Hello everyone
Just starting this journey and I must say , its overwhelming
all the information to try to remember , wether im making the right treatment choice or not
financial future , emotional stress .
Has anyone tried alternative medicines ?
Recently diagnosed: Hello everyone... - Advanced Prostate...
Recently diagnosed
Written by
BillyVolt
To view profiles and participate in discussions please or .
57 Replies
•
I was a little older than you when I was diagnosed. Nothing but treatments from my MO. Nothing alternative here. Been going strong for 7 years and 2 months
You have science with proven clinical studies showing treatments which will prolong your life .
Then you have alternatives medicines without any proof that any of the proposed treatments will prolong your life.
I believe the decision is a simple one.
I agree 100%; this is a serious matter not like others like wanting to diet etc.
The Beginning Of A Metastatic Prostate Cancer Journey - Part 1 of 2
Hi Billy! I'm in my later 60s but we still have a teen at home. When I read your note I could only imagine what you are going through.
I'm also in Canada so insurance is probably a lot easier to work with. My diagnosis was 18 months ago as Stage IV high-volume prostate cancer, metastasized esp. to my spine. Three or four severely compromised vertebrae (all discovered via a backache!).
I've learned a lot over the last 18 months, as well as dealing with the emotional shock & devastation to my wife.
So far I've had no surgery or radiation but my PSA is now zero and I have no disabilities. Aside from fatigue and inconvenience periodically for injections, and acknowledging that my life is probably foreshortened, life goes on. One thing I did learn through all this: "PCa" is crazy complicated. (Not everybody embraces that.)
Here are some thoughts about things I've learned along the way. Forgive me if readers are already familiar with the material!
1) READ - If you're the type of person that likes to study, start reading.
2) COMPLICATED - Prostate cancer is a very complicated process. There are no silver bullets.
3) DIFFERENT - the world of metastasized prostate cancer is very very different from the world of people with "just prostate cancer", where the cancer is still only found in the prostate. But because there are many more of the latter than the former, much of what you read will be about non-metastasized prostate cancer. I didn't realize that in beginning. One can waste a lot of time learning about things that are irrelevant for someone with metastatic prostate cancer. Also you will meet a lot of friends who say things like "oh my uncle lived for 20 years with prostate cancer". And you explain about metastasis. They will forget. They will not appreciate what you might be going through. Don't forget, this is the "Advanced Prostate Cancer" Forum.
4) THIS FORUM RESOURCE - there are people on this forum where it's worth reading all their older posts.
5) UNEVEN STANDARDS - it seems clear that standards of care for metastatic prostate cancer are very uneven across North America - there's even a well-known medical oncologist that laments that the dispersion of the latest therapies is taking too long. This might affect you - if you have a physician that is a little out-of-date versus a physician that is right up-to-date! How will you know?
6) THE MOST IMPORTANT SPECIALIST - learning about the different medical care specialties relevant for prostate cancer care is very important. In particular you must have a medical oncologist. Because of the nature of prostate cancer and where you can get the biggest leverage from therapy.
7) NATURAL CURES - every now and then we learn about somebody who lost a lot of time and rejected science and medicine in favor of herbal treatments or natural treatments or something. Well there may be some value in these things in addition to standard of care, but time is of the essence and it would be a mistake to delay engaging with medicine.
8) POWERFUL NEW THERAPIES - look up "triplet therapy". Some practitioners will not suggest it to you. Triplet therapy (of one kind or another) means you add everything together to hammer the cancer - the chemo, the "ADT" injection, and another class of "ARPI" drug or something else. You would need to be covered by insurance for this. But also "doublet" therapy (two of the above) is an important consideration too.
9) SUGGESTIONS ONLY - these notes are all generic suggestions and not intended to be a recommendation of any kind specific to you.
10) YOUR OWN STYLE - a big question is whether you want to be involved in decision-making. You can just go with the recommendations of your physicians. Lots of people do. But consider becoming more informed - then you may be better able to decide if you have good doctors. And, when presented with a choice, you'll be more informed about the implications. The world of metastatic prostate cancer therapy is quite complex and doctors are making choices all the time.
11) EXERCISE - one of your other respondents mentioned exercise. This is non-trivial - it's very important. But like everything you have to understand timing and doing it correctly. I have cancer-driven severe spinal fracture risk and so there are exercises I can't do. I was shocked at how quickly one doctor explained to me that I had already started physical "deconditioning". It's hard to exercise but it's more important than I knew. And lurking in the background of course is sarcopenia, or loss of muscle mass. Exercise!
