I know this forum is primarily for those with advanced PCA, yet I regularly see posts by those who've only recently discovered the disease and are not in such adavanced stages, being treated only with 1st-generation ADT. Thus, as a nearly 20-year survivor of PCa (first discovered in 2005) and 10-year survivor of metastasis (yet still tumor-free), I'd like to recommend some books that have been very helpful to me in this sometimes awful journey.
1) "Surviving Prostate Cancer without Surgery," by Bradley Hennenfent, M.D;
2) "Invasion of the Prostate Snatchers: Revised and Updated Edition: An Essential Guide to Managing Prostate Cancer for Patients and Their Families," by by Mark Scholz M.D. and Ralph H. Blum; and
3) "Becoming Half Woman & Other Adventures with Prostate Cancer: Journal 1: The First 18 years," by Terry Coleman.
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bluesnjazz
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Our timing is similar (also diagnosed in 2005), my mets were confirmed only when I had a PSMA-PET scan two years ago. Luckily Pluvicto appears to be doing the job! I wish you continued success.
The side effects are better than chemo (still recovering from chemo side effects). Mainly fatigue, foggy head/thinking, dry mouth and a lack of appetite. How is the care in Japan?
Care in Japan is similar to that in the U.S., although medicines take longer to get approval here (anad insurance coverage) than in NA and Europe, I think. Costs, though, are a fraction of what they are in the U.S., plus copays are lower, it seems. For example, I see that a 1-month shot of Firmagon there is over $500, while here, it's about half that and my copay is only about $30US equivalent.
How does pluvicto compare with ADT? Can it be a substitute? I need to start my third round of treatment and I really can’t take the side effects of Lupron I make a terrible woman
No. If you have advanced PCa, you will more than likely be on ADT to lower your Testosterone levels since testosterone is the food for PCa. Other therapies are to fight hormone resistance and/or metastases. Pluvicto is a treatment for metastasized PCa. Hope this helps.
I disagree. Stories about those who survive a killer disease longterm while maintaining a decent lifestyle are never outdated. Be it 10, 20, even 30 years ago, whatever info those folks used to help them has to still be relevant. Of course, information is always updated by new studies and new empirical evidence, but that alone doe not negate the previous info.
I also often find that new info is somtimes only considered "better" simply because it's popular or pushed by folks who have influences on others.
In the context of this forum being about metastatic prostate cancer, otherwise known as advanced prostate cancer, your happy happy comments about 10 20 30 years with a killer disease are cruel and thoughtless.
The common confusion expressed as "you can live with prostate cancer but you won't die from prostate cancer" is a stupid cliche that applies only when prostate cancer has not metastasized. The failure to make this distinction is lazy and a source of confusion in journalism and at family events.
If one is fortunate enough to receive the most advanced new therapies for metastatic prostate cancer, the statistics are 33% survive to 5 years. New statistics are coming in that might push that to six or even 7 years. Think about it though: that means 2/3 don't make it to maybe halfway of your lowest number.
I trust the book reviewer who says the books are out of date.
Added Later: Inspired by NanoMRI below, and notwithstanding the above statistics, I'm sure many if not all of us here are working to live as long and as well as we can. Research and medications are improving! Let's keep up the fight against the Beast!
Good question Tommy. There is that other prostate cancer forum which seems to be for non-metastatic and they talk about things like watchful waiting. Since arriving here about 2 years ago my understanding has always been that this is where people are with are interested in metastasized prostate cancer hang out.
Of course all are welcome but in the real world out there the confusion between metastatic and non-metastatic prostate cancer - metastatic prostate cancer is in many senses almost a different disease - causes confusion and sometimes I think poor decision making.
I understand why you might perceive my comments as heartless for those who seem to have run out of options, but of course, I do not intend that at all. There are, however, apparently many others on this fourm who have discovered PCa recently and/or are not in advanced stages, and those are the members my post is directed toward. I am also metastic and have been for 10 years, discovering it 8 years after brachy that seemed successful.
Isn't disagreement part of unlocking the management and treatment of this disease? I concur with JohnInTheMiddle comments.
Bluesnjazz has not shared how these books have resulted in 20 and 10 year survival, for him, nor how he knows he is "tumor-free". He simply promoted them.
