“We currently know of no way of curing metastatic PC.“ Not true in the world of academia and research. I realize some and others think my experience, as well as eight others with a complete response, is antidotal, however, I started as a guinea pig at Baylor College of Medicine in the Texas Medical Center in 2004.
From the Baylor College of Medicine website”
“Prostate cancer is extremely heterogeneous in its clinical behavior, ranging from indolent disease to aggressive, metastatic cancer with rapid mortality. While much has been learned in recent years about the molecular alterations associated with prostate carcinogenesis, a complete understanding of the pathogenesis of this common malignancy remains elusive. The optimal treatment for men with localized prostate cancer remains controversial while current treatments of metastatic prostate cancer are rarely curative.”
Two points that I pick up are: for localized prostate cancer, treatment is still controversial; 2. with regard for metastatic prostate cancer, treatment is RARELY curative. Note the absence of the word “NEVER”.
No doubt that EARLY detection of metastatic lesions are important; as well as, the synergy gained with multiple infusions and orals - all with the aim of cellular apoptosis from difference directions.
Which leads me into PSA testing and how the USPTF recommendations essentially screwed men. Recommendations from the Memorial Hermann Cancer Center affiliated with the McGovern Medical School - University of Texas Health Science Center website:
“The following men should seriously consider scheduling annual prostate-specific antigen (PSA) and digital rectal exams:
* Age 50 for men who are at average risk of prostate cancer and are expected to live at least 10 more years.
* Age 45 for men at high risk of developing prostate cancer. This includes African Americans and men who have a first-degree relative (father, brother, or son) diagnosed with prostate cancer at an early age (younger than age 65).
* Age 40 for men at even higher risk – typically those with more than one first-degree relative who had prostate cancer at an early age.
At present, there is no known foolproof method for preventing the occurrence of prostate cancer. The best course of action to lower your lifetime risk is through maintaining a healthy diet and exercise regimen as well as scheduling regular prostate cancer screenings with your doctor.”
I started PSA readings at 50 but when the PSA was going up he never did a DRE untill I had symptoms so I got screwed and it had spread. I am doing well on the treatments by a great oncologist who wants me to live many more years and is up to date on treatments.
Show me ANY treatment that has proven to be curative of metastatic PC. I'm sure there are cases of miraculous cures on the books- there are for every disease. But those are not the result of replicable therapies. Cures, I'm sorry to report, remain elusive for metastatic PC. Until there is a cure, the goal shifts to prolonging life and quality of life.
I think patients are better off putting their faith in science than shooting for miracles. Unfortunately, we can't choose to be a miraculously cured person, but we can choose which therapies to try.
Us PCa patients are all an experiment of one. Perhaps we can clone ourselves and participate in Control Arms of a clinical trial, yet - it's still an experiment of one!
So, what do we do, perhaps take risks with our lives, like stop ADT. Maybe add Chemo while PSA is undetectable during ADT2 treatment, seemed to be a good idea.
Are you prepared to pay out of pocket? I highly doubt any insurance would pay for this and remember SOC is as much a legal term as it is a medical term.
You will probably need to work with a researcher and sign away your rights...but I'm all for what people want to do...as long as it's done in a educated manner.
It was done, I'm still in the work force, my corporate sponsored insurance covered it all.
I'm on ADT2, meaning Lupron shot and daily Zytiga, now on vacation from this all. I have a great working relationship with my institutional Dana-Farber team...
Well, I guess I will have to be my own lab rat. We have to stick with SOC. It is keeping us going for now. Though, listening to the commercials, pharma is not even pretending to make us better-- " a chance to live a little longer". Someone needs to tell them this ain't living. I am doing chemo, docetaxel, but also the off-label drugs, and fenbendazole. The FBZ and O-L drugs are reported to enhance the effectiveness of the chemo and reduce the side effects. Seems to be working. PSA dropped from 69 to 9 in two months and the severe bone mets pain is gone. Is it Just the docetaxel? I don't know.
We know SOC is slow miserable death. We might as well experiment with off-label or off the wall if it has been proven to be safe.