12) SIDE EFFECTS - some people have lots of debilitating side effects from prostate cancer therapy and some have fewer side effects.
13) "WHATEVER" - some things I don't worry about: "ED". I'd rather live longer. (Probably easier to say at my age 🙄)
14) THE INITIAL ROLLER COASTER - as it was explained to me, the objective when I first showed up was to stabilize the situation and tackle the immediate pain and risk to my spinal cord. The ADT drug plus a strong steroid started to work almost immediately. This was supervised by an oncologist. I was given hydromorphone for pain. After not too long a period of time my PSA went down and my pain subsided and I could walk in a straight line again and life kind of sort of return to normalish. End of the short "phase 1". (~ 8 weeks for me, inc. all sorts of tests.) Then add additional therapies like chemo etc. I call that "phase 2". (This was ~ 8 months for me.) Now you have your long-term therapy plan and you monitor things. I call this "phase 3" and we hope it goes on a long time. (Your therapy may be different order.)
15) UNDERSTAND THE DIFFERENCE - some locales have a greater or a lesser emphasis on palliative care and quality of life. There may be also other kinds of care that are oriented towards improving health, such as an exercise program. These two philosophies are different. I'm not ready to get my affairs in order yet!
18) LOTS OF WORK - all this cancer management takes a lot of time, even aside from questions of side effects, fatigue & disabilities.
19) TESTS & UNCERTAINTY - there will be lots of them. If you have to travel, they take time. People on forums spend a lot of time discussing tests. Tests support decisions. But there's a lot of uncertainty in test data, the selection of tests that are done, and the decisions that are made on the basis of data and judgment. Sometimes people are surprised: everything is not cut and dried. There's also the cost factor - some tests are very expensive.
20) CLINICAL TRIALS - sometimes it's worth learning about various clinical trials which become the justifications for your doctors' recommendations. One well-known is STAMPEDE.
21) INCONTINENCE & UROLOGY - a key aspect of quality of life! But my focus here is on medical oncology - with a focus on life expectancy, not specific organ functional problems problems.
SEE PART 2
The Beginning Of A Metastatic Prostate Cancer Journey - Part 2 of 2
22) A BIG QUESTION - at the start of your PCa journey, being overwhelmed is normal. So what could be a guideline for thinking about your situation? For me the answer is "is what I'm doing helping in any way to put off the development of castration resistance". (We could think of this as "phase 4" in the metastatic prostate cancer journey.) There are lots of things that oncologists will try after the development of castration resistance. But we like to put that development off as long as possible.
23) WHAT COMES LATER? These notes don't cover what comes later. That would be after the failure of testosterone suppression, and after further rounds of different and even exotic drugs and therapies. There are multiple ways this might happen. Hopefully resistance is pushed off by today's powerful therapies.
24) SOME TERMS TO LEARN - here are some basic terms to learn at the beginning. There are more as you go along! 😂
"ADT Therapy" - in several varieties, this is the original backbone of prostate cancer therapy, going back to the middle of the last century. ADT suppresses testosterone. If you are metastatic, you will probably be on ADT forever. There may be debilitating side effects arising from the suppression of testosterone. Eventually, ADT will fail - at least in the world of metastatic prostate cancer.
"Testosterone" - is the hormone that drives your prostate cells, cancerous or not - and a lot of other important body processes such as strength and muscle mass. We're going to turn testosterone off! And then the prostate cancer cells will go to sleep and maybe some of them will die. (BTW, testosterone does not "feed" prostate cancer - a very common description of what big T does. Cancer cells devour energy like every other cell in the body - testosterone is instead a "signaling molecule" that tells the prostate cancer cells to rev up & do their job. Prostate cancer cells on their own, anywhere in the body, are just sitting there waiting, almost doing nothing except waving their little androgen receptors and screaming "turn me on", over and over again.) The suppression of testosterone has a huge impact on the body. Not surprisingly including ED. Without testosterone the whole body is thrown out of whack!. There are lots of unpleasant knock-on effects. As you get further into your journey you will be thinking about things like osteoporosis, the risk of bone fracture, sarcopenia and cardiovascular disease, driven by both your therapies and the cancer itself. There are simple things that may be of help, especially as mentioned, exercise.
"Castration" - horrible term - but when we reduce the testosterone this is the effect. When testosterone can be reduced by ADT then we say that the prostate cancer is "castration sensitive" or "hormone sensitive". We want to be sensitive as long as possible. As