My Oncotype rating was GPS 54, with a 26% chance of metastisis within 10 years. If pain is present, a digital rectal examination will reveal hard areas. (PZ) - normal Obviously the Covid 19 issue is playing a part in all of our decisions. Also, if any of you have a way to get medicare to pay some portion of the cost, please let me know as well. Asking for your comments: He recommended waiting and watching at that time due to the lower PSA reading. I did ask some questions about the study, if anyone is interested. 1st opinion"Nonspecific sclerotic change of the right pubic bone with low-level radiotracer activity, favor degenerative change rather than osseous metastasis." Breast cancer.A new study suggests surgery may not always be necessary for all breast cancer patients. I trust the second opinion Dr. Bush gave. Patient-Driven Second Opinions in Oncology: A Systematic Review. 3/3 4K score 19% (high end of intermediate) Allow yourself the time to seek multiple opinions. I was diagnosed with a 3T MP MRI and a 3T MP MRI guided 4 core biopsy. Also indicated everything else was "organ confined." Lesion 1: Left mid-base transition zone. Then about a month later I started 28 fractions of Proton Radiation.It was painless. Director of Surgical Pathology- Johns Hopkins, http://pathology.jhu.edu/department/services/secondopinion.cfm, The guy I used along with everyone else is Jonathan Epstein, M.D. Because I had an implant in my ear, they would only give me a 1.5T MRI. My question is regarding the results of an MRI guided biopsy into a distinct tumor vs. subsequent Oncotype Dx Results. Am I missing anything? I was referred to a urologist and tested again in April at 4.40. This kills both birds with a single stone. They may defer to the recommendation of the specialist, or refer you to a doctor with limited prostate cancer experience. 3. This teamwork ensures the best possible patient outcomes. An acute bacterial infection can cause a burning sensation. The prostates function is to create some of the fluid that insulates sperm cells found in semen. Reason was large volume of cancer (even though most of mine was Gleason 6), presence of Gleason 7 in biopsy and the rapidly increasing PSA. 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. After a second opinion from both Johns Hopkins and Stanford, the two 4+3's were downgraded. Wow, I sound like a snob now! Seminal vesicles are normal. - Perineural invasion is present Though, for the most part the reports seem encouraging.I am curious if anyone has had something similar. 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. Either the patient or the primary physician can initiate the process of getting a second opinion. prostate cancer; quality of health care; second opinion; specialists; treatment. Two from one lesion were positive as was one of the two from the other. This fluid causes the prostate to swell and cause a number of bladder-related symptoms. Unauthorized use of these marks is strictly prohibited. Some men may have an enlarged prostate but not notice it. We have a surgery date set up for the end of July at Johns Hopkins (our second opinion team).His stats:63yo, non smoker, 167lbs, Vegetarian/Vegan diet no other known health issuesWalks dogs for a living and cares for our small farmPSA 3.3 (Jumped from 1.6 in a year)Biopsy Scores 3+5, 4+3. Experts believe that this study is the first in history to have achieved such results. Second opinions from urologists for prostate cancer: who gets them, why, and their link to treatment . Ask us questions on this webpage. The purpose of starting this discussion is to gather peoples thoughts and opinions and actual experiences with Prostate Focal Laser Ablation. 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. C. Prostate, right apex, core biopsy: PROSTATE LESIONS: * Extracapsular extension: None. 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. -------------------------------------------------------- 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. (I must say that those low numbers concern me a bit.) Reasons for obtaining a second opinion from urologists. So, Radiation Oncologist prescribed Cialis 5mg, daily. 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. Generally, the symptoms can stabilize over time. You can find out by reviewing your plan or by reaching out to your insurance company. I would love to hear from anyone who has been involved in the Chicago study. Benign Processes: There is no extraprostatic extension. When I was diagnosed I really thought that I will live only 2 years. But I've had trouble getting Dr. Chang's office to provide any patient referrals. That's the good news. Prostate, right lateral base: This may include imaging, blood tests, prior treatment, and pathology reports. I worked out every day. I was confident I was making the right decision. U.S. News & World Report ranked the institute #7in the country. They find that one of my 5-10% Gleason 6 core is actually a 50% Gleason 7(3+4) and the MRI was so cloudy with blood from original biopsy they said they couldnt determine much. Men were asked if they obtained a second opinion from a urologist, and the reasons why. With world-renowned expertise, multidisciplinary specialistsand the latest data, we partner with you tomake informed decisions about managing your prostate cancer. 180 days after treatment PSA was .50. 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. You're also at greater risk of prostate cancer forming before age 50. Unfortunately, monetary incentives create biases that can work against patients best interests. 4, Dr. Jonathan Epstein explains the benefits of getting a pathology second opinion. Fear motivates you to want to treat this as soon as possible. Cleveland Clinics Virtual Second Opinions program connects you to an expert physician who specializes in your specific health needs. A patient suffering from an enlargement of the prostate may have pain in his lower abdomen and genitals. PROSTATE ADDITIONAL FINDINGS: Benign prostatic lesion. 