Although I have much less evidence of disease than most men in this forum, I am striving to do all I can to achieve 10, 20 and more years of not dying from this disease.
Perhaps bluesnjazz can specifically share what he has done rather than simply recommend books. Books that are indeed dated, and two of which are anti-surgery; note I am post RP and salvage extended pelvic lymph node dissection surgery.
There is no antagonism here or on this site. Blueznjazz is very lucky if he should not be on this site and would be best doing the honourable thing and remove his posts and refrain from posting unless or until he is unfortunate enough to become eligible. The cancer affects us all differently but there are many common situations, statistically tested and corroborated, that benefit us all here. We are well informed and work with Consultants who understand our specific status and whom we trust to do the best for us. Personal experiences from individuals with a full explanation of their grade and situation can be helpful. Individuals posting from a vested interest and promulgating poor often misleading information only makes it more difficult for us to filter down to useful information to help ourselves and each other.I am just undergoing my 6th palliative docetaxel cycle now at a reduced dosage to hopefully help with pain relief but not worse peripheral neuropathy. Probably my last cycle, as progression of cancer not good. But I am not giving up. I have succeeded with just over 3 manageable years now since first diagnosed. I might last to 5 years or even longer but statistically very unlikely. MSCC was unlikely but I still suffered it after 2 years from diagnosis. If I don't survive to 5 years then statistically someone else will manage more than 5 years so I have benefitted another person. If I last over 5 years then another person hasn't. For which I am very grateful to their early demise and I hope they did not suffer too much. That is how statistics work. If the median lengthens as science improves then we all benefit.
I wish you well with your journey but would politely ask all who should not be on this site to stop posting and if they find that difficult then to please leave this site so those of us unfortunate to be eligible can benefit each other.
Brandon your note is very powerful. And I had a revelation reading it because I also had Docetaxel at slightly reduced dosage, and an active engagement with palliative care, all after my diagnosis 2 years ago. It has turned out so far that I'm doing pretty well and the palliative care people admit that they don't know what to do with me right now.
In your case it seems more serious. And I noted you mentioned neuropathy. On this forum we have discussed of course the use of ice on hands and feet to minimize the development of neuropathy. Forgive me if this is insensitive to bring this up in case it will help.
Also you may very well be familiar with fasting around Docetaxel. The day before and the day of. The theory is that cancer cells become relatively more vulnerable to the chemo if one is in a fasting state.
I'm only 2 years in and you so far have had three decent years since diagnosis! This is incredibly inspiring - my initial therapies were what some people call a "Hail Mary Pass" (an American football term derived from Catholicism). It was time to get my affairs in order. And I was concerned to do that quickly because of the risk of debilitating decline.
Let's keep on fighting. And sharing knowledge. And welcoming the science and medical developments as they surface.
Thanks John. Yes the only way to be is positive and look for benefits from all treatments. Hot flushes have saved me loads in heating costs. Whenever my wife complained if it was cold I just let her know I was sweating and fortunately her temperature went up. So brilliant solution.I didn't think Hail Mary would solve my initial problem starting with PSA over 3000 and knowing nothing about PSA before that. However I did know my prayers would help me cope whatever arose so have found the journey a challenge and exciting if a bit concerning. I worked with my wife after diagnosis sorting out finances and doing my best to reassure her she would survive and manage reasonably comfortably. All she needs to do is stop shopping.
Take care and look forward on the bright side. I am still able to move around and stay out of bed so hopefully much more than only 2 months to go.
Brendan, G-d willing you should have many, many more than 2 months in the company of your family and your community, and even years and tears!
I read how your PSA was diagnosed originally as over 3000! I thought I was the prize winner at 1700! I've written about this separately but this stupid prejudice about not doing PSA testing has resulted in more and more men diagnosed with prostate cancer where the cancer is already metastasized.
In my case it took 6 months to figure out my backache. (Lesions to ribs and three seriously compromised vertebrae. My bags were packed to go in for some kind of treatment and then they called and said "don't come in". So I avoided surgery and radiation and it's been chemo, ADT and ARPI since then.)
On the question of hot flashes I never have them and I am on the androgen antagonist GnRH Firmagon. Maybe that has made a difference.
