Why would a urologist say he never met a stage 4 prostate patient survive more than nine years. Maybe he sent his serious cases to an Oncologist.
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Drcrunch
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Last time I saw a urologist it was to do the biopsy and implant the gold seeds for radiation targeting, after that it was strictly oncologists.
He is a buffoon. My oncologist is nothing but Prostate oncology and he has people doing great stage 4 10 years later and more. Find an oncologist who specializes in Prostate cancer. Preferably at a major teaching hospital.
The only one we found that does only pc is At mdandersen. We live in Atlanta and being treated at emory winship, not happy with them . The np , who seems to do more than the doc, told us mo do not do just one type of cancer. We told her we saw an oncologist at mdandersen that does. It seems at Winship they don’t specialize in one cancer.
Presumably the patients of such a urologist wise up and leave him.
I never returned to my urologist. Why would I? He had little depth of experience with cancer, and all my issues were oncological, not urological.
Because the urologist is a douchebag who apparently skipped all of his medical school classes on bedside manner.
The local oncologist who delivered my Stage 4 PCa diagnosis in May 2015 told me and my wife the only option I had was Lupron and bicalutamide, and (I really believe he thought he was being optimistic) cluelessly added that I may have two or three more years to live. His remarks had my poor wife sobbing uncontrollably with his rather casual, clinical, and detached attitude about my “death sentence,” and his inability to offer me any viable treatment alternatives, or even a referral to a PCa specialist MO. He even dissed the idea of looking for clinical trials with a remark (I don’t recall his exact words) alluding to me not wanting to be the equivalent of a lab rat. The radiation oncologist in his practice group totally dismissed the possibility of zapping my one bone tumor on my inferior pubic ramus without any explanation other than “we only do radiation on Stage 4 patients for palliative purposes to relieve pain.” Needless to say, I dumped them immediately, more for their callous attitude than their incompetence. I did my own research, and found my Mayo Clinic MO on my own. I’m at the 3 years mark that the clueless urologist gave me, still alive and kickin’, feeling pretty good, PSA still undetectable, no bone pain, and my one bone tumor doesn’t even light up the PET scan.
We have several Stage 4 guys in here who have been around well over 9 years after diagnosis. I plan to be one of those guys.
Six years ago this November in Phoenix, I was diagnosed stage 4, two pelvic bone mets, G 8, (76 yrs. old right now) and received almost verbatim your death sentence. And I was put on the same 2 drugs. My wife heard it two years later when she insisted on getting it straight from the urologist. We went home and she insisted I start doing research on complementary medicine strategies that could stop prostate cancer. I got myself into a research mode and identified a supplement, and then a few months after starting the first one, I added a second, and so on.
We moved to Florida in 2016 and my doctor, a urologist, stopped the Casodex and I have stayed with Lupron. My PSA in Phoenix was low and here in Florida, with some new supplements added to my regimen, it has started trending lower. Since fall, 2016 it has remained consistently at 0.06. My urologist considers it the work of Lupron, but does not explain why after more than 5 years of Lupron it should take my PSA to an even lower level. I did go to a leading Cancer Center here in Tampa and had a bone scan and an MRI. The two bone mets can no longer be identified.
The MO found me a boring patient and told me to come back when I was resistant. My original death sentence expired in the fall of 2017, so my wife asked him how much longer did I have. He looked at me and said 5 years. An assessment that did not strike me as science-based. We left puzzled and I am happily back with my urologist.
You are right to plan for at least 9 years. There are cases of Lupron working for 17 years. And stage 4 patients living more than 20 years.
I spent a career in healthcare, both management and medical software. Regrettably, there are many in the medical profession that should have chosen another career - perhaps accounting.
CAUTION: I have had contact with Mayo for business-medical reasons in my years in software. They will not in my experience accept natural supplements as a contributor to improved cancer treatment.
My AZ urologist was also opposed when I first asked about them at the diagnosis discussion in 2012. It was alarming to find so much positive nutraceutical research in the cancer journals a couple of years later. I didn't tell him when I started taking IP6 following the extensive research of AKM Shamsuddin at the Univ. of MD Medical School. In the summer of 2015, after seven weeks of high dose IP6, he got a low PSA report and asked for a DRE. He could not palpate any nodules in my prostate. When I arrived in FL my urologist could not understand that entry in my medical history. So he asked for a DRE. Now that was a DRE for the ages. He agreed there are no suspicious nodules any longer. Dr. Shamsuddin's book discusses cell normalization ( available at Amazon.com)
Have a happy life and ignore the dolts you may encounter.
Your happy vegan, CalBear74
• in reply toCalBear74
Good luck on continued undetectables. I can explain, if you would listen.
As a tease: 0.06 is the same as less than 0.1. Casodex Withdrawal Phenomia.
Continued success in your fight
GD
CalBear74• in reply to
The time between the cessation of Casodex and the dropping to 0.06 was a year at least. In the interim I had two PSAs that ran 0.42 and 0.45. How does this accord with your causal explanation?
CalBear74• in reply to
This article is helpful on understanding this Phenomenon.
ncbi.nlm.nih.gov/pmc/articl...