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. 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. -------------------------------------------------------- Based on the results, our experts can provide you with an individualized treatment plan before you leave. I will say, the people I dealt with at Johns Hopkins were extremely nice and professional. We prioritized treatment as AS, FLA/TULSA (if a lesion ever presented itself), and Proton Beam Radiation. With The Clinic by Cleveland Clinic, patients have access to Cleveland Clinics 3500 specialists. However, learning more about prostate cancer and prostate-related health issues can help optimize health. Primary Gleason grade: 3 5/10 PSA 4.2/fPSA 9% taken at MSKCC (lab #3) and transmitted securely. Find more COVID-19 testing locations on Maryland.gov. How important is Oncotype DX test for Gleason 7? 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. Tumor Quantifications: 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. Reasons for obtaining a second opinion from urologists. 2019 Jan;69(1):7-34. doi: 10.3322/caac.21551. Sought Johns Hopkins second opinion of pathology slides. Want confirmation about a diagnosis or treatment. Consultation with your nurse care manager. Disclaimer. In some situations, insurers will even insist on a second opinion. (I think that it was easier to see because Mayo's MRI technology and procedures are better than SMIL's.) For these reasons and others, it is advantageous to seek more than one opinion about how your cancer can be treated. 2 cores from left base of 3+4=7 with only 5% involvement. When people recommend going to a Center of Excellence, believe them. Research was mixed on PINS, but in those days, many doctors saw them as likely to develop into cancer. A diagnosis is usually reached within 3-5 days of your slides' arrival at Johns Hopkins. Extraprostatic extension: negative After all, it seems like good idea to deal with your cancer sooner rather than later. It is OK to be overwhelmed with info. Some men will have a very enlarged prostate, whereas others will have a mild enlargement. I tried to send the samples out for genetic testing to Prolaris and Decipher, but there was an ordering error and they never went thru. Learn more through his bio: Progress in the field.In recent years, advancements in research have changed the way cancer is treated. Masks are required inside all of our care facilities. 4 Get a Second Opinion Dr. Jonathan Epstein explains the benefits of getting a pathology second opinion FLA DONE AT FIRST BIOPSY G- 7. * Size: 1.1 cm 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. F. Prostate, left apex, core biopsy: Pathology report indicated additional presence of cells at right apex, but unclear whether intraprostatic incision or extraprostatic extension. This is why the prostate is important to the body. This doctor or team of doctors will review the following: The doctor then communicate their opinion regarding treatment to both the patient and the primary physician. Only took Motrin and Tylenol for pain after release. 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. However, that information will still be included in details such as numbers of replies. The Radiation Oncologist knew of Dr Busch (by now in Alpharetta, GA) and spoke highly of him. I choose surgery over radiation because you can do surgery and then radiation, but it is almost impossible to do it the other way around. Expert review of your case by a Cleveland Clinic specialist. 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." PREVIOUS MRI RESULTS (LOTS of them) 4. MONDAY, Nov. 7, 2016 Second opinions have little impact on prostate cancer patients treatment decisions, new research suggests. Benign prostatic tissue Radhakrishnan A, Grande D, Mitra N, Pollack CE. This urologist can get you in for surgery next week. The PSA Doubling Time parallels my Urologist Doubling Time (I keep changing Uro until I find one who makes sense)! LESION 2 The presence of any G4 has been my trigger to seek treatment. 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! Finally, things are set and I know what is going to happen. Be sure to confirm your diagnosis at a center of excellence. Second Opinions (Adults) For stem cell transplant, please call 1-773-702-1994. Now, though, encouraging animal data and preliminary studies in human patients are making some doctors feel optimistic. The total number of cores identified is 3 It is still important to do your own research. Benign Processes: Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. Using the Bullet Volume gives you gland of 25.55. Benign prostatic tissue Anything I am overlooking or need to add to my list of considerations? 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. Even if someone is being seen at a different academic center, the trials and other treatment options that we offer here may be different. NOTE: THINK THIS LOWERS MY PSA DENSITY SOME IF MY GLAND ISN'T a 17CC PEANUT! In other words, the cancer is still contained within the prostate. I have had a CT of the pelvic area - negative and a whole body bone scan - negative. Video consultation and written report from your expert. 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. MRI RE-READ #3 (National Cancer Center of Excellence): Did robotic radical prostatectomy 1/25/12. It also rules out Brachytherapy. -------------------------------------------------------- * Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project My urologist suggested a couple more PSA tests followed by an MRI. Men with a college education or beyond also were more likely to cite wanting more information about their cancer as a motivation for a second opinion . * Prostate size: 3.9 x 2.8 x 3. cm It would be more convenient to use Mayo but I want the best practitioner regardless. If I am rested, I find that I am more ready than if I am not. The ADT has daunting side-effects but he said offers some improved chances of eradication, any long-term downsides that I should consider? 