Husbands urology practice does surgery, radiation, ADT but does not list Abiraterone. Their website says they will refer us out if needing chemo.
Thoughts?
Decioher .93 - results said Abiratero... - Advanced Prostate...
Decioher .93 - results said Abiraterone was effective. Can people who use this enlighten me?
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Lastchance75
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First of all abiraterone is not chemo. Secondly, and I suspect many here would agree, don’t trust a urologist if you have cancer. Find a good medical oncologist.
Abiraterone is not chemo, it's a type of intensive hormone therapy.
Your husband has high-risk localized PCa, and can be cured with radiation+hormone therapy. I suggest he talk to a radiation oncologist, and follow the POP-RT protocol:
prostatecancer.news/2021/08...
I absolutely unequivocally agree with you. But my husband will not do it. He loves his urologist ,(surgical oncologist ha!). You’d have to know George. Extremely rigid just wants it out. I’ve talked to him adinfinitum about his decipher score and that it means that it’s coming back dammit but to deaf ears. You are just going to have to trust me on this.
Btw I’m aware that Abiraterone is a hormone. My post was unclear and did not explain well at all. After studying the nccn protocols yesterday and reading Patrick Walsh’s book today, and studying Dr Gieslers practice website , I see that his practice has a lot of what George will need post RALP ( although it does say if he needs chemotherapy they will refer him to somebody. Btw the radiology department there is also awesome. He does know and says he’s willing to do whatever it takes if it comes back.
What I can’t get over myself is the reoccurrence rate chart and mortality of guys his age with his decipher .93.
I am so grateful that you replied. You can give me as much brutal feedback as you want, I welcome frankness. But I can’t say anymore about husbands thinking.
I've run support groups for 13 years, and almost every newly diagnosed patient says, "just cut it out" at first. My experience is that that is only an initial fear reaction, sometimes called "cancer panic." It diminishes with time and education. I have come to believe that doctors should enforce a moratorium of at least a couple of months on patient decisions. There is no rush and no risk in waiting:
prostatecancer.news/2016/08...
If he rushes into a decision, I can almost guarantee that he will later regret that he rushed.
If you can't get him to slow it down, the best he can do is take it one step at a time. When he has a recurrence after surgery, he will need salvage radiation with adjuvant hormone therapy. Of course, urinary side effects will be much worse than if he'd had primary radiation (without a prostate, the healthy tissues get the full brunt of the radiation). Hopefully, surgery will not spread his cancer.
are we now saying that RP can actually spread cancer,,,,just as some worry that a biopsy will do the same? I don't recall your previous mention of the scary proposition that RP can actually spread cancer?
That is a myth, as someone who has performed literally thousands of biopsies over many decades. Please see my separate reply. This is one of the problems of laymen giving advice and recommendations to patients.
spreading by biopsy is NOT what I believe.....but many men do fear that, no matter the truth!!!
It not necessarily spread. Some cells get loose for lack of better terms. I personally think that is from the surgeon who is just not as top notch as he thinks he is. Happened to me. Pmsa was contained to prostate but after surgery still .14 psa so off to radiation and now on abbi, Orgovyx and prednisone for two years. Anyway, I ditched the urologist and got a medical oncologist. I also have bladder cancer as well and have a urologist oncologist and both are at a NCI hospital here in SC.
urologyaustin.mystagingwebs...
If he comes to his senses and wants to at least talk to a radiation oncologist, I would recommend Neil Desai at UTSW in Dallas.
I’ve told him this bread that study in India, and read him your posts. He’s not going to change his mind. I am very sad but there’s nothing more I can do.
he doesn’t believe me when I explain the decipher test, that with a .93 score it’s only a matter of time before it. Comes back. Do you have something I can show him about this ? He is in complete denial. He wants to believe that Petscan no spread is final.
Look, there is ZERO assurance that ANY treatment will be a permanent solution in eradicating his prostate cancer. All studies do is show us that certain strategies offer a higher probability of great long-term results. Abiraterone is now being used by some Docs as part of combo treatment, but I think its use is still in the trial stage. Some studies have shown brachy boost with whole pelvic RT + ADT results in more hope for a great long-term result than does surgery alone or radiation +ADT.....results for the latter 2 were about the same. At least one or more smaller studies showed that an RT boost to an identified confined prostate cancer lesion/tumor, in addition to standard RT + ADT, provided results similar to brachy boost, with fewer urinary side effects. this is called SIB......simultaneous integrated boost. he would need to have an MRI-defined PCa lesion/tumor, and such a lesion would nee to be in a suitable area for a boost. My young RO was gung ho to pursue that strategy with me......Gleason 4+5, PSa Had risen from 8 to 13 over the 5 years since i had first visited a surgeon. Unlike most men, I was NEVER gung ho for surgery. I like neither knives nor needles!!!
