I am new to the group and so happy to have found you all! Came home from dr with diagnosis of 'progression' of my prostate cancer (CRPC). Began June 2015. Since finishing up with Elegard txs. my PSA is up. Bone scan determined tumors outside of prostate. In shock. Urologist sending me to Oncologist but i do not think I like his recommendation. I live in New Jersey. I need a good Urologist Oncologist who specializes in prostate cancer and all of the new treatments. Can someone PLEASE make a recommendation?
Being in New Jersey you are right in between both Sloan Kettering in NYC and John Hopkins in Baltimore. You can look for trial at both here Home - ClinicalTrials.gov or get in touch with both for a second or third opinion. I have learned much from talking to a range of doctors. A consultation is a good way to see if you feel comfortable with the facility and staff.
MSKCC has several satellite locations in NJ. Maybe you should come to the main NYC location ( Sloan Kettering has an entire building just for PC) and work with an oncologist here who deals only with PC. Instead of coming to the city all the time, you can get your treatments closer to home in one of their NJ facilities, but have all decisions made with a top specialist who deals only with PC. Wishing you well 🌷
Michael Morris at MSK in NYC or Elizabeth Primack at Fox Chase in Philly would both be excellent choices.
Standard of care would be to use second line hormonal therapies (e.g., Xtandi, Zytiga), chemotherapy (docetaxel), immunotherapy (Provenge) or radiopharmaceutical (Xofigo). There are also clinical trials you may qualify for. What did the oncologist recommend?
Dr Oh at Mt Sinai is highly regarded prostate cancer medical oncologist in NYC and used by many in the nyc Malecare groups. Msk has good reputation but remember that you are being treated by the doctor, not by the brand.
Meet with two or three oncologists and then choose who to be treated by.
I live in New York and went to MSK ( among many other places) . I saw dr Behar Edhae.
MSK is a VERY big place. Easy to fall through the cracks.
I waited 2 hours in a crowded waiting room to see the Dr
I was not impressed with the Dr. / i went to him because he was recomended by PROLARIS laboratories for their genetic testing.
He did offer me an invitatiin to participate in one of MSK clinical studies ( at no cost) for a high frequency ablation guided by MRI.
I declined. I found the dr too young and arrogant to understand the crisis i was encountereing with its complex decisions. I do not recomend him.
Part of my reaction is that he sent a young female collegue to examine me ( she was about my daughters age) - i was not consulted about choice of male or female (my wife was present- the young female dr did not have the sensitivity to ask my wife to step outside) i allowed her to ask questions and check my BP and heartbeat, however when she asked me to drop my pants so she could check " your penis and prostate" i told her ( politely) no, i was there to discuss the result of my PROLARIS test with dr Edhae, and ould she please send him in.
She did, and he answered my questions. He would not recognize my current MRI or biopsy results from NYU ( another prestigious institution in ny) and told me i would have to do all that again with MSK in order for him to advise me further.
I cannot speak about any of the other Drs at MSK, but the one i saw and the experience i had did not inspire trust or confidence.
My advice is to see as many drs as you can, they all have differing solutions.
See who you feel the most comfortable with. Consider ALL the options and their side effects. Ask questions. Do not allow the dr or their qualifications to intimidate you; remember, YOU have to live with the result of their "skill"
Princept, I almost did not offer my observation, however, I will anyway. Set your modesty aside. Never forget that professionals, male or female, have a job to do in treatmenting this bastard of a disease. Your wife is an adult and capable of leaving on her own if modesty is her only concern; but I think not. She is there because she loves you and wants to understand and be supportive. Yet, it was your decision to allow her to participate, not the Doctor's decision.
Whenever one changes treating facilities, they always have tests required by their technicians as not all technicians are equal.
As far as waiting two hours ..... consider this .... how much time would you want the Doctor to go over unfavorable results? The answer mostly likely is until all of your questions are answered; even if it takes an hour; thereby destroying a time schedule. (Reminds me of my initial 2 1/2 hour first meeting with my Medical Oncologist fourteen years ago while others sat in the waiting room.)
You have a disease that brings with it death.
With all this said, fight your disease, remain positive, and above all, listen to qualified medical personnel without any biases or preconceived thoughts on how you think what may or may not a qualified physician. Hint. Age and sex have nothing to do with qualifications.
"Set your modesty aside. " I must respectfully disagree.
Women patients tend to be offered (or given by default) considerations for modesty. It costs the doctor and the institution nothing to do this. Preserving the patient's dignity can help the patient in a difficult time; ignoring it and stripping away modesty makes an already bad situation worse. The mind and body are connected, being treated with no respect has real effects.