Collectively we have vast and varied knowledge. It would be nice if we could pool that knowledge and possibly develop theories for treatment. Example: an article where Duke researchers had discovered the biology of androgen and cancer metabolism and how PCa adapts to bypass the androgen step, leading to CRPC. This glutamine metabolic pathway feeds the cancer without without androgen. Blocking this path should make ADT unnecessary. Johns Hopkins Has developed a drug which will safely do this. Will pharma see enough money in it to fund trials? Several of us did a search on blocking or suppressing glutamine metabolism in cancer. Together we found several research articles listing chemicals that would do that, Ursolic Acid, Trans-resveratrol and Turmeric extract. So I am going to see how my rat does on this. And yes I may need to drop Lupron to see. Can always pick it back up.
Friend a number of docs have reported a 25 per cent cure rate using multiple forms of ADP simultaneously. Go to you tube a number of great oncologist report their clinical experience. Metastatic cancer is tough!
The problem is, once the prostate cancer cells decide to stop binding to their neighbors and to start wandering around your body looking for a new home, there is no accepted measure of whether you are cured or not.
If you don't have an agreed and verifiable ruler to measure it, you can't prove or disprove it.
Even doctors in the same hospital can’t agree on this. The RO who designed my radiation program said its purpose was curative, even though I had lymph and bone Mets. His colleague, who oversaw the actual radiation treatments, was up front in her belief that I couldn’t be cured.
Well, my PSA has been undetectable for over 3 years, and I’ve been off ADT for two years. Am I cured? My wife likes to think so. I think if I say it, I’m poking the tiger, so I’m content to enjoy my long remission and stay vigilant and prepared.
PCa, and all other serious diseases for that matter, is further proof that the future is promised to no one. So live every day to the fullest, and don’t worry about labels like terminal, cure and remission.
I could not just read this and not respond to it. I am in total agreement. When I moved back to Texas, and started up with a new urologist, this urologist actually used the word “cure”. I am highly suspicious of that word, because even though I had one positive lymph node, there could be others throughout my body that are being suppressed by the Eligard. I have never had any scans done look for other areas where the cancer might be. It is difficult to believe that the pelvic radiation treatments could have irradiated and killed off any residual cancer left behind after the prostatectomy . Presently I am in a wait and see situation. One more year of Ella Garden before I come off of that and then we figure out out what. Presently I am in a wait and see situation. One more year of Eligard before I come off that and then we figure out what else needs to be done.
B8 keep up the good work. I’ll Pray that it works out for you. It took my MO to convince me to stop Eligard. He was right in 2010. Even right when he convinced me to use Androgel in very low doses..... I was most fortunate; even though I am a realist......
GD
Thanks Nal. I was most fortunate. And took notice that BCM changed their wording..... BTW, my cousin has metastatic breast cancer. I referred her to BCM..... and low and behold she is receiving the same treatment that I received in clinical trial. Dr A told me that the two cancers are related, closer than most understand...... anyway, I read everyone of your posts. Thank you and keep up your research.
Ductal hystoligy what i have is also a hystolgy of breast cancer....and another wierd thing...had genomic testing did not have brca..but had a factors come up for....colon....d breast cancer....intresting..i thought
I am thinking that since we all accumulate potential cancer cells (damaged cells) as we grow older, then we need to accept that we will have to live with them. So for me I am happy to think that there will always be some rogue cells in the system. I think therefore the focus should be on how to keep the cancer we have in us dormant. At present I am on Zoladex with a gradually sinking PSA value - so the ADT is actually killing cancer cells. When nadir is reached it seems logical that we should be able to find milder treatments which will keep the cancer dormant- and therefore be happy to live with the "no cure" cancer label.
Unfortunately, too many men discover that they are metastatic upon original diagnosis long after the tumor burden has grown. Shame on the U.S. Preventive Services Task Force. Supposedly an independent panel of experts in primary care and prevention who systematically reviews the evidence of effectiveness and develops recommendations. To date not one Medical Oncologist let alone an Urologist, and their recommendation is: "The U.S. Preventive Services Task Force (USPSTF) recommends against prostate-specific antigen (PSA)–based screening for prostate cancer." Yet this same group of people recommend cervical and breast cancer testing at age 40 for women!
