate cancer. Have a condition that isnt improving or is getting worse, despite treatment. I've had what I would consider a fluctuating PSA since first tested in November 2018. Read books and realize as soon as they are published, they are outdated. But, after 4 drinks or if I'm tired/jet lagged I find that sleep is more appealing than sex. 1st opinion"Note is made of sclerotic changes in the right pubic bone adjacent to the symphysis pubis having only low-level activity and this is thought to be more likely due to degenerative changes rather than bony metastasis." Keeping a timeline and organized medical records is important because it can contribute to your treatment plan. If they have an enlarged colon, their physician can perform a TURP procedure. He was right. It is OK to not understand all the terminology. 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. Masks are required inside all of our care facilities. It hasn't let me down. If you choose to be treated at Johns Hopkins, you may be able to begin treatment immediately. The study was published online Nov. 7 in the journal Cancer. Best wishes to all those whose concerns for the day are far more serious than mine. Johns Hopkins is home to many of the world's leaders in Pathology. I would feel much more comfortable, if the numbers stay the same, being involved in a recognized Active Surveillance Program. If the enlarged prostate is not completely removed, it will shrink. Expert review of your case by a Cleveland Clinic specialist. First MRI done in June 2016 by Scottsdale Medical Imaging - nothing found. - PI-RADS for this lesion = 4/5 Fear motivates you to want to treat this as soon as possible. If these do not work, your symptoms could progress and become chronic. My plan is to choose quality of treatment over cost of the treatment. My local urologist didnt want to schedule one because it he said it wouldnt change my treatment options, radiation or surgery. They basically said it didn't matter. This urologist can get you in for surgery next week. He said that he saw what JHs was referring to but did not determine EPE for a variety of reasons. I also changed my diet to plant based food, started juicing, and started taking supplements (think Turmeric, Green Tea, etc.). We are vaccinating all eligible patients. C. Prostate, right apex, core biopsy: No definitive evidence of distant metastatic disease is seen." Fear, confusion and uncertainty set in. 3/3 4K score 19% (high end of intermediate) Overall, obtaining second opinions was not associated with definitive treatment or perceived quality of cancer care. 6. Dr. Nour is 100% sure that nothing has spread. The researchers did not include more minor errors in rating how fast-growing and how advanced a cancer was. 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. Question anemia. I opted to waive the biopsy, wait 1 year and test again. * Extracapsular extension: Possible involvement of the anterior Got the fiducials placed, the Space-OAR gel placed, mold made, and had the pre-treatment MRI and CT Scan. With no travel needed and no red tape, its easy to get a second opinion, all from the comfort of your home. Hillen MA, Medendorp NM, Daams JG, Smets EMA. __________________________________________________________________________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. 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. HHS Vulnerability Disclosure, Help I assume it is not free. (I must say that those low numbers concern me a bit.) He spent an hour on the phone reassuring me that I didn't need to rush into anything, and they he'd love to scan me 6-8 weeks after my TRUS Biopsyhave to let the trauma and all the blood leave the prostate for a good image. 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. 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. :) 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. Overall, obtaining second opinions was not associated with definitive treatment or perceived quality of cancer care. Seminal vesicles are normal. And it is OK to have paralysis by over-analysis. Y'all are in my prayers! Interesting differences: 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. Using the Bullet Volume gives you gland of 25.55. Find more COVID-19 testing locations on Maryland.gov. feel the clock ticking. Recovery from Prostate Cancer | Bills Story. Because I had an implant in my ear, they would only give me a 1.5T MRI. Blessings. 4: Prostate, right medial base 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. My most recent biopsy resulted in two cores with Gleason 4+3=7 and one with 3+3=6. A newly published paper by Fischer et al. Breast cancer.A new study suggests surgery may not always be necessary for all breast cancer patients. Is the destruction of my prostate inevitable and necessary for my survival (my understanding is that both surgery and radiation will do this)? 2017 Oct;22(10):1197-1211. doi: 10.1634/theoncologist.2016-0429. During the next 4 weeks I meet with the recommended Radiologist, and the two local surgeons. 4. JHs just said it was minimal less than 5%. Remember if you ship them include the following information: You May Like: Blood In Urine After Prostate Biopsy. If its a common cancer with a well-established standard of care, they can offer insight into clinical trials or novel treatments that may be better than the standard. I can do radiation as a monotherapy. Atrophy Contact us or find a patient care location. Radiation oncologist of same group of doctors says to do IMRT (using Rapid ARC program) as precautionary treatment, regardless of PSA scores. I was diagnosed with a 3T MP MRI and a 3T MP MRI guided 4 core biopsy. - Prostatic adenocarcinoma, Gleason score 3+4=7 (grade group 2, pattern 4: 5%) involving 2 of 2 cores (medial core: 3.5 mm, 30%; lateral core: 2.5 mm, 20%), 0.5 mm to the blue inked tissue edge (the closer) 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. 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. As evidenced on this site, some studies indicate that GS 6 shouldn't even be classified as PCa and that it isn't aggressive. 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. 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. It may be a new cancer, but it is more likely a recurrence since it is really near the ablation zone. I certainly would - after all, there's a certain brotherhood bond here. How much is the fee for an opinion of my recent MRI? 180 days after treatment PSA was .50. Future study is needed to determine when second opinions contribute to increasing the value of cancer care. It will be interesting to see, I think. 3T MRI with coil is done initially, along with a TRUS biopsy. In the mean time my PSA was movingno longer static, but never back up to 6. 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. Two from one lesion were positive as was one of the two from the other.

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