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%). 6. Y'all are in my prayers! 2018 May;115:133-138. doi: 10.1016/j.urology.2018.01.048. One of the problems with second opinions is that insurers may not cover the expense. Inflammation of the prostate can affect the bladder and result in discomfort and other symptoms. Doctors are skilled at pitching the treatment they specialize in. It hasn't let me down. The problem is that all 3 pathologies noted an intraductal component. Low volume post-void residual urine is present in the bladder. We experienced information overload and decision/analysis paralysis. There are also some cases of the test showing no depletion but being wrong. Disclaimer. Cancer ABCs recommends: Johns Hopkins Hospital in Baltimore, Maryland, specifically Dr. Jonathan Epstein. Masks are required inside all of our care facilities. ---------------------------------------------------- During the next 4 weeks I meet with the recommended Radiologist, and the two local surgeons. In those cases, patients are tremendously grateful for having received the advice and encouragement to get a second opinion, Dr. Matasar adds. 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. When you get a diagnosis of breast cancer from your doctor, its not uncommon to get a second opinion. * Perineural Invasion also detected 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. After much discussion we both agreed that surgery was my best option and that he would do it at the end of July. * Prostate volume: 22 cc Generally, the symptoms can stabilize over time. Compared to younger men, men 70-74 years old and men 75 years were less likely to obtain a second opinion whereas men with college graduate level education or beyond were more likely compared to men with less than high school level education. And when I attempt to ask questions about intradcutal, I get responses about how little is known about it because it's so rare or that it is controversial or that they're not familiar with the study I'm referencing. Second Opinion Results, Johns Hopkins biopsy reading of 2 slides sent by Sloan: My diagnosis is T2c, Gleason 7 (3+4). 3. Blessings. 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. I had the slides reviewed at Johns Hopkins and 1 of the HG PIN cores was changed to suspicious for adenocarcinoma while another HG PIN core was changed to benign. 3/5 Secondary Gleason grade: 4 Even if someone is being seen at a different academic center, the trials and other treatment options that we offer here may be different. Other labs for second . I was diagnosed with a 3T MP MRI and a 3T MP MRI guided 4 core biopsy. Also, infection was noted, so the current PSA is high in part due to prostatitis. Other Features: I was confident I was making the right decision. 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. Five years ago I had a TURP. Read Also: Long Term Side Effects Of Brachytherapy For Prostate Cancer. The main purpose of the prostate is to produce semen, a milky fluid that sperm swims in. Cancer. Centro Diagnostico Italiano , Milan, Italy, Manfred Dietel, M.D.Institute of Pathology Charit, Humboldt University of Medicine, Berlin, Germany, Jonathan I. Epstein, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Robert J. Kurman, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Elizabeth Montgomery, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Manuel Sobrinho-Simes, M.D.University of Porto, Porto, Portugal, Ronald S. Weinstein, M.D.University of Arizona, Tuscon, AZ, Franco VisinoniMilestone Medical Technologies, Bergamo, Italy, Also Check: How Old Can You Be To Get Prostate Cancer. P/ 310-827-7707 | F/ 310-574-4002 | MAIL@PROSTATEONCOLOGY.COM. 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). Bladder: Normal. To learn more about how to get a Neuropathology second opinion, please visit our Neuropathology Division second opinions website. As I said, I am 58, so I would really like to preserve my quality of life for as long as possible, but the genomics report has me concerned. 1st opinion"Nonspecific sclerotic change of the right pubic bone with low-level radiotracer activity, favor degenerative change rather than osseous metastasis." It may be a new cancer, but it is more likely a recurrence since it is really near the ablation zone. Estimated prostate volume of 35 cc with an estimated PSA density of 0.11 ng/mL/cc. Video consultation and written report from your expert. I had no idea there were second opinions and I didn't have a clue about Genomic testing, or even genetic testing. Potentially inaccurate results can lead to selection of the wrong type of therapy. Further, the two tumors in question have not really changed much in size for more than 2 years. Treatment options include immunotherapy, Noted that some don't even include on report and should be looked as something to note but not obsess about. For cancers that are less common, second opinions can offer more treatment options. There are lots of lessons learned on the forum. This urologist can get you in for surgery next week. Comments appreciated, But I did speak to an oncologist who wanted to