Two serious questions, since so many people have their lives on the line with PC:
1. Many men develop PC during their lives. Why are there so few doctors who specialize in PC?
* I have advanced PC, and I have spoken with 5 doctors, including a second opinion at MD Anderson in Jacksonville, FL. I have yet to speak to a doctor who focuses on PC only. Also, I don't see that in my future I would speak to such a doctor, unless I got on a plane and flew to Minnesota, or whatever.
2. Is it this lack of specialization (questioned above) that leads to situations like the examples shown below?
* Many RP's done without recommending a PSMA PET, so that men end up finding distant metastases AFTER their surgery versus BEFORE their surgery. That just seems stupid to me.
* A Urologist recommends Casodex be continued after a 6-month Eligard injection. The MO says to discontinue the Casodex 30 days after the Eligard injection.
* Standard of care not seemingly agreed upon, even after PEACE-1 study seems to make it pretty clear.
* One MO says a biopsy of a remote tumor (not yet identified as metastatic spread from malignant prostate) is NOT needed. Recommendation is to wait 2 months post-ADT to make the determination. Another says, let's take a biopsy. Neither recommend a PSMA-PET as an option.
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Skipper238
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The first question is a good one. I think there are at least a handful of MOs that specialize in prostate cancer. There are the same names that come up in trials and conference, or are listed in papers, but it does seem to be a small group compared to the need.
As for the second part, that is an unfortunate part of human nature that isn’t limited to this field. I’ve encountered it my entire life. It was second grade when I first realized that my teachers could be wrong. My teacher asked what do you get when mix hot water with cold water. I answered warm water. She said no, you get hot water. I remember thinking immediately, that’s wrong.
I’ve worked with a lot of PhDs that have a hard time seeing obvious relationships, and others whose egos get in the way of excepting that their view might be wrong. I have mostly women doctors and am glad for it. They seem to be open to being questioned without having their egos hurt.
When I go into an appointment, I see my primary reason for being there to open the doctor’s mind to new thinking. Every resident or fellow that I talk to, I try to help them learn how to analyze a problem and look for new solutions.
I do this because I’m relying on them to save me, and I want them fully engaged. They are the ones with the training and access to research facilities, so I need them figure this out quickly.
Too many doctors spoil the treatment. MO says chemo, RO says radiation, etc. There are no cut and dry answers. Find a good urologist and discuss treatment options. Don't let him bully you into treatments. Demand informed medical treatment.
One of those days when I am too run down, tired or something to put all my thoughts into words but one thing I want to point out in my humble opinion.I think your cancer caregivers suck.
* A Urologist recommends Casodex be continued after a 6-month Eligard injection. The MO says to discontinue the Casodex 30 days after the Eligard injection. MO WAS CLOSER TO RIGHT
* Standard of care not seemingly agreed upon, even after PEACE-1 study seems to make it pretty clear. NO AGREEMENT--NUTS
* One MO says a biopsy of a remote tumor (not yet identified as metastatic spread from malignant prostate) is NOT needed. Recommendation is to wait 2 months post-ADT to make the determination. Another says, let's take a biopsy. Neither recommend a PSMA-PET as an option. CRAPOLA
Can you be a bit of your own advocate or are your Dr's being authoritative for lack of a better term ?It sounds like they aren't explaining why they are thinking the way they are ?
1. There are many oncologists and urologists who specialize in urogenital cancers in men, which includes primary cancers of the prostate, bladder, urethra, testicles, and penis. There are also many urologic oncologists, who limit themselves to the first three. Most of those doctors practice prostate cancer primarily because that is the most prevalent of those cancers. Next month, ASCO will be holding its annual Genitourinary Cancers symposium which is well-attended with the first few days devoted only to prostate cancers. It's a much bigger field than you suppose (because cancer of the prostate is the most prevalent non-skin cancer). But only the large tertiary care institutions will have those kinds of specialists.
2a. PSMA PET - patience! It was just FDA approved this year, Medicare approved in the last month, and became widely available in the last couple of weeks. Still, it is the fastest roll-out I've ever seen, and the first approval of a PET scan for high-risk men. Bone scan/CT have been around for a long time, are cheap and easy and widely available. Because all clinical trials of treatment safety and efficacy have used them, they should not be supplanted right away, but should be utilized concurrently for some time.
2b. The only reason to start Casodex before Eligard is to prevent flare of metastases. It adds little to ADT after Eligard inhibits testosterone. MOs are the ones who deal with medicines for cancer, urologists are usually just surgeons. For men with advanced PC, their primary doctor should be an MO.