However, I don't seem to fit the profile. The reported median time for the decline is 5 months following cessation. As I mentioned, mine came a year after cessation and there were two PSA measures which were typical for me. One done by my urologist and one at a leading Cancer Center. Additionally I had the first PSA measure of 0.06 in Sept. 2017. The second in March and surprisingly it was exactly the same: 0.06. Both surprised my urologist who never mentioned any Withdrawal Phenomenon as an explanation. Also, I have not experienced a significant increase after dropping to a nadir/low point. I should have regressed to a higher PSA after the first 0.06 last September if I were following the Phenomenon pattern, according to the study I have read.
A better explanation is my addition of Transfer Point's #300 Beta 1,3-D Glucan in spring of 2017. See Dr. Vetvicka's 3rd edition of his "Beta Glucan: Nature's Secret." and review his discussion of the experiments comparing the various types of glucan and the different brands. After reading his book I switched to Transfer Point and I believe it has made the difference reflected in my lower PSA numbers. Natural immunomodulation is not well understood by men having PCa.
• in reply toCalBear74
PS. Oh my drop to undetectable was May 2006. I have registered 49 more since. Continued good luck.
GD
CalBear74• in reply to
That’s an impressive record of undetectable’s. What do you attribute that to?
How any pills of this supplement are you taking a day?
I do not take pills; I take only the powder because my body needs a massive dose to gain traction on my Gleason eight cancer cells. A total of 12 scoops a day gives me the minimal traction it seems. I have taken more and probably will again a few weeks before my next PSA test. Of course, I take numerous other supplements so sorting out Cause-effect is very difficult.Keep in mind that IP6 is a dose-dependent, time-dependent drug. The more you take and the longer you take it the more effective it has been in numerous studies.Please read Dr. Shamsuddin’s text, available at Amazon, to fully appreciate the potency of IP6. Also, you can go to nutrition facts.org and view the videos on phytates, the old fashion term for IP6.
Hey, CalBear...thanks for sharing your “parallel course” story with me. Keep doing what you’re doing. Obviously it is working very well for you, and I’m very happy to hear that. Kudos to you, my man!
With your career background I’m sure you have seen both the best and worst of the medical system. KIt sounds like you went to Moffitt. I live in Leesburg, 35 Miles NW of Orlando, and checked out Moffit, which is 90 miles from me (50 miles closer than the Mayo in Jax). But The Mayo was much more responsive to my initial inquiries than was Moffitt, and I got a better “vibe” from the Mayo than from Moffitt. I’ve had a very good experience with them thus far, but will keep the Moffitt in mind if anything changes in my situation, or my satisfaction with the quality of care I am receiving, that keeps me driving up I95 instead of down I75.
My MO at the Mayo is Chinese, knows of all the supplements I am taking, and hasn’t given me any negative feedback about any of them. I hope it’s not culturally insensitive to say, but I think it may be because Asians tend to be more open to alternative, naturopathic, and holistic therapies than a Western doctors.
I’m 11 years in at this point...have no reason to assume I’m going anywhere in the near or not so near future...plan on being around a while...sounds to me that someone needs to suggest to this “doctor” that he might want to consider changing specialties, or careers...just my opinion...
19 years and counting, see a summary of my course of treatment since diagnosis in 1999 in my profile. With prompt treatment from good prostate cancer specialists (medical oncologist, radiation oncologists and palliative care) You probably can look forward to many more years with a decent quality of life. Hang in there it’s not over until you give up.
Congratulations! You are my hero!
So Drcrunch it appears that your urologists makes predictions scientifically, he picks out of a hat. Drop the A-hole and take the advice of several posts here and get yourself an oncologist that specializes in Pca.
Good Luck and Good Health.
j-o-h-n Thursday 05/24/2018 5:36 PM EDT
Your urologist is obviously not up to date on advances in PC treatment. Urologists are fine for initial common protocol of lupon and/or casodex but as soon as either one fails they are out of their league.
I have to say the urologist I visited at the beginning was a pretty sad case. I couldn’t wait to get away.
A urologist would say he never met a stage 4 prostate patient survive more than nine years because
a) The urologist is a jerk
b) The urologist doesn't pay attention.
c) Once the cutting is done, the uro doesn't follow patients after initial recovery. Uros need to make boat and mortgage payments, and a man without a prostate isn't profitable.
You can tell someone is a urologist, but you can't tell them much.
My first urologist gave me 5 to 10 years and he was at Johns Hopkins. That was 25 years ago. First warning about doctors, Don't let any of them tell you how much time you have.
What was your treatment?
I had the orchiectomy at Johns Hopkins.
What does bother me is when some docs think you've lived pretty long and then assume, well, you've had a good run. Or, people, friends who are checking in to see if someone is dead yet. For this reason we don't tell people.
Funny you should say that. It is exactly what my doctor said to me; "you've had a pretty good run (26 years)." It almost sounded like 'nice try kid but your time is up.' I hope that is not what he meant. I will be 73 next month and I am not really to roll over yet.
Good for you... Here's to strong health and great strength... oh, some grit and lots of things that raise your energy... <smile>
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