order Oncotype, which I did. In other words, the cancer is still contained within the prostate. They did 9 patients in Phase I and there have been 12 so far in Phase II. If I don't meter fluids before bed, I can expect to get up 3-4 times in the night. HMO members may also be discouraged from trying expensive treatments that have only a small chance of success, even if that chance is real. An accurate diagnosis is essential to ensure the most effective treatment. Bones: There is marketed marrow heterogeneity in the pelvic bones are not in the femoral heads. Prostate cancer is a malignant (cancerous) tumor of the prostate, a gland found only in men. A doctor at MSK can collaborate with another doctor to offer support and help ensure the best outcomes. Be sure to confirm your diagnosis at a center of excellence. 1. 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. Luckily, his report co-coincided with the original QDx report. He said that JHs said that it was 2 cores, but it was actually a fragmented core, that the fat did not present on the right place on the slide, that prior FLA (partial hemi-ablation) could affect the results, the MRI did not support, etc. 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. I had FLA done after first biopsy which staged me at 3+4 = 7. We used multivariable logistic regression models to evaluate the relationship between second opinions and definitive prostate cancer treatment and perceived quality of care. 7 People with PN had an increased likelihood of: 6 Eating disorders Self-harm (I think that it was easier to see because Mayo's MRI technology and procedures are better than SMIL's.) My direct phone (mobile) number is 703-992-3662, or you can private message me via this platform. 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 . Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. So the pathologist suggested a second opinion. If you are diagnosed with a urologic cancer, including but not limited to the prostate, bladder, kidney, and testicular or urinary tract, its important to consider a second opinion. Greetings gentlemen! 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. Primary Gleason grade: 3 Adenocarcinoma: Without the genomic test I have I lesion 3+3=6 and another, 3+4=7, with less than 5% pattern 4, and an MRI that shows no ECE, no other suspicious lesions and questionable cellular EPE based upon disagreement of pathologists. It works. 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. Though, for the most part the reports seem encouraging.I am curious if anyone has had something similar. Similarly, among those who received definitive treatment, second opinions were not associated with receiving surgery. FLA DONE AT FIRST BIOPSY G- 7. T2W MRI score= 5, DW MRI score= 5, DCE MRI score=positive If pain is present, a digital rectal examination will reveal hard areas. 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. Would it be rational to stay on AS until biopsy results show a higher volume of PCa for sampled cores (i.e. I had a follow up 3T MRI guided biopsy on March 18 at Emory. intricate disease and not all doctors have the same amount of experience Are you sure you want to block this member? The primary goal is to be cured with the least toxic, most effective approach. Prostate cancer is an Dont Miss: Is Coffee Bad For Your Prostate. 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. Greatest dimension 2cm. Your email address will not be published. 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. Seminal vesicles are normal. 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. Hi JM "Numerous publications show the clinical and economic benefits of obtaining a second opinion for Pathology specimens. That being said, they can be a beneficial member of the treatment team. That is literally the first time I heard that term other than seeing it in my pathology report. Your current doctor will frequently suggest a second opinion, if only to confirm the recommended course of action. 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. MEASUREMENTS: Note that I'm trying to get a second opinion from Johns Hopkins but Mayo, where the biopsy was performed, appears incapable of processing my request. 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. ZERO - The End of Prostate Cancer Support Community. However, there are other cases when a second opinion results in a very different diagnosis or set of treatment recommendations. More medical freakouts. We prioritized treatment as AS, FLA/TULSA (if a lesion ever presented itself), and Proton Beam Radiation. 4. It will be interesting to see, I think. I appreciate any comments or insight that anyone wants to share. He schedules appointments with a Radiologist and two local surgeons. Whether you want expert confirmation, lack understanding or confidence in your treatment plan, have a rare or unusual type of cancer, your cancer isnt responding to current treatment its reassuring to know that you have options through a second opinion. Ask your doctor for a copy of your complete medical record. 