IMHO, surgery/RP is NOT guaranteed to fail for your hubby...that, IMHO, would be a scare tactic. It is just that probability for one-time "cure" is higher with some other options. If RP works, it can be great.......no ADT, and , for majority of men, no long-term incontinence.....or at worst, 1 pad/day...for very minor dribbling. There was a time when RP/surgery was clearly superior to radiation, but now vast improvements in technology and techniques for prostate RT!!!
Of course, if it is important to one or both of you, discuss the sexual side effects that may happen with each type of treatment.
Well reasoned post.
Thank you Sir!!! I try......way too many hours Googling, Pubmeding the subject....learned a lot about what does or doesn't constitute proof of treatment re PCa or any malady!!!! To me the GREATEST shortcoming in the medical world is the BRIEF discussion with patients re potential side effects.......and also often inadequate discussion re probability of success for a proposed treatment.....then MD complaints that patients are asking Dr. Google??? But, those are systemic problems I suppose......inadequate number of MDs to allow time to better educate patients.....though a lot of education could be automatically generated and electronically delivered for each different malady. My RO claimed that he liked that I was a well-informed patient?
In my experience, the more skilled, knowledgeable and confident physicians like working with well-informed, logical patients. It makes their life easier. I found when talking with patients who were informed, you could use more medical terms that conveyed the more precise meaning instead of searching for an equivalent layman's terminology or explanation. Well-informed patients also understand that there are rarely miracle cures and that complications from procedures and treatments happen because everyone involved is human and this is an imprecise science.
I sometimes read, on this and other forums, people dispensing what amounts to medical advice to others who are in a vulnerable emotional condition. Yes, there are physicians practicing all over the world who are incompetent (rarely), never were stellar to start with (somebody has to finish last in the medical school class!) and/or haven't kept up with current literature and trials. But, if you go to a COE you are likely to be paired with a specialist who is none of these.
My daughter is an Infectious Disease physician/specialist at a COE. She will occasionally relate to me about a patient questioning (not in a curious way but more in a confrontational way because they have done "research") her treatment plan or diagnosis (this is a rarity). One of her colleagues gave her a coffee cup as a joke (she keeps it at home) that says "Don't confuse your Google search with my Medical Degree". Some people don't understand how much training specialty physicians have. My daughter spent 4 years in medical school, an extra year to get a Masters in Public Health, 3 years in Internal Medicine Residency, a year as Chief Resident, 3 years Fellowship in Infectious Disease. Twelve years before she was on Faculty. Consider Medical Oncologists that are frequently discussed on this forum. Four years of medical school, 3 years of Internal Medicine Residency, 3 years of Oncology Residency/Fellowship and, for those that specialize in GU (prostate) oncology, another year of Fellowship. So, many MOs have 11 years of training plus their years of practice and the experience and knowledge gained from such.
I understand people wanting to be of help to others in their time of need; that is laudable. But to assume they know more how to direct treatment to patients they don't know, better than treating MOs/ROs/Urologists (caveat-at COE and those who are highly skilled in private practice), is lunacy and arrogant.
All of us are unique. We have different co-morbidities and may have different goals in treatment (preserving high QOL over additional years/months of life, etc). Treating prostate cancer in its various stages has become very complex; it is not cookie cutter medicine. When physicians look at trial results and see that, say, 27% of patients responded better to a certain protocol than others, there may be a reason certain patients did or did not respond. It isn't one size fits all. You have to know the patient, the results of their tests etc. That is the art of medicine-it isn't "pseudoscience".
I hope everyone that is going through this ordeal/journey finds their best path.
I enjoy reading your posts. I can't agree with you more. The doctor/patient relationship is built on trust. The patient should be knowledgeable so the right questions can be asked and answers understood. However, the doctor should be steering/deciding the treatments, not the patient. There are too many variables that one needs to really understand to completely treat a cancer patient. I hired my MO to navigate my treatments. If I feel he's not performing, I'll switch MOs.
There you go! My thoughts exactly!
I am going to get a copy of that quote put on a coffee mug for my granddaughter.
You really hit the nail on the head. The years of study and continuing education is staggering and most laypersons are clueless until you see a loved one go through this process. It amazes me the amount of dedication and personal sacrifice it takes to be a doctor.
Thanks for so artfully pointing that out.