OK I just read your full bio now. I'm not going to change what I wrote above but I will be more humble.
You are diagnosed only a year earlier than me. And it's odd I've only learned recently, and that includes your note, about PCa palliative care related chemo.
Okay, running out of things to say. I've been dilly-dallying in my affairs are not in order.
A big success for your current treatments in terms of your clarity of mind and your ability to get around and do things. And the uninvited visitor should just go to sleep for a while.
As Americans used to say a long time ago "Keep on truckin!". I think your version is "Keep Calm and Carry On".
Bravo Max! Outstanding comment. It's interesting I reviewed these numbers about a month ago and the same numbers that show up and which I quoted above, my understanding is that they do not yet reflect the prognosis for populations treated according to the newest treatment protocols.
Should not be on the site? I'm matastasized and have been for 10 years so have the same right to be here as you! Are you suggesting that one must have mets throughout the body to be here?
It's also a littel insulting to me to suggest that I have some vested interest in recommending things that have helped be and especially to have posted nomisleading info. My post was purely an attempt to help those who have recently discovered PCa and/or are trying to decide what to do about it. If a recommendation is not for you, why not just skip over it instead of raising invalid questions about the poster?
Disagree, and I will soon post something very short addressing a question the other day.....will be relevant to those anxious about the outcome of RT treatment. No one here has any gun to the head forcing a reader to read more than a few words of a post......skip away from things that displease you...is that hard to do??? I doubt there are more than a few rare exceptions to the rule that men post here in the hope that some reader(s) might benefit, or at least be interested!!
My intent is to not be antagonistic - but rather, to unlock the whole story. As I wrote, bluyesnjazz posted the same (book promotion?) on another site. He did reply to me on that forum and this is my latest reply to him - I hope this is a helpful dialog. Copy and paste of my reply on the other forum:
I appreciate your reply - without writing a book you have shared a lot. How wonderful your treatment choice of ADT has kept your disease under control for the past 8+ years. Although your treatment choice is not mine, I will not denigrate your treatment selection as you are mine.
Clearly, you are proactively anti-surgery. Unbelievably to me, you state you are “very sorry” that I “allowed them to do it (surgery) to” me. I am VERY grateful I freely chose RP and then salvage extended pelvic lymph node surgery with frozen section pathology procedure. For you see, my focus has been and continues to be, if it comes to it, to defer long-term ADT and thereby the risk for CR for as many years as possible.
You also share you are relying on multiple scans every year to know you have no detectible tumors. We all know imaging and radiologists can miss smaller tumors. After my unsuccessful salvage RT, I traveled to Netherlands for imaging, the Ferrotran nanoparticle MRI trial. At usPSA 0.11 that imaging identified five suspicious pelvic nodes while the Ga68 PSMA was ‘clear’. Based on the findings of the nanoMRI I declined the STAMPEDE trial protocol and chose ePLND.
Today, over six years later, no ADT, my usPSA remains very low stable 0.03X range, with clear annual imaging and clear blood biopsy testing. BTW, none of the side effects you speak so loudly of.
I very much appreciate your comments and your choice of RP which I also did. I am wondering if you know anything more about the availability of the nanoMRI you had and if there are any in North America. I see my numbers rising and I want to become informed but it’s hard to research this MRI business in Canada because I simply don’t know enough. I think you have taken excellent moves in your diagnostic decisions.
Thanks! I will respond more completely later - but the short answer is the nanoMRI is currently not available; it could be (late) next year, in Europe.
Several weeks ago I had an extensive video conference with the CEO of SPLmedical, the 'owner' of the Ferrtran nanoMRI. Essentially, the European trials are complete and they are working through the approvals and deployment processes. So it seems mid to late 2025 for Europe. Sadly, there is no idea as to if/when it will be available in the US.
Having been pursing imaging here in the US since 2015, I do not think we are really that far ahead of Canada.
As I share, I began imaging after my post extended pelvic lymph node surgery usPSA rose from <0.010 to 0.03X. Yes, this is well ahead of common guidelines and some members in this group speak loudly against usPSA testing and imaging at these low PSA levels, but I know these investigative methods provide critical information to stay ahead of this beast and to not give it time and obscurity.
