I went to them for advice, when my prostate cancer was contained in my prostate. This was five years ago, I was ignorant, the Urologist wanted to RP, said was this was only way to be cured. I did not get a referral for other options, like Radiation treatment, for example, brachytherapy was a sound option.
I ran away from their one sided greedy option, was so ignorant, but didn't know it was my responsibility to challenge these self serving experts. My life is short, do not trust your doctor, he is just human, greedy and imperfect, please challenge and defend your life!
Dana-Farber is what you make them do for you, they have no compassion for patients, they are a wholesaler cancer company like Costco sales. I hope my doc Mark Pomerantz is compassionate doc, think he is, hope...
Well, unlike you, I was TOO trusting of my urologist and got to surgery to late for the PCa to be organ confined. We do the best we can with what we have and move on to where we are. I likely have as yet undetected mPCa - after surgery, adjuvant radiation, and one round of ADT. I had severe incontinence (likely caused by damage done to my urethra during the RP surgery) and eventually had to have surgery to place an artificial sphincter. But even with all that, my current status is excellent when compared to others here on the site.
The best advice I can offer is for you to try to think positively about your current situation and put together the best treatment plan you can. Do your own research here and elsewhere, get a second opinion, if necessary, and put the past behind you. Nothing back there is going to make you well or help treat your PCa.
When I got my final biopsy report, I researched it with every source I could find. With that information, I "partnered" with my cancer center in making the decision to do the adjuvant radiation. Did it cure me? No. Did it slow down my cancer? Maybe. Did it increase my odd of keeping the cancer at bay? Probably. Not the best outcome I hoped for (as I had a biochemical recurrence 3 years later), but likely better than had I done nothing. Most importantly, it was a decision my surgeon, RO, and I made together.
I also cleaned up my diet and lifestyle and researched supplements that I though might be beneficial to my overall health and/or to fighting PCa. Everyone has to find their own way on this journey with PCa. Finding a way to feel that you are a controlling participant in your treatment is essential for a good outcome. Take charge and get positive! There are many here at this site that can help you get there. Good Luck with Dr. Pomerantz. (Someone here may know him?) Most of all, Be Well - cujoe
Dr Pomerantz is great, I could be cured today, if he was my doc 5 years ago. I'm angry at the Dana-Farber Institute, because gave my "blind" trust to the institute. Was naive in thinking the institute would have had a standard care protocol, which their physician staff would adhere too.
Yes, looking forward, but get so angry at times, because had a chance...
I also checked out Dr. Pomerantz at ProPublica'a DocDollar database and you can feel good that he is not overly "beholding" to any drug company. Looks like he has only been reimbursed for minor travel expenses. (Not the case with all cancer doctors as some are heavily reimbursed for "consulting".)
Cujoe,thanks. I too went to surgery on recommendation that it was contained, only to immediately discover it was also in pelvic lymph nodes that were missed in surgery. Further, I had completed the PSMA PET galladium scan that was reported to me as “all clear/confined to the prostate” prior to RP and then upon post-surgery 2nd review identified the hot nodes.
Not sure how I feel about it (the docs say the first scan was r&d and RP probably correlates to better outcomes), but thinking now brachytherapy would of been a better start.
As others noted, you can’t go back, only forward so I make peace with it and trust my adjuvant ADT + EBRT will finish this job. Seems to me It’s a complicated business where your own knowledge and research improves the odds but no guarantees.
Any stars you don't give out are more than made up for by the humor you bring to the HU community. I award you a RAC five diamond rating for levity. May you live long and laugh much. Be Well - cujoe-the-sometimes-canine-terror
Very impressed with your positive attitude and the way you are looking at life. Lots of us are blessed that it’s not worse. Pray you have an easy road as you beat this stuff.