From 2012:
“recommends against [PSA Screening]. The science shows that more men will be harmed by PSA screening than will benefit. The expected harms are greater than the small potential benefit.”
“The U.S. Preventive Services Task Force (Task Force) has issued a final recommendation on Screening for Prostate Cancer.
This recommendation is for adult men of all ages. It does not apply to men who have been diagnosed with or are being treated for prostate cancer.
The Task Force reviewed research studies on the prostate-specific antigen (PSA) screening test for prostate cancer. It concluded that the expected harms of PSA screening are greater than the potential benefit. This fact sheet explains the Task Force recommendation and what it might mean for you.”
“For men aged 55 to 69 years, the decision to undergo periodic prostate-specific antigen (PSA)-based screening for prostate cancer should be an individual one. Before deciding whether to be screened, men should have an opportunity to discuss the potential benefits and harms of screening with their clinician and to incorporate their values and preferences in the decision. Screening offers a small potential benefit of reducing the chance of death from prostate cancer in some men. However, many men will experience potential harms of screening, including false-positive results that require additional testing and possible prostate biopsy; overdiagnosis and overtreatment; and treatment complications, such as incontinence and erectile dysfunction. In determining whether this service is appropriate in individual cases, patients and clinicians should consider the balance of benefits and harms on the basis of family history, race/ethnicity, comorbid medical conditions, patient values about the benefits and harms of screening and treatment-specific outcomes, and other health needs. Clinicians should not screen men who do not express a preference for screening.”
“The USPSTF recommends against PSA-based screening for prostate cancer in men 70 years and older.”
I have zero problem with the advice that the primary care Doc should discuss the pros and cons of this screening......for there are cons, at least from the perspective of looking at all the statistics. Patients are not routinely offered angiograms, though for some it might be life-prolonging...nothing is life-saving. Angiograms also have negatives. The next debate might be.....why PSA test, all men should have periodic prostate MRI?? Much more accurate than PSA !! or PSMA PET ?
as someone else mentioned here, it is totally subjective/arbitrary where to set the PSA cutoff for further testing. The guy who "invented" the use of pSA opposes the concept of screening for evryone..doubt he is an idiot.
My 95 year old Mom has breast cancer along with my 71 year old sister both estrogen positive. I'm in the prostate cancer group, seems like there may be a connection.
If I might do a minor hijack of this thread, how do you avoid phytoestrogens? Are they not found in coffee, nuts, seeds, fruits and vegetables including garlic, celery, carrots, potatoes, rice, wheat, sweet potatoes, apples, pomegranates etc.?
USPSTF guidelines were slanted to not diagnose as much men with PC, both at the younger and the older ranges. This was justified by a backward looking logic. That in the past, with less effective therapies, men were mis-diagnosed at a certain rate and the previous primitive treatments were less effective and caused harms at a certain rate. The flaw was that it did not take into account improvements and new therapies being studied, proven and brought into practice. As we have seen in the revolution in PC management over the past 20 years. It has been anything but static of course. But must begin with screening and diagnosing more men at risk and getting them into appropriate and proven treatments with the knowledge needed to evaluate those choices.Those guidelines from the U of T are much better. 👍👍🙏
The effect of phytoestrogens on PCa looks to be a toss up. Mayo Clinic says there is some evidence that flaxseeds (#1 on the list of high phytoestrogens) help with lowering PSA:
I did some research on phytoestrogens and pca. There is one article that seems to support the effect that they can cause growth arrest and in some cases apoptosis in prostate cancer. pubmed.ncbi.nlm.nih.gov/126...
Like much in life there are two sides with support. That said we each are different and effects are too. Recently I started on Nubeqa due to rise in psa while on Eligard. MO now says I need my prostate removed. I had IGRT, 25 sessions and HDR Bracy boost 2 sessions. Had the genetic test but no results because no pca cells found in my blood.Pondering what to do then read your note. I love soy milk and now wonder.
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