Since the nanoMRI is not available I have learned to do imaging with PSMA PET combined with multiparametric MRI, and to get second radiology opinions. In my upcoming annual imaging I will be getting either a fluciclovine or Choline PET for comparison. Despite the naysayers in this forum and the general medical complex, this is my life and I am striving to delay long-term ADT/chemo and thereby possible/likely CR for as long as possible.
Thank you Nano. I appreciate your information. I will try to advocate for this kind of response with my uro. Canada is shackled by Medicare for the most part. Bureaucrats set protocols. I’ve heard Quebec has some private and might look into that. But I’m not a rich man and insurers don’t pay private. It seems to me that you have the right attitude. And have taken good strong action at low PSA.
We face constraints and limits here in the US as well, even with private insurance. For example, it is not always easy to get insurances, private or our Medicare, to pay for imaging, especially multiple types for comparisons.
Thanks! Me either. It's just a simple recommendation made only with the intent to help anyone it can, so why the hostility? If someone doesn't like what others recommend, why not just ignore it?
What is HealthUnlocked if it is not a forum that includes discussion and sometimes disagreement?
I will again say I think it is a shame the guideline to speak from one's own experiences was removed.
So, it is okay to speak against surgery, a procedure you have not had, and thereby disparage those of us who freely and willingly chose this treatment method; but how dare us comment back?
Given that I've been metastic for 10 years and doing IADT for 8+ of that, it seems silly to wonder how I know I'm tumor-free; it's the same way you know if you DO have tumors. So maybe I should have said I "appear" to be tumor-free because those of a certain size are not yet detectible? Are we nitpicking about sematics?
Whatever info these folks used to help them 30 years ago ‘has to still be relevant’ is nonsense. Far too much has changed in 30 years for that to have any chance of being correct.
It is not nonsense. Despite lots of improvements in treatments (most of which come with their own sets of awful side effects), the basics of complementary treatments with diet and supplements are much the same. Plus, despite those improved treatments, urologists worldwide are still pushing RP as a "gold standard," which is a total lie, given that about a third of those guys will still develop metastasis.
I am not hostile, and I will do my best to avoid becomming so, but my intelligence and integrity being challenged by several members of this forum are making that difficult.
What do you mean, have I experienced metastasis? That is simply C-cells spreading to other parts of the body from where they originated, and I discovered that 10 years ago when my PSA climbed sharply yet a biopsy of the gland showed no sign of cancer. And since sans showed no signs of tumors anywhere, it was described as micrometastasis. Why I do I need to keep repeating my own info? Let's just stop this these senseless exchanges and just agree to disagree.
Well, have you not judged my intelligence for selecting surgery, twice? I share why I chose these treatment methods and my outcomes.
What I mean is that you share you choose a non-surgical primary treatment method and then years of ADT. I very carefully considered your treatment path but choose differently. Again, I do not judge nor criticize you choices.
You write about the ills of surgery. I have no unmanageable side effects. I can manage my lack of ejaculate, my slightly smaller penis (it was never huge ;). Nearly nine years post surgery my continence remains excellent. My erections did recover naturally - although I do wish I had done full penile rebab including pump and injections.
My single year on ADT shrunk my testicles, took a big bite out of my libido, stole my energy, and enlarged my breasts.
No I cannot simply agree to disagree with someone who judges and criticizes my choices and then wants to call game over.
One more comment - I am quite certain MOs, ROs and the docs that dispense ADT indeed get paid for their treatment deliveries.
Justfor_ you really want to unlock this particular box of Pandora's? After my successful ePLND with frozen section pathology procedure, done in Belgium, my US medical team again recommended STAMPEDE. After accepting my firm no they pushed just Lupron. After much reading including 'studies' and trials, and consultations abroad, I compromised with bicalutamide. Upon learning the cost of Lupron I did ask if this was a component of their recommendation. With reluctance, they acknowledged.
This really unlocked the beginning of my understanding of value/volume based healthcare and economic incentives for docs/medical groups.
As my health was otherwise most excellent and stable the cost of my year on bicalutamide was out of pocket because the total cost was well below my annual private insurance deductible and co-pay. (The cost to drive my truck from my campsite to the pharmacy cost more than a months supply).