I agree with you that it is up to the patient to find out his options and talk to the right doctors. My first doctor (a urologist, of course) was ready to sign me up for an opening he had on his DaVinci machine in two weeks "otherwise you'll have to wait a few months." Of course I left and never looked back. I'm all about patient empowerment now. Fortunately, many of the doctors I meet with with patients are pretty good at shared decision making, and few are into paternalistic decision making. I wrote a few articles a while back about picking the right doctor, managing them, and getting second opinions:
Agreed. It is sad that some medical providers give bad advice, either out of their own lack of research, or from wanting to pad the bottom line. It is ultimately up to each of us to do our own investigation and research, and be allowed to participate in the decision making process for our treatment plan. Don’t just blindly accept their advice without getting a second or even a third opinion.
Like most people I was diagnosed by a local urologist, who basically told me I had oligometastatic Stage 4 PCa, they could give me ADT, and I should have 2-3 more years...no mention of second line therapies, clinical trials, etc. I asked the group’s radiation oncologist about SBRT/IMRT on the one bone lesion. He said they only do radiation for Stage 4 patients for palliative purposes. That was it. I immediately started researching Stage 4 options and facilities that had M.O.’s who specialize in PCa. Brought it down to The Moffitt Cancer Center in Tampa, The Mayo Clinic in Jax, M.D. Anderson in Houston (too far from home), and (distant 4th) Florida Hospital In Gainesville and Jax who had recently built a new proton beam facility in Jax. All of their treatment programs were based around getting proton beam therapy, which was expensive and likely not very productive for me. I contacted all of them by phone to discuss my case and what they could do for me. I drove to all of the Florida facilities to see how they looked, and assess everything from location and travel logistics, parking, the inside & outside appearance of the facility, waiting areas, get an idea of waiting times and how the reception staff talked to the patients. I opted for the Mayo. A little bit further than Moffitt, but I got a better “vibe” from them. Thus far, they have been amazing, not just my M.O., but the whole team from schedulers on up. They have a fantastic patient portal, great interaction not only within the Jax Mayo, but all 3 Mayo facilities, and as of last August, a brand new Hematology/Oncology building. If I should ever feel they are failing me, it will be up to me to discuss it with them and make my own decision as to staying with them or finding a new treatment source.
Bottom line. Do your research, and Be proactive in all aspects of participating in your treatment plan. Best wishes to NYMets and to all of you facing the same choices. 😎
Inspiring post, looking at all dimensions does reveal commitment. The idea is not for PCa patients to luck out, because of where they live or who they know. There's a genuine prostate cancer care center nearby, that will have the best interest of the patient's outcome, no matter the initial diagnosis.
I'm thinking, Airbnb/Uber like services to target/access best care possible, regardless of personal research savviness and/or location.
Really, folks, when you book an airline flight, do you research pilot training and experience, plane age, maintenance and technology? No you pick the cheapest price from point a to b...
It sounds like you did not investigate (were not told about) other options, but did you have the RP they recommended? I hope you have a better go of it going forward.
No, went on Active Surveillance for five years, after a few biopsies, Gleason Score 6. But, was not so "Active" the last few years and then the prostate cancer metastasized, too late for brachytherapy...
I'm with Chris Sweeney at DFCI. Smart and likable, but I find he is "by the book" and does not think much about some of the alternatives or complementary possibilities. I understand the evidenced-based institutional constraints.
Yes, I can talk anything with him, like Dr Myers, BAT, ADT3+, add chemo?, IADT, Avodart, Metformin, etc., and that I'm not comfortable waiting around for castrate resistance. He knows all of this, responses quickly, told me of some discussions with Dr Myers.
He replies, we're on the same team, calls me the boss, but he said, current treatment is ADT2 (Lupron and Zytiga) now, PSA dropping every test, first let's discover what my nadir is...
Thank you for the information/endorsement for Dr. Pomerantz. I have been considering looking elsewhere for a while - not because I don't like DFCI or Dr. Sweeney, but because I feel like we could maybe be doing more or different things. It also surprises me how isolated the docs seem to be from each other within the same institution - for example, I showed Dr. Sweeney a paper abut Duasteride and Abiraterone that one of his colleagues co-authored and he said "very interesting." It sounds like they all have slightly different approaches and do not necessarily compare notes.