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.). 1. I am also talking with Dr Nour and Dr. Walser and possibly others to see if I am a good candidate for Focal Laser Ablation. My biopsy report does not mention a GS and the second opinion from Johns Hopkins did not list a GS either. Mohamad Allaf, M.D., answers questions about prostate cancer diagnosis and treatment options and discusses robotic prostatectomy at Johns Hopkins. 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. 2020 Dec 1;3(12):e2028320. Consultation with your nurse care manager. poorly defined margins and intermediate to low T2. 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. Dr. Albert Chang at UCLA appears to be the best in the biz for high dose rate (HDR) focal brachytherapy. Different institutions have different levels of experience when it comes to analyzing prostate biopsy samples and interpreting imaging results. )As for side effectsI occasionally have some urgency/hesitancy having to pee. * Gleason Score: 3+3, Slide 1 (vs. Sloan's 3+4) BONES: No suspicious osseous So, Radiation Oncologist prescribed Cialis 5mg, daily. However, there were no other suspicious areas on MRI. Find more COVID-19 testing locations on Maryland.gov. Every year I got a PSA and DRE during my annual physical. EDI am now 52 and not quite functioning like I did 4+ years ago. It has been 2.5 years and the PSA has still not doubled as well. - Benign prostatic tissue 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. 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. Your email address will not be published. My family doctor was alarmed because such a steep increase in prostate-specific antigen could be a sign of prostate cancer. Benign Processes: 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. With no travel needed and no red tape, its easy to get a second opinion, all from the comfort of your home. Even at the age of 48, he thought I would be a good candidate for AS. and I have already proven to myself that my body is good at cell mutation, so I wanted to be careful.At the 3 year mark (6 months after last MRI), my PSA spiked to > 6. Recently diagnosed a Gleason 3 + 3. Dont Miss: Bladder Control After Prostate Surgery. My most recent biopsy resulted in two cores with Gleason 4+3=7 and one with 3+3=6. We surveyed men who were diagnosed with localized prostate cancer in the greater Philadelphia area from 2012 to 2014. Dr. Dan Sperling - New York. )I contacted Dr Busch (still in Chattanooga at the time) and he called me directly to talk me off the ledge. present in bladder. Contact us or find a patient care location. Other Features: I measure PSA frequently, and it is stable and slightly declining with the last score at 5.5. Lesion 2: Right mid anterior transition zone. Thanks! Adenocarcinoma: intricate disease and not all doctors have the same amount of experience What is NOT OK is quitting or avoiding the bad news, or handing the entire decision over to someone else.Good luck fellas! I luckily found this webpage and I started reading everything I could get my hands on. Getting a second opinion from us is easy, convenient, and all done remotely. Getting a Second Opinion The best time to seek a second opinion is before you start treatment. According to the doctor it is around 3 mm. 4. The study was published online Nov. 7 in the journal Cancer. probably organ confined disease. Unfortunately, what you do not realize may harm you! Primary Gleason grade: 3 Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. I'm leaning towards SBRT. Symptoms include leaking and discomfort. 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. Netto says patients should be proactive in requesting that doctors take another look. official website and that any information you provide is encrypted Overall, obtaining second opinions was not associated with changes in treatment choice or with improvements in how patients viewed their quality of cancer care. 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. Especially opinions other than those of the first Urologist you see. What are you doing about it? This suggests that for some men, second opinions offer a way to pursue the treatment they already planned on, rather than to explore other treatment options, according to study authors Dr. Archana Radhakrishnan, of Johns Hopkins University in Baltimore, and her colleagues. Both of which are normal volumes, the Bullet Volume is considered more precise in prostates smaller than 55ml. Have you heard of PRECISE follow up score for an MRI? An official website of the United States government. Youve just been diagnosed with prostate cancer. Usually, patients obtain a second opinion after being referred to a second physician or to a special team of experts in a cancer center, called a multidisciplinary team. There are so many different departments at Hopkins that I don't know the optimal department to contact. When to move from Active Surveillance to Treatment for Prostate Cancer? Prostate volume: 17.58 cc 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%). Unable to load your collection due to an error, Unable to load your delegates due to an error. * 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! 