He recommended waiting and watching at that time due to the lower PSA reading. 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. The out-of-pocket cost may be in the $300 range (insurance may not cover it), and it is a simple matter to call your urologist to forward the slides to them. Lymph nodes: There is no suspicious lymphadenopathy in the pelvis. Prostate dimensions: 4.1 x 2.8 x 3.4 cm I am already positively surprised that I am still alive 4.5 years after my diagnosis. I'm going to reach out to UCLA to see what they can do. We prioritized treatment as AS, FLA/TULSA (if a lesion ever presented itself), and Proton Beam Radiation. 3 months has passed, and its time for a PSA and a plan to have an MRI. My diagnosis is T2c, Gleason 7 (3+4). of tumor in the rectal prostatic angles. 24.5 BMI It worked great (with negative pathology of the tissue) and fixed a lot of nasty symptoms and risks. 2021 Sep 24;11(9):e044033. Let me know what everyone thinks if you see anything interesting or of note here or just have some advice. I had a telemed session with Dr. Chang, and it sounds like a pretty simple procedure, with urinary side effects that resolve pretty quickly. The side effects of the cut, radiate, hormone regime are unacceptable to me. There is no bony or bulky nodal disease in the pelvis Patients are often under the mistaken notion that they have to pick between their oncologist and MSK, but thats often not the case, Dr. Matasar explains. Based on this forum, Im very lucky for this outcome. 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. However, many insurance and health care companies do pay for such opinions and acknowledge the importance of second opinions. I had two no-risk, non-invasive tests: a Free PSA with an adverse score of 9% and a PCA3 test with a disappointing 41. 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. Can it be salvaged or are the risks of cancer too high? Getting a second opinion from Johns Hopkins, is it free or does one have to pay for it? They seem to think it'll do the trick.I feel great and I am glad I chose this treatment path. Their opinions are widely held to be definitive. In fact, additional biopsies revealed no additional 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. An acute bacterial infection can cause a burning sensation. Now, though, encouraging animal data and preliminary studies in human patients are making some doctors feel optimistic. (I must say that those low numbers concern me a bit.) In severe cases, a catheter may be required to relieve the symptoms. * Adjacent organ invasion: None. TZ zone more beneficial, but fairly large compared to whole gland and proximity to capsule edge would likely mean treatment would be suggested. BASE DATA: Learn more: Vaccines, Boosters & Additional Doses | Testing | Patient Care | Visitor Guidelines | Coronavirus. You have a rare or unusual cancer. The total number of cores with carcinoma is 3 Medical record collection from doctors and hospitals. Y'all are in my prayers! In terms of cancer, changes can be from cancer to benign (or vice versa) or from one type of cancer to another, which could . IMPRESSION: The people were great. Some men will have a very enlarged prostate, whereas others will have a mild enlargement. I have completed all that is necessary to enter Johns Hopkins Second opinion and PTEN test program. A blocked urethra can also damage the kidneys. PSA that brought me to this was 7.1. 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. In other words, can I have a team here in Wisconsin yet travel elsewhere to get my MRI? Masks are required inside all of our care facilities. I have posted here before, now with an update. 180 days after treatment PSA was .50. No two cases of prostate cancer are alike and an accurate diagnosisis critical to developing the best treatment plan. Second opinions from urologists for prostate cancer: who gets them, why, and their link to treatment . Dr. Albert Chang at UCLA appears to be the best in the biz for high dose rate (HDR) focal brachytherapy. 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. Treatment must be chosen based on stage and your 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. Forty percent of the men obtained a second opinion from urologists, most often because they wanted more information about their cancer or wanted to be seen by the best doctor . Hillen MA, Medendorp NM, Daams JG, Smets EMA. My new Dr however didnt order PSA so I asked him for one. All Gleason 6 (3+3). Brachytherapy Experience with Dr. Albert Chang at UCLA? Getting a second opinion on a diagnosis can reverse a diagnosis or alter the treatment plan. Both Drs and nurses knew what they were doing and had lots of experience. Have you heard of PRECISE follow up score for an MRI? 5: Prostate, left medial apex My long-term prognosis appears to be good with minimal side effects. 3: Prostate, right medial apex "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 . 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. Bethesda, MD 20894, Web Policies 4. 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. Us Too Prostate is a great club and many of you have helped me a lot already. Prostate cancer is the second-most diagnosed cancer in American men. PSA had increased to 5.4. Find more COVID-19 testing locations on Maryland.gov. Got my physical and normal DRE with new Dr. No issues identified. Dr. Nour - Emory in Atlanta. 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. The site is secure. Based on the results, our experts can provide you with an individualized treatment plan before you leave. 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. Because I had an implant in my ear, they would only give me a 1.5T MRI. Benign fibromuscular stroma; no prostatic glands are identified 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. undefined will no longer be visible to you including posts, replies, and photos. While I have three lesions, they are small and, without 3T mp MRI, might not have been discovered. I've had what I would consider a fluctuating PSA since first tested in November 2018. Your Primary Care Physician referred you to your diagnosing urologist whom you now trust. 