I had RP. Anecdotally a few people who I know who had RP had zero recurrence over decades. Zero. I have known people with implants and other treatments who have had recurrence. I know there are examples of each and data that supports each. This forum should not be a place to disparage others’ treatment options. Doing so only demonstrates our own discouragement with our own situations. We don’t paint things all rosy but we need to respect choices. Every case is very unique.
Even more nonsense. Of course urologists are pushing RP, that's what they are trained in. No decent MO believes the RP 'gold standard' stuff anymore, and comparing such a antiquated maxim with today's treatments is apples and oranges.
Urologic surgeons want to earn a living, and to believe in what they are doing. RP may soon be obsolete, but is still an effective treatment in certain conditions. It previously was the gold standard before major improvements in radiation.
This is why the 'diet and supplement' treatments 'those folks' used to help them 30 years ago are are not only not 'much the same' as modern oncology, they are still snake oil. In fact more so.
Do many urologic surgeons wrongly push for surgery where it will likely fail? Of course. That's why it's the patient's responsibility to do his homework and get a nomogram, a PSMA pet scan and lose the urologist, replacing him with a reputable oncologist who specializes in prostate cancer, preferably at a center of excellence. Trusting 'urologists worldwide' with one's Pca care is a fool's errand.
Until new treatments with fewer, milder, or no side effects arrive, we have what we have. The 'sets of awful side effects' of these can usually be minimized very effectively with sufficient exercise. The unfortunate truth is that most men starting treatment are not in sufficient good health to avoid significant consequences from it. Too often they don't realize what must be done to deal with the side effects these drugs induce, or are unable or unwilling to intervene on their own behalf.
No matter how much the medicine advances, patients cannot maximize their benefit from it unless they learn about this complex disease and make intelligent decisions. Eschewing modern medicine for diet and supplements is tired and has been proven time and again to hasten the death of gullible patients looking for easy alternatives.
So urologists don't believe it's the gold standard anymore? Check this out: ncbi.nlm.nih.gov/pmc/articl... "radical prostatectomy remains the gold standard for surgical management" Or is 2017 already outdated info to you?
And please stop calling what I say "nonsense." That's an insult to my character and intelligence.
Take it easy. You're reading too much into it. I wish you well as everyone.
The only things I took exception to was your urologist complaint and reference to diet and supplements, but I may have misunderstood you on the latter.
As for the former, no doubt urologic surgeons are inadvertently doing harm, often. But the reason we need to be encouraging patients to leave them behind has much more to do with them being out of their depth with regards to overall treatment, not RP itself. RP is a challenging surgery to do well, and in select men it is preferred.
I think it is very important for newly diagnosed to join this advanced group regardless of the severity of their diagnosis. That is because all of us here are extremely knowledgeable about the beginning treatment options. It is crucial for treatment naive warriors to know the future steps and consequences.
2) While I have High Risk PCa that has not yet metastasized further, I find the posts here extraordinarily helpful: they provide a potential roadmap if things go south; and give much needed hope for facing potential issues with my treatments.
I read Dr Scholz' book. I believe that he has been instrumental in influencing men to avoid the extremely invasive option of prostatectomy and the often regrettable quality of life penalties that go with that. How is this book, along with the other two, "dated, lacking and very wrong on multiple points" ?
Exactly. Urologists wowrldwide are still pushing RP as the "gold standard" of PCA treatment, which is the big lie. The only "gold" in it is the outrageaous surgery fees they gain. Those who get that and suffer all the pain, lengthy recovery, ruined sex life, and inability to pee right again still have around a 30% chance of metastasis. I in no way intend this to insult those who've had RP, but it is fact.
People do get touchy about their chosen treatment option but yes, urologists for the most part make a living performing these surgeries. All we can do in this forum is try to point out the realities of the choices patients are faced with.
Totally agree, and I can easily understand people being defensive about their choices of treatment if those didn't turn out so good. This forum, though, seems to have quite a few of those who become unpleasant about it all, which makes me think I won't make any more posts.
I wish we had a modern book with all the amazing new drugs and knowledge of exactly how prostate cancer progresses, but i think the reason we don’t is the changes in treatment and knowledge are happening fast and we all get more up to date info on pubmed.
I wonder if AI could write a book with all the latest and greatest knowledge?
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