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. However, there are other cases when a second opinion results in a very different diagnosis or set of treatment recommendations. Prostate Cancer Grading: The main purpose of the prostate is to produce semen, a milky fluid that sperm swims in. My involvement is below maximum of 15% of core. The TRUS biopsy is behind me, the second opinion from Johns Hopkins is behind me, and its time for next steps. Potentially inaccurate results can lead to selection of the wrong type of therapy. As soon as pathology slides were ready, Emory sent them to Dr. Epstein at Johns Hopkins. Its in your best interest to ask for another look at a cancer diagnosisIf youve recently been diagnosed with cancer, its wise to ask for a second opinion on your pathology specimen.Johns Hopkins researchers with the Urological Pathology Consult Division, led by Jonathan Epstein, M.D., first reported on biopsy errors a decade ago, when they found a margin of error in prostate cancer diagnoses large enough to give them pause. It is OK to be overwhelmed with info. If they have an enlarged colon, their physician can perform a TURP procedure. Masks are required inside all of our care facilities. Find more COVID-19 testing locations on Maryland.gov. 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. There is no bony or bulky nodal disease in the pelvis I personally have benefitted from second opinions on my so-called cancer journey. Got the fiducials placed, the Space-OAR gel placed, mold made, and had the pre-treatment MRI and CT Scan. 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. 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. 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. Thank you! Have been diagnosed with a serious or rare health condition. Read Also: Long Term Side Effects Of Brachytherapy For Prostate Cancer. PSA that brought me to this was 7.1. I also learned a lot more about the high undisclosed risk of side effects of various treatment plans. undefined will no longer be visible to you including posts, replies, and photos. His second opinion just came back. 2. These so-called grading and staging errors are more common and can affect how aggressively a patient is treated. This shows very high signal intensity on the diffusion-weighted 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. Blessings. HMO members may also be discouraged from trying expensive treatments that have only a small chance of success, even if that chance is real. feel the clock ticking. This is the most common urinary tract problem in men under 50, and the third most common in men over 65. We prioritized treatment as AS, FLA/TULSA (if a lesion ever presented itself), and Proton Beam Radiation. The symptoms of acute bacterial prostatitis are similar to those of CPPS. I still have some urgency and frequency issues, but I am not complaining too bad. In other words, can I have a team here in Wisconsin yet travel elsewhere to get my MRI? My prior Prolaris study (2018) before the FLA was very low risk. Benign fibromuscular stroma; no prostatic glands are identified 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. transition zone. Accessibility I worked out every day. Also Check: Prostate Cancer Stage 7 Treatment. Jonathan Epstein, MD received his doctorate from Boston University. sharing sensitive information, make sure youre on a federal PROSTATE PROS Episode 6: Breakthroughs in Radiation PROSTATE ONCOLOGY SPECIALISTS, Like Man, Im Tired (Of Waiting): The How-to Guide for Men with Prostate Cancer PROSTATE ONCOLOGY SPECIALISTS, Considering Prostate Cancer Clinical Trials? very activerun/cycle 6 days a week These findings are suspicious for degenerative changes however a subtle/early metastatic lesion cannot be excluded and continued periodic follow-up is recommended." Y'all are in my prayers! Perineural invasion is identified Right mid anterior transition zone (PIRADS 2). Patients may experience a fever or chills as a result of the infection. And, even working in a fairly technical field myself, I was amazed at the technology and precision of that Proton Machine. The PubMed wordmark and PubMed logo are registered trademarks of the U.S. Department of Health and Human Services (HHS). I want to insure that the Imaging was read correctly and nothing was overlooked or missed. During the next 4 weeks I meet with the recommended Radiologist, and the two local surgeons. * Sloan only sent partial cores, slides 1 and 4. Dr also stated he was able to totally spare one of my nerves, but to get margin may have damaged one. Dr. said pirad-5 and to prepare for bad news and probably around a Gleason 7 and that he is rarely wrong. Check Biopsy and Imaging Results for Accuracy. With no travel needed and no red tape, its easy to get a second opinion, all from the comfort of your home. Therefore, the value of these second opinions remains unknown. Biopsy in 12/27/11 showed 3/14 cores, Gleason 6 with PSA of 4.5. 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. 4/16 3T MRI performed (reports/re-reads below) Men who sought second opinions because they were dissatisfied with their initial urologist were 51 percent less likely to receive definitive treatment, and men who wanted more information about treatment were 30 percent less likely to report excellent quality of cancer care compared with men who did not receive a second opinion. Dr. Jonathan Epstein of Johns Hopkins University Hospital. I certainly would - after all, there's a certain brotherhood bond here. When you review your pathology report and are going to be making important decisions, like treatment decisions, which will be based on the information from the pathology report. Do I need a third opinion? Anyone with insight into this and advice? 5. NONE of the many radiation oncologists, surgeons or urologists I've spoken with in my journey have ever mentioned the term to me so I had to look it up. 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.
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