Dr. Sweeney is strictly a phase 3 clinical trial evidence-based guy. Nothing wrong with that. He knows what the big trials/studies show and sticks with that. Perhaps it is just my own illusion of validity and grasping at straws for something more definitive, but I want a doc who is at least open to a broader more comprehensive discussion.
I started on Casodex and Lupron Dec 2017 and talked him into switching me to Zytiga plus Prednisone plus Lupron in Sept 2018 presuming that if Z + P was good for multiple mets it might be good for a few mets too ("we really don't know," he said, "but let's switch now and stop in six months and see what happens.") A couple months later some papers came out that suggested early Z + P was also beneficial to hormone-sensitive, oligometastatic guys like me. I go in for labs again in a couple weeks and then stop the ADT in March. Fingers crossed, knock on wood and all that the PSA remains undetectable. If not, I think I am inclined to go talk to Dr. Pomerantz and continue with him. Stay within DFCI, but new doc maybe.
Well, if Dr. Sweeney will endorse stopping ADT, to "see what happens", then he's edgy, not a Dr Myers, but not mainstream.
Dr Pomerantz is open to IADT, but only after of 18 months of successful ADT history.
I use another doc as well, Hematology Oncologist, Dr Yalamarti, at Lahey Health Cancer Institute, Winchester Hospital. She is strictly mainstream, phase 3 as you described. It's just that Lahey Health is so accommodating, much easier when getting pain meds prescriptions, blood draws and Zometa infusion than going downtown. But, Dr Yalamarti sees all cancer patients and not in the league with DFCI staff.
Dr Sweeney PubMed search: Sweeney CJ [Author]
Plenty of research papers
Dr Pomerantz PubMed search: Pomerantz MM[Author]
Not as much as Dr Sweeney
But, these research papers don't gauge how they practice.
A member here, Bob10, goes to DFCI, but is seeing a "junior" physician:
Thanks. All good information. I also just made the connection with the other member you refer to. Regardless of who we see, the nice thing about this forum is that we can compare notes of visits and experiences within and among different organizations to learn from each other and each other's doctors. Great resource.
You have to ask a lot of questions and not blindly trust anyone for most encounters with the US Healthcare system. And probably with most others as well.
The most common failings with Prostate Cancer:
1. They do a poor job, or no job in educating you as to your options. My initial urologist at a teach hospital, in my response to "what about radiation treatment" said something to the effect yes have some good people here. You should go talk to them. And then he started scheduling the surgery. LOL I left and didn't return after that performance.
2. They poorly, if ever, educate you about side effects. If anything they intentionally mislead you. It is in their economic interest to do so.
One iron clad rule I propose, is to always get 3 opinions prior to pulling the trigger on any treatment or non-treatment decision.
You got me thinking about my early decisions back in the summer of 2016. First thought that comes to mind is don’t trust the biopsy and insist on an MRI. My biopsy was negative which surprised me because I knew something was very wrong. I insisted on an MRI which took months to get approved. The MRI showed undeniable proof that it had spread beyond the prostate. I dong understand why an MRI is not part of the standard process when looking for cancer when PSA is high. I’m sure is comes down to cost. Ridiculous!
You are exactly right about the mri. I was a few days from the surgery when my surgeon said he needed an mri. Out of the prostate and inoperable. So they do use them. Why not first?? Wasted a lot of time talking to other surgeons like I had the ability to judge them in the first place. Moved on to a big cancer center. Will live or die which what they do. Starting radiation next week. Had my first balloon installed by a beautiful 27 year old radiation tech. I can tell you the hormone therapy is doing what it is supposed to. Not a twitch.
We like many went to our Urologist when my husband was DX with a G7.
My husband was young and we panicked as we just wanted the cancer out.
As many have said you can't look back at ones decision, however for us my husbands cancer had already metastisized. Dr. thinks Roland had cancer for 10 years before DX.
and thought it was contained in the prostate bed. No Dr. knows that!
If only there was a necessary class with cancer support groups one had to take before making any decision to educate one's decision..