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. These findings are suspicious for degenerative changes however a subtle/early metastatic lesion cannot be excluded and continued periodic follow-up is recommended." 1. Tumor Quantifications: In adjusted models, obtaining a second opinion was not associated with receipt of definitive treatment . I followed up with the original pathologist to compare and he was more forthcoming. There is no one-size-fits-all treatment for prostate cancer. 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. When I read the forums and questions on this site everyone mentions their Gleason Score from their biopsy. Grade Group: 2 5. 2016 American Cancer Society. Getting a second opinion from Johns Hopkins, is it free or does one have to pay for it? Are considering a treatment that involves significant risks, such as surgery. Overall, obtaining second opinions was not associated with definitive treatment or perceived quality of cancer care. 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. Best practices dictate that you obtain a second confirmatory pathology evaluation. MRI RE-READ #2 (VERY VERY well respected radiologist): - 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 The .gov means its official. -------------------------------------------------------- He was right. I am relatively new to this forum and trying to educate myself as to my best course of treatment. I met with the radiologist 3/17 and he leans toward an IMRT radiation regimen of 5 or 20 sessions TBD combined with ADT (6-month shot but maybe 4 months was enough). Getting a Second Opinion The best time to seek a second opinion is before you start treatment. When I inquired with the oncologist that I had selected for my therapy before receiving the second opinion whether I would be a candidate for Active Surveillance considering the downgrading, she said 'no' due to the intraductal component. 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. doi: 10.1002/cncr.30412. About 80 percent of prostate cancers are diagnosed at a localized stage, which means that the cancer hasnt spread outside of the prostate. A diagnosis is usually reached within 3-5 days of your slides' arrival at Johns Hopkins. I also sent my biopsy slides to Johns Hopkins for a second opinion (Epstein's read was 3+4, but with lower pattern 4 involvement than the local pathologist.). * Adjacent organ invasion: None. Interesting differences: Recovery from Prostate Cancer | Bills Story. - DCE = (+) Urology. Keywords: Unauthorized use of these marks is strictly prohibited. My long-term prognosis appears to be good with minimal side effects. 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. - T2 = 3/5 The average age at the time of prostate cancer diagnosis is about 66. He said that it will improve in the future due to future improvements in the treatments. BONES: No suspicious osseous Confirm biopsy and imaging results with centers of excellence before making any final decisions. fibromuscular stroma, anterior prostatic contour is smooth. 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. Two from one lesion were positive as was one of the two from the other. Prostate, right lateral base: Caused me to bleed heavily. 2020 Jul 21;19(1):112. doi: 10.1186/s12904-020-00619-9. :) Will these places of excellence consider me, or am I bound to my regular doctor for insurance purposes? Just took time off and then life happened.Thanks in advance for the insights. prostate cancer; quality of health care; second opinion; specialists; treatment. During puberty, the body produces semen in a large number of cases, including enlarged prostate. The treatment of prostate cancer has evolved tremendously. !I've pasted a previous update below for background.I just got my PSA results and the numbers are still trending in the right direction. )As for side effectsI occasionally have some urgency/hesitancy having to pee. Similarly, among those who received definitive treatment, second opinions were not associated with receiving surgery. 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. Prostate, left lateral apex: Cleveland Clinics Virtual Second Opinions program connects you to an expert physician who specializes in your specific health needs. HHS Vulnerability Disclosure, Help Please don't hesitate to make any observations or ask questions. 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. One core had 5%, one 20%, and one 40%. I want to insure that the Imaging was read correctly and nothing was overlooked or missed. 4. I would appreciate hearing from that 2.8% out there who have an intraductal component. The people were great. It has been 2.5 years and the PSA has still not doubled as well. 