The argument about waiting two is hours is the standard response, but the same institution the routinely wastes man-months of their patients' time every day as a matter of policy will also put you in the room with the doctor for 15 minutes when he tells you that you will die in a month. I got my diagnosis on my answering machine, with no attempt to follow up.
In the vast majority of cases, those delays aren't caused by taking extra time with earlier patients; I've waited hours to see docs at large institutions when I was the 1st or 2nd patient of the day. This is corporate policy, done for the convenience of the doctors and staff. Your time means nothing to them.
I've had multi-hour meetings with MOs and other docs, but never, ever at places like MD Anderson, Mass General, Dana Farber, or any of the other big centers. It's good that your experience was different.
My long meetings were always with doctors in private practice. Strangely enough, those docs almost never leave me waiting for hours. When they have bad news or other reason to spend more time than usual with me or another patient, they get the receptionist on the phone to re-arrange appointments. When I do have to wait, I get a genuine apology and usually some sort of explanation, not the bland lie.
Those same doctors who respect my time also show respect for me as a person, for modesty, for my comfort, for my overall well being. At MD Anderson I felt like a slab of beef on a conveyor belt. At my preferred docs I am treated like a human being.
This disease can bring death, but not always. Death is part of life, with or without prostate cancer. Plenty of men die with prostate cancer and not of it. My goal is to be one of those men.
My journey with this disease has been long, but not all uphill. I've learned to find some good in all of this. I've made a lot of great friends, learned a great deal about myself and what matters to me, explored a lot of things that I never knew existed.
Today I am in better health than at any time in my life. My weight is near ideal. I'm getting stronger from weight lifting and working out - something I knew I should do but Lupron finally got my off my butt.
My gut is healed after a lifetime of living with a leaking gut because I didn't realize there was any other way. I'm calmer. I've learned a bit of humility. The list goes on.
Perhaps most importantly I've learned how precious life is, how important it is to live every day as if it were my last. Because it might be. We're all going to die. I have a slightly better idea than many folks about what will kill me, but I have no idea when. In that regard none of us here are different than anyone else.
Absolutely agree that age and sex have nothing to do with qualifications. I've met more than one doctor who tried to shut down my questions with "I have 30 years experience." My response is that they act like they have 1 year experience and haven't learned a damned thing in 29 years.
We are just north of Philadelphia- have really liked Foxchase. Went to Penn and Jefferson to "interview" Pca docs too. Liked them all and they all had same advice. Foxchase just fit better for us. But haven't ruled out Sloan or Hopkins if we feel we need another opinion. We are in touch with all of the above watching for clinical trials.
thank you! Why do you look for clinical trials? Is it in hope of a new med that may work? Is it bc you are not having success with your current physician and meds? Just really need some concrete direction folks thank you
Aggressive is an awful word to hear but attitude makes all the difference my friend. My Doctor is in Sewell NJ with several offices in different areas of NJ. The name of the office is Delaware Valley Urology which just merged with New Jersey Urology,my Doctor is Dr. Gordon Brown he is an oncologist,Urologist,surgeon,and sits on several cancer boards all across the country. I have the highest respect for this man's wealth of knowledge he is truly attempting to save my life. Best of luck Brother in arms Leo.
First, get over your shock, this is totally survivable, choose wisely your treatment and know that chemo or rads kill healthy cells more than harmful ones. Change your diet as close to vegan as you can handle but don't deny yourself treats within reason. Cardio is the most important for exercise, and u must exercise to retain muscle mass. Keep EVERYTHING positive regardless of the prognosis, YOUR positivity will prevail over all. STAND UP, STAY UP AND ENJOY your life. Most of ALL REMEMBER THIS LIFE IS YOURS.
When Dr. Snuffy Myers retired, he referred some patients to Dr. Charles Drake at Columbia/NYC. He is a MO, specializes in PCa, and is an immunotherapy guru.
Thank you Mark Because I just read Dr Myers book I am starting there. Thanks for the recommendation. Seeing Dr Drake Tuesday 9am. I need 2 more recommendations and going to get this started. I think I will see Dr Oh at Mt. Sinai and 2 Dr's Michael Morris and Susan Slovin have come up in this group. You are all life savers. So much great input, experiences and love Thank You
My oncologist Dr. Michael Morris at MSKcc. Extremely knowledgeable and good bedside manners (and good sense of humor). He's at the Kimmel center for prostate and urological cancers. 68th street close to first avenue in Manhattan. They offer a discount parking garage at 56 street between 2 and 3 avenues, with a shuttle bus to the main building (68th between Ist avenue and York avenue). 1275 York Ave, New York, NY 10065
Phone: (646) 422-4469.