Two of the top urologists in Orlando each had prostate cancer themselves. One doctor chose to have RP and Lupron injections. The other chose to have 42 radiations and Lupron injections. Eighteen months later both doctors had passed. They both had waited too long to start their therapies. So I can not say one therapy is better than the other, but I can say that the sooner one starts the better the results. These doctors were well aware of the consequences of waiting. I started in 2007 with 42 radiations with no metastasizes. Then in 2011 I had a bone scan and found metastases. I had 30 more radiations and started Lupron every 3 months with one month of Casodex. I stayed on Lupron (Eligard - generic) for 6 1/2 years. I has been 9 months since I have had any cancer therapy and I do not have any signs of cancer at this time. My PSA is 0.006 and my T count is 11. I feel a little better every day and I am very grateful for all the men who have given their lives to help find a cure for this horrible disease. So make a decision and follow it and above everything else just keep truckin'.
And THAT'S why I'm here - to listen to my educated peers...and you are definitely one of them, NY. When this horrible adventure began for me 30 months ago, I was lucky to have some medical background in emergency medical services so that I could keep up with all of the medical banter and could have some good discussions with my knowledgeable urologist prior to seeing my oncologist. I was also lucky enough to have encapsulated prostate cancer (no apparent local spread and only one lymph node), but with bone mets peppering my skeleton - including some really big ones on my neck, spine, and pelvis - aggressive treatment was immediately on the table. Radiation, chemo, started right away, and after a few weeks of bicalutamide, I was on Lupron. To me, this was THE course, but I saw a lot of my peers at the time flailing for answers.
I view doctors like I view a sports team roster - I need smart players and winners capable of calling a play. And while I view my last couple of "seasons" as being very successful, a creeping PSA took me to the next logical step of including Zytiga just this year. Since I am looking ahead to the next choices and decisions after Zytiga, I anticipate changing up my current oncologist simply because she doesn't quite seem up with the more sophisticated or newer advanced PCa treatments. I'm meeting with another oncologist next week to do an evaluation, and maybe I'll pick him up in free-agency! - Joe M.
I did have an initial Urologist (5 years ago), that wanted to schedule surgery, was not comfortable going with it. So, did some research, first, learned my Gleason score of 6 was not even considered cancer. Then, after more research revealed a current concern, that Urologists are over treating, using spiked PSA to convince (frighten) patients into surgery.
So, called (have Aetna PPO) Dana-Farber for second opinion, got scheduled visits with an Urologist and Oncologist. After the visits and diagnostics, they both said surgery, nothing else!
Now, after 5 years of Active Surveillance, hello (09/11/2018) PCa, PSA 1000+ Metastatic, Stage 4 Dx.
Dr Mark Pomerantz (Dana-Farber) is my Oncologist now, because I'm enlightened, did the research on physicians, regardless of institutions.
The first visit, an assistant, a Medical Oncologist sat with me and went through all visits and diagnostic tests from 5 years ago to present. And if I had any other medical encounters, in other states (took 45 minutes). Lahey Health Systems and Dana-Farber publishes medical records to Massachusetts Health Information Exchange (HIE), thus all records were available.
Mark and his team have been treating me fir the last six years. His approach has really been bases in my goals. Maintain a high quality of life, while extending it. Will spend time with you to answer questions and discuss treatment options. Always looking for promising trials to improve treatment. I literally trust him and his team with my life. A minor example is i am scheduled to do some pre trial scans. The trial administrator turned it into an all day excerise. Without contacting them, his team made some adjustments to make the day shorter.
I never knew what a PSA test was. Had yearly physicals with the GP plus yearly physicals required for my place of employment. Rarely ever got sick. Worked 50-60 hours a week. Got my first PSA test a week before I was hospitalized. Not a good feeling when your family comes to see while you're getting blood transfusions to stay alive. They came to say goodbye. PSA was at 800, cancer spread everywhere, hemoglobin? was at 3, was supposed to be at 13.5. Now PSA is at .1. An MO found me when I was in the hospital and I relied on his expertise. Forget the past and enjoy each day. Eat right, exercise and enjoy a nice bowl of ice cream. Life is too short..