2c. PEACE1 hasn't even been published yet. Peer-review publication is a necessary step before any treatment becomes standard-of-care (SOC). Insurance and Medicare may not agree to pay for the protocol until it is SOC. But I have seen them bend the rules for several oncologists with advanced PC patients.
2d. If a supposed met shrinks after beginning ADT, it is almost assuredly prostate cancer. That "test" is better than a PSMA PET, which can have false positives and negatives. Biopsies are invasive and unless the lesion is large, the tumor can be missed.
Thanks for your detailed reply, Tall_Allen. I'll reply to a couple of your points.
1. Your text follows: "There are many oncologists and urologists who specialize in urogenital cancers in men, which includes primary cancers of the prostate, bladder, urethra, testicles, and penis. There are also many urologic oncologists, who limit themselves to the first three. Most of those doctors practice prostate cancer primarily because that is the most prevalent of those cancers."
My response: This is good for me to learn. Maybe I should have known this, but I didn't. I would have liked to have learned it from my general Urologist and/or general MO versus learning it from you. But, I have the strong impression that they are probably not going to do that because of whatever financial motivation may exist, or pressure from the health system they work within or ego or whatever.
2d. Your text follows: "If a supposed met shrinks after beginning ADT, it is almost assuredly prostate cancer. That "test" is better than a PSMA PET, which can have false positives and negatives. Biopsies are invasive and unless the lesion is large, the tumor can be missed."
My response: OK, but isn't there also some risk in waiting 2 months to determine if the other tumors are prostate cancer metastases versus lymphoma, in the instance of lymph node enlargement? If a biopsy were to determine lymphoma sooner than the 2 months of Eligard working and a new scan taking place, then the much different PC treatment course would kick-in earlier. Wouldn't this then potentially prevent metastatic spread that could take place within the additional waiting period for Eligard?
2. There is nothing safer for PCa than beginning ADT immediately. It will immediately stop all growth and spread. The risk of a second primary lymphoma is very very low, unless you have a prior history of lymphoma. The main other reason for an enlarged lymph node is infectious disease. The much bigger risk is waiting to start ADT until it can show up on a PET scan or big enough to biopsy.
Also, after rereading my previous reply, it seemed a bit muddled. So, to help with clarity, I’ll just say that I am on an ADT treatment path. I had a 6-month Eligard injection, 3 weeks ago. I would not have considered waiting to start ADT. So, either by biopsy or tumor shrinkage identified by my next scan, I will soon know definitely if my lymph nodes are due to metastatic spread. Until then, I will work under the assumption that they are. Thx.
Can you share a link to a source regarding Medicare approval, please.
I asked PCF twice and received no response. Or, please share a specific CPT code…then I can look it up.
I try to help other people on the insurance aspect of prostate cancer to complement you and others who have and share so much knowledge about the medical aspects. (In the absence of a National CMS decision , then decisions will be by the local ( regional) contractors.) Thanks for all that you do for so many!
the Group 1 codes are A9593 at UCSF and A9594 at UCLA
For the new FDA approval of Ga-68-PSMA-11, which will be available at 140 more institutions, I don't think Medicare has yet assigned the billing codes. But you can check with Telix Pharmaceuticals about their product TLX591-CDx, which they are calling "Illuccix."
I know the feeling! Two years ago my MO who had kept me alive for 30 years from stage C rectal cancer wanted to start me on Lupron. My world class PO at NYU said I was too young at 72. 6 months later my PSA jumped from 2 to 4 and I started my Lupron, my PO told me at my next visit he was not treating me anymore!
I think what I'm trying to say is that it just seems to me that there is plenty of room for a new medical specialty. The doctors could be called "Prostate-ologists", or whatever. We have specialists for lungs, heart, brain, kidneys, eyes, etc.
I say, bring on the Prostateologists! 🙂
After being diagnosed with Prostate cancer, a Urologist would refer patients to the Prostateologist.
The initial conversation with the Prostateologist might go something like this:
"Hello Mr. Skipper patient, I am Dr. Helpu. I am a Prostateologist. We are going to work through this to the maximum benefit for you. I concentrate my practice on Prostate issues ONLY, and I spend a large portion of my time focusing on advanced prostate cancer such as yours. I will provide resources for you to study. We will discuss possible clinical trials. I also want to point out that I am also a board certified oncologist, specializing in prostate-related chemo therapies. I will help guide you through chemo, if that is needed. If radiation is needed, I have hand-selected a Radiation Oncologist to assist me in my practice, and I will want you to meet her.
Now, Mr. Skipper, let's start with making sure we both have a complete understanding of what your current condition is and is not, and let's talk about what we're going to do about it -- that it, how are we going to help you with this situation that has been thrust upon you."
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