Maybe buy him a year’s supply of male nappies. And ask him is it fair to you that he will likely be both incontinent and unable to achieve an erection post surgery. Some need to be shocked into understanding. Sending hope that he comes to realise there are very good alternatives to surgery.💜
He doesn’t care. We’ve already order sample packs of all kinds of diapers. Btw I am 6 yrs post anal cancer, which was only stage 1 but I also have interstitial cystitis so I wear pads and have to severely watch what I eat or I lose bowel control, so we know how to roll with all that ). But thanks for your frankness yes that will not be fun.
This from NIH/National Cancer Institute under Myths and Misconceptions:
"Can cancer surgery or a tumor biopsy cause cancer to spread in the body?
The chance that surgery will cause cancer to spread to other parts of the body is extremely low. Following standard procedures, surgeons use special methods and take many steps to prevent cancer cells from spreading during biopsies or surgery to remove tumors. For example, if they must remove tissue from more than one area of the body, they use different surgical tools for each area."
As an Interventional Radiologist who performed thousands of biopsies using Fluoroscopy, CT, US and MRI guidance over more than 40 years, I can tell you it is extremely unlikely that biopsy or surgery spreads cancer cells. There are a few isolated case reports. It is very difficult for random cancer cells or clumps of cancer cells to survive outside the primary tumor. The significant majority die from various causes (lack of nutrients/blood supply, immune system, turbulence in vascular system). Some do survive and grow and that is metastatic disease, but only very rarely is the cause surgery or biopsy.
might help him to understand where urologists and oncologist come from. Urologist are surgeons. There training involves a lot of the time in the OR. They do not spend much time learning about drugs and their interests lies in surgery. Oncologist first start out as internist so they learn about all the medications used in patient care and about medical diseases and problem not related to cancer. Then they spend 3 years learning about cancer treatment and drugs. A small group then goes on to soecialize in prostate cancer. If I have a surgical problem I want a Urologist. If I want the doctor to consider medical therapy I want an oncologist.
wow people. Poster here. Thank you for all of your comments. Went to bed so sad after making yet another case for him to go over all this again with docs and him saying forget it. This morning, I found my husband looking at his decipher report. That is progress. I think all my husband can see is that pet says no spread. If I can keep on gently pushing about this being a really risky gamble, that a post Rralp will not find spread is too huge a gamble. Btw at 77 he’s not concerned with sex. He’s onboard with diapers. Btw, he’s a phd with 57 patents in electrical engineering so that tell you how hard it is to convince him of stuff. But he has not been really reading stuff for himself. If he would, he’s understand all this stuff better than I.
Anyway I fantasize about some amazing prostate doc writing an article explaining what decipher predicts ( he doesn’t believe that a .93 score says basically that there r probably cancer cells loose).
Also, fantasizing about a well written essay by some accredited person about life post RALp with reoccurrence and life with no RALP with reoccurrence. Those I think should be what he should be comparing ( because I think life post his possible RALP is statistically unlikely for him).
I think that you may trigger his interest if you would tell him to have a look at the documentation of the doings of another electrical engineer, stubborn like him (maybe more), many time zones away, almost his age, who had ralp 5 years ago and BCR 2.5 years later. Monthly reports in a thread entitled: "An engineer's Bicalutamide maneuvers".
Ok I will look this up
Ha! He does this kind of playing around when figuring out how electric cars are made, but not his health.
His health is his power grid. It has power plants (hormone producing organs), billions of small to large scale consumers (isolated cancerous cells to big tumors) and load shedding mechanisms (medical treatments).
Omg u sound just like him
I'm an RN, but background is trauma not oncology. When diagnosed my urologist said surgery, but then was told no because of lymph involvement, then was told radiation. By the time I had the appointment I had found this site, saw an oncologist and their treatment plan was actually the current treatment according to the studies I read. The urologist is not an oncologist and they may be very good, but almost certainly not current with today's standard of care.
I wish you and your husband the best of luck. Sometimes you can lead a horse to water but …
I am fairly confident that over the years of your marriage this is not the first time this has been an issue. Then again if you were not in with him during the consultations with the doctor then maybe the other evidence from the other tests can override the results of the decipher test.
I read his bio info you posted and it really lacks details and specifics so maybe the preponderance of evident supports what the urologist is proposing and your husband supports. Perhaps you are only being laser focused on that one report. Just saying.
Maybe you should attend the next consult when the decipher test is discussed in light of the other evidence. You may come away with a different point of view and have at least been exposed to it directly.
Please tell me what I’ve left out about my husband. And yes I go to all of his meetings.
zytega is brand name. So they do that one? Chemo - get with an oncologist! But personally, after surgery and radiation didn’t lower my hubbys PSA, we went to a cancer center (who did a scan and found bone Mets whereas urologist never mentioned a scan in 2016), we left the urologist totally after that
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