7 People with PN had an increased likelihood of: 6 Eating disorders Self-harm After a little experimenting I have been able to achieve a partial erection. The results were ambiguous. Find more COVID-19 testing locations on Maryland.gov. Tumor Quantifications: 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. I'd like to talk with former patients who have gone through the procedure. We had the 3T MRI (no coil) and MRI guided biopsy at Sperling in NY, and then had a 2nd Opinion done by Johns Hopkins. MRI June 2017 again at SMIL. Allow yourself the time to seek multiple opinions. Other Features: Our gynecologic pathology team can also help determine if the tumor is localized or has metastasized from another region of the body. Only took Motrin and Tylenol for pain after release. If pain is present, a digital rectal examination will reveal hard areas. 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 . Second Opinions An accurate diagnosis is essential to ensure that the correct and most effective treatment is given. Urologists at the Johns Hopkins Brady Urological Institute can make the difficult process of deciding on a treatment plan easier. Many men name the diagnosing urologist as their treating doctor and do not seek other opinions. Move ahead to Dec 2020. Now the oncologist wants to perform a PSMA Pet Scan. Just got my pathology results. For all other cancer appointments, please call: 1-855-702-8222. 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. Men who sought second opinions because they were dissatisfied with their initial urologist were less likely to receive definitive treatment (odds ratio, 0.49; 95% confidence interval, 0.32-0.73), and men who wanted more information about treatment were less likely to report excellent quality of cancer care (odds ratio, 0.70; 95% confidence interval, 0.49-0.99) compared with men who did not receive a second opinion. mail@prostateoncology.com, 7 Tips for Seeking Second Opinions For Men with Prostate Cancer. 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 contacted Dr Busch (still in Chattanooga at the time) and he called me directly to talk me off the ledge. Asking for your comments: My plan is to choose quality of treatment over cost of the treatment. Also indicated everything else was "organ confined." Johns Hopkins Health - Second Opinions, Second Chances, Masks are required inside all of our care facilities, COVID-19 testing locations on Maryland.gov, High Blood Pressure May Take Its Toll on Your Kidneys. See this image and copyright information in PMC. Pathology report indicated additional presence of cells at right apex, but unclear whether intraprostatic incision or extraprostatic extension. Be sure to ask about and research the skills and experience a doctor has with treating prostate cancer. With The Clinic by Cleveland Clinic, patients have access to Cleveland Clinics 3500 specialists. Getting a second opinion on a diagnosis can reverse a diagnosis or alter the treatment plan. Will these places of excellence consider me, or am I bound to my regular doctor for insurance purposes? I am doing one in 6 weeks, regardless. Prostate, right lateral base: information. Six weeks later I have the biopsy in his office and a week later I get the results. 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. Extracapsular extension: The prostatic capsule is preserved. We are vaccinating all eligible patients. I am 58 and in very good health otherwise. * Prostate volume: 22 cc For these reasons and others, it is advantageous to seek more than one opinion about how your cancer can be treated. SO. 6. Johns Hopkins second opinion identified a PI-RADS 4 Mayo Phoenix also reviewed MRI prior to targeted biopsy. 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. 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. 2017 Oct;22(10):1197-1211. doi: 10.1634/theoncologist.2016-0429. No definitive evidence of distant metastatic disease is seen." Disclaimer. 7. Has anyone sent Radiology (mpMRI) reports and images to Hopkins for Second Opinion Review? So, Radiation Oncologist prescribed Cialis 5mg, daily. We are vaccinating all eligible patients. government site. Jonathan Epstein, MD received his doctorate from Boston University. Also these lesions did not abut or touch the wall of the prostate. Find more COVID-19 testing locations on Maryland.gov. You may be concerned that the cancer will grow rapidly out of control before you are able to get a second opinion. Does 3+4 at some point typically evolve into 4+3 and also serve as a trigger point for moving from AS to treatment? Recovery from Prostate Cancer | Bills Story. Our collaborative processes also extend to our colleagues at Johns Hopkins Medicine, a world-wide leader in cancer research. You THANKS! Other labs for second . Both of which are normal volumes, the Bullet Volume is considered more precise in prostates smaller than 55ml. 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. So, Radiation Oncologist prescribed Cialis 5mg, daily. The Journal of the American Board of Family Medicine published a study in 2017 that found that many patients do not get a second opinion outside of their PCPs original referral2. My direct phone (mobile) number is 703-992-3662, or you can private message me via this platform. After a second opinion from both Johns Hopkins and Stanford, the two 4+3's were downgraded. Some men have minimal or no symptoms at all. Getting a second opinion from us is easy, convenient, and all done remotely. Dr. Epstein has 744 publications in peer-reviewed literature and has authored 50 book chapters with a H-factor of 118. 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. Experts believe that this study is the first in history to have achieved such results. If you choose to be treated at Johns Hopkins, you may be able to begin treatment immediately. Axial T1-weighted images of the pelvis show no bony or bulky nodal disease. 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). 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. Future study is needed to determine when second opinions contribute to increasing the value of cancer care. Thanks for Everyone's Help, In the United States, studies estimate 72 new cases of PN for every 100,000 people between the ages of 18 and 64 years old. radiation, active surveillance, surgery, hormone therapy, and more. For cancers that are less common, second opinions can offer more treatment options. 2 of the 12 samples showed High Grade PIN and one area showed "suspicious for low-grade adenocarcinoma". Similarly, among those who received definitive treatment, second opinions were not associated with receiving surgery. BONES: No suspicious osseous Radhakrishnan A, Grande D, Mitra N, Pollack CE. I had a 3T mp MRI with coil bed, without and with contrast, at Emory on March 3. My first PSA was 8.03. Negative cancer in lymph nodes, seminal vesicles, and all margins. And thanks again for making this such a great support group! -------------------------------------------------------- Want confirmation about a diagnosis or treatment. If the enlarged prostate is not completely removed, it will shrink. 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. Diffuse probable benign peripheral zone changes limit evaluation for However, older men 75 years were the least likely to report obtaining a second opinion due to dissatisfaction with their initial urologist. It has been 2.5 years and the PSA has still not doubled as well. Thank you! Race and ethnicity. It got discussions started and questions answered. Luckily, his report co-coincided with the original QDx report. Low volume post-void residual urine is present in the bladder. 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. * 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! All views would be appreciated. - High grade prostatic intraepithelial neoplasia (HGPIN) * Adjacent organ invasion: None. There are three main types of doctors that manage prostate cancer: urologists, radiation oncologists, and medical oncologists. 2020 Jul 21;19(1):112. doi: 10.1186/s12904-020-00619-9. I am 65 and in excellent general health. Grade Group: 1 Thanks for considering. Secondary Gleason grade: 3 * Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project There are so many different departments at Hopkins that I don't know the optimal department to contact. Bookshelf 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. Because every patient is different, there are several ways to approach prostate cancer treatment. Cancer patients are encouraged to obtain second opinions before starting treatment. Studies show the clinical and financial benefits of obtaining a pathology second opinion. How important is Oncotype DX test for Gleason 7? MEASUREMENTS: If the problem is unresponsive to other treatments, your doctor may suggest a surgical procedure. 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. Receiving a second opinion was not associated with perceived quality of prostate cancer care. According to The National Institute on Aging, prostate problems are common after age 50. Do I need a third opinion? It took me awhile but minutes ago received my second opinion from Johns Hopkins. * Gleason Score: 3+3 (2 of 6 specimens) If I don't meter fluids before bed, I can expect to get up 3-4 times in the night.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. Every year I got a PSA and DRE during my annual physical. Adenocarcinoma: 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. 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. This teamwork ensures the best possible patient outcomes. Hello, I apologize upfront for the length of this post, but I was recently diagnosed with prostate cancer (T2C) and figure more information is better than not enough. Surabhi Dangi-Garimella, PhD. A man with a father or brother who had prostate cancer is twice as likely to develop the disease. I retired as a Dentist at the VA and saw many veterans with a wide range of outcomes as most of them became 100% service connected when diagnosed with prostate Ca due to exposure to Agent Orange if they served in Vietnam. Therefore, the value of these second opinions remains unknown. A doctor at MSK can collaborate with another doctor to offer support and help ensure the best outcomes. Dr. Nour is 100% sure that nothing has spread. Request an Appointment 410-955-6100 We used multivariable logistic regression models to evaluate the relationship between second opinions and definitive prostate cancer treatment and perceived quality of care. 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. 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. decision on a single medical opinion or the first appointment you get, you may She put me in the hospital. I am meeting with a multidisciplinary team of docs on March 18 at St. Joe's in Atlanta. He schedules appointments with a Radiologist and two local surgeons. Some docs say clean up the prostatitis while others tell me to avoid overuse of Cipro as it loses its effectiveness over time. Olver I, Carey M, Bryant J, Boyes A, Evans T, Sanson-Fisher R. BMC Palliat Care. Depending on your location, you may be able to have a telemedicine consultation. 9: Prostate, left anterior MRI lesion Our singular focus on treating cancer, and only cancer, means we have the expertise to confirm a diagnosis or treatment plan and offer options that may not have been considered. And if so, what does being accepted in a AS program look like, do I need to be present at their location? 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. We surveyed men who were diagnosed with localized prostate cancer in the greater Philadelphia area from 2012 to 2014.