Here's a short (dated) video of Dr. Morris, which I've posted a few times.
Yes I do... I just saw him on 4/6. Been his patient since March 2008. I have seen many patients from the tri-state area at MSKcc which is a great hospital if you have the big C.
Also I've seen many patients from all over the world there.
My recipe makes a lot of base - it's hard to size down as one of the ingredients is only 1 oz - I guess you could quarter it but we use a lot so never have made small batches - so here it is - all are dry herbs you can purchase from any organic supplier - 2 LBS cut and sift burdock ROOT 1 LB Sheep Sorrel Leaf - 4 oz slippery elm powder 1 oz Turkey Rhubarb Root - Mix all together and then measure out into 1/2 cup pkgs. Paper pkg. (lunch bags) is best, because plastic chemicals will leach into the dry tea - To make your tea use one of the 1/2 cup packages to 1 gallon distilled water - Bring it all to a boil - simmer 10 minutes - Steep, overnight or for 12 hours whichever fits your situation. I make it after supper, steep overnight, and then strain in a.m. It strains easier if it's hot - I just use a fine mesh strainer but if you want a clearer tea you can use unbleached muslin. Store strained tea in glass jars (I use quart canning jars) in fridge - will keep up to one month - However, at 1/2 cup 3 to 4 x day one gallon batch will last only one week. It may sound like a lot of base but it's certainly cheap enough and the dry herbs/tea will be viable for at least one full year. A bargain to be sure and it has helped many, especially my husband.
Cats Claw Tea is made from the dried bark of the Una de Gato vine. It has many wonderful uses - you need .7 of an ounce of the herb to 1 quart "good" water - If you have a well, great, if not, purchase distilled. Simmer the herb in the quart of water for 30 minutes - strain (it will be red if it's good herb) and refrigerate -
I make two gallons of Essiac and 3 quarts of Cat's Claw a Week. Hubby takes it for treatment and I take it for prevention and pain management as well. We are both 70's with usual issues.
I hope this information helps. It is given with the hope that you and anyone who tries it will benefit. Please get back to me with any questions.
I am so sorry to hear about your diagnosis and I can understand how shocked you must be.
All I can say is that I wish you good luck. Hopefully you can find an oncologist you are happy with and you will work well with him/her and decide on the best treatment option.
Sorry to hear youur prognosis I have advanced metastatic prostate cancer and been treating it since Jan 2017. Had some failures in treatment and the cancer spread more. All the spread is in my bones, hip and spinal column, as well as ribs.
Had radiadtion in hip and another 45 treatments in pelvic area and prostate.
Was on firmagon 2 years but the cancer got smart at 18 months and spread everywhere. At least 6 areas.
I changed my treatment scource from a urologist to a very excellant team of oncologists and research at Fox Chase Cancer Center Phila. Best move i ever made.
Its now 5 1/2 years in the battle.
On Elligard with prednesone. Also Zytiga every day 1000 mg. Been doing great.
Also on a clinical trial which i know may not help me but could be a future drug to be approved by the FDA to help others early on. Im ok with that . Been on the trial over a year and it has done what was expected and now going through the steps with FDA for approval.
Currently my cancer is getting more aggressive and PSA is climbing .5 every 6 months in a row. Oncologist is on this and we are looking gor new cancers.
This happens as cancer eventually gets around all treatments .
I feel very confident in Fox Chase hands. They treat you with full respect and know you by name. Not just a number. Mine is really bad and they have helped me very much. I was going down a bad road at the other Hospital Crenter.
My PSA was 28 at finding of cancer. Gleason score 9 in all 12 biopsys . Was devastating.
Ive been down as low as .0001 with treatment til cancer started returning. Not scared as I know they will find it, treat it and continue to move on. Keep the FAITH. POSITIVE ATTITUDE along with great care is so important. I am seen every 28 days at Fox Chase for full testing.
Every 3 months is a full day and many scans and tests including Nuclear bone scans. You are watched in so many ways. You know all test results by the end of your visit THAT DAY . I am amazed at that.
Also on Exgeva injections to help my bones. There is so much more to tell but this is long enough to read for now.
I do have a Metronic Morphine automatic dosed pump implanted in my abdomin to control the serious pain in my back and spinal column from the cancer damage. I have no pain whatsoever.
Great care at FOX CHASE. Great urologist too. Hope this helps you.
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