When my PSA went from 2 to 4 my doc wanted me to go to a urologist. I had a friend who was still suffering from post RP complications so I said do I have to? He said well we can watch it for a while. Two years later it went to 6. I had moved to Fl. and went to a local urologist who did the biopsies. 4 of 12 were positive and 2 were 100 percent. I looked at all the options and decided on RP and went to Dr Patel in Celebration for the surgery. He told me at the time I had a good chance to need RT because of the 100% biopsies. So after to much to discuss now I am at DF on Zytiga, Lupron and Predinisone hoping for a cure .
My Dr. is Atish Chaudhrey.
When I left UF Shands In Gainesville and I told my MO what I was doing he said wow very agressive treatment. All he and another RO I went to in Ft Lauderdale wanted to do was put me on Lupron which I knew had didn't last forever with a Gleason 4+3 .
Point is and I think about this too much. Where would I be if I just went to the urologist to begin with? I am now 4 years in.
We all make decisions with the information or lack there of, that we have at the time and then have to live with those decisions.
Another vote for Dr Pomerantz at Dana. Went through many docs over the years (23 so far! Knock, knock!) I see him now. He DOES listen, and will collaborate with his patients. Keep in mind all docs operate within the set of rules dictated by that hospitals Internal Review Boards. They can't stray too far from accepted norms, but do have some flexibility.
Good luck! I see Pomerantz again in the beginning of March.
Cancer2x----are you fighting cancer for 23 years or have you seen 23 doctors so far ? If its the doctors, then how many years have you been fighting cancer ? Thank you.
I have been fighting cancer for about 12 months now and have seen about 14/15 quacks already.
I have been fighting cancer(s) - I have two Primaries - since 1995, almost 24 years. I had a RRP in 1996. BCR in 2005 after 9 years. PSA slowly (thankfully) climbing, currently 0.43. Waiting to decide on any further treatments. 23 years, and still here. It can happen!
I have been avoiding treatment side effects so far, but may need to decide to do something else shortly, dunno. But as slowly as my PSA is climbing, I could probably wait for quite a while to do anything else.
I had one penile nerve supposedly saved at surgery. Still 100% 'Profound' Impotence, and stress incontinence.
So for ME, in MY case, RP surgery failed, and so-called "Nerve Sparing" failed. NO confidence in any doctors at this point!
Noone has really addressed the impotence issue at any of the hospitals I have gone to - they appear to not want to deal with it. After 23 years of total impotence, I am trying to set-up an appt with Dr John Mulhall at Memorial Sloan Kettering in NYC after reading about him here, and finally watching a video he has on the net, although I don't trust ANY doctor to get near my crotch with anything sharp ever again! We'll see how it goes. MSK at least has a Penile Rehab protocol in place. Dana Farber offered to have me see a female shrink to talk about the issue! RRiiiiight!
Best of luck to you. You CAN hang around a long time with this disease, although not without some impacts.
Amazing history, feel honored that we both have the same Oncologist!
There's no such concept of "Total Care" patient management with PCa. Actually, asked the Urologist about ED after RP, got the "canned" response: "With the da Vinci Surgical System, nerves sparing results are excellent". For some reason, my first thought, was - doc keep your day job because you'll never make a buck in sales. So, as mentioned earlier, ran away from this trap...
I had a similar experience at Siteman in St. Louis. Reputation is fantastic, but I felt I'd been sent to the waiting room for Hell. And the doctors I encountered were terrible. Emotionally cold, and even had one doctor from Puerto RIco tell me that they couldn't fit me in their schedule for brachytherapy because their budget wouldn't allow it and that I should remember that the next time I went to the polls to vote. I did eventually get my treatment but I fired that doctor shortly thereafter.
Can't find the urologist's name, have it somewhere. But the oncologist at the was CHANNING YU M.D.,PH.D, which gave me a creepy feeling of incompetence.
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