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. With no travel needed and no red tape, its easy to get a second opinion, all from the comfort of your home. Masks are required inside all of our care facilities. We have a consult on Friday with the 1st opinion doc to review all tests. Seeking second opinions is becoming standard practice, and it is mandatory at Johns Hopkins. Radhakrishnan A, Grande D, Ross M, Mitra N, Bekelman J, Stillson C, Pollack CE. As some of you may know, I am a moderator for a support group for men on active surveillance for low-risk prostate cancer. Patients may experience a fever or chills as a result of the infection. The percentage of tissue with carcinoma is 70% A doctor may prescribe surgery or perform an endoscopic procedure. Discover what's to love about Charm City for yourself. This sounds to me like they're not familiar with the Oncotype DX test and makes me wonder how common is the test. If I am rested, I find that I am more ready than if I am not. We can help with your case. Three lesions: 1) GS 6 involving 30% of one core; 2) GS 6 involving less than 5% in one core; and 3) GS 6 involving less than 5% in another core. Read Also: What Are The Signs Of Prostate Infection. 30%/40% or higher)? Your doctor is not sure what is wrong with you. Ramsey SD, Zeliadt SB, Fedorenko CR, Blough DK, Moinpour CM, Hall IJ, Smith JL, Ekwueme DU, Fairweather ME, Thompson IM, Keane TE, Penson DF. The linear amount of tissue with carcinoma is 11 mm Centro Diagnostico Italiano , Milan, Italy, Manfred Dietel, M.D.Institute of Pathology Charit, Humboldt University of Medicine, Berlin, Germany, Jonathan I. Epstein, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Robert J. Kurman, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Elizabeth Montgomery, M.D.The Johns Hopkins Medical Institutions, Baltimore, MD, Manuel Sobrinho-Simes, M.D.University of Porto, Porto, Portugal, Ronald S. Weinstein, M.D.University of Arizona, Tuscon, AZ, Franco VisinoniMilestone Medical Technologies, Bergamo, Italy, Read Also: Nhs Prostate Cancer Risk Calculator. Masks are required inside all of our care facilities. My thoughts focus on the fact that I have a disabled son who needs my care. Us Too Prostate is a great club and many of you have helped me a lot already. 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. They seem to think it'll do the trick.I feel great and I am glad I chose this treatment path. 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. Over kill and redundancy I know, but it's my money, my prerogative. It is OK to not understand all the terminology. 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. 4, Dr. Jonathan Epstein explains the benefits of getting a pathology second opinion. I opted to waive the biopsy, wait 1 year and test again. - 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) 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. EVERY DAY, they'd take a low dose X-RAY and low dose CT to align the fiducials and ensure my bladder was full and the bowel was empty. The Stanford Medicine Online Second Opinion program offers you easy access to our world-class doctors. Following the advice of all on here, I need a team of doctors to manage my care. PSA that brought me to this was 7.1. 8: Prostate, left lateral base 2011 Feb;29(1):3-9. doi: 10.1007/s00345-010-0602-y. I was on active surveillance after a FLA procedure done in 2018. Thank you for your understanding and cooperation. Johns Hopkins second opinion identified a PI-RADS 4 Mayo Phoenix also reviewed MRI prior to targeted biopsy. I wish the VA would be more informative about this disease they owe it to our veterans. -------------------------------------------------------- The urologist offered surgery and radiation as options on 3/10 when we met. 3. What is NOT OK is quitting or avoiding the bad news, or handing the entire decision over to someone else.Good luck fellas! 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. It is not uncommon that two different pathologists looking at the same slide come to a different interpretation and opinion about what is in their microscope! Second opinions from urologists for prostate cancer: who gets them, why, and their link to treatment . Whats right for you will depend on the stage of the cancer, your level of risk and your general overall health. One of the bits of advice the group regularly dispenses is for men to get a second and even a third opinion if you have doubts about the first opinions rendered by your urologist, or your pathologist, or your radiologist, its always okay to seek out a second opinion. Total Gleason score: 6 I question the potential EPE and he said it didn't matter, but went ahead and ordered Oncotype. Pingback: PROSTATE PROS Episode 6: Breakthroughs in Radiation PROSTATE ONCOLOGY SPECIALISTS, Pingback: Like Man, Im Tired (Of Waiting): The How-to Guide for Men with Prostate Cancer PROSTATE ONCOLOGY SPECIALISTS, Your email address will not be published. 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. I retested in January 2019 and scored 4.20. I personally have benefitted from second opinions on my so-called cancer journey. 3 months has passed, and its time for a PSA and a plan to have an MRI. My goals are to control PCa, to minimize side effects, and to keep options open in the future. A biopsy was performed on 2/26. You may be concerned that the cancer will grow rapidly out of control before you are able to get a second opinion. This is not true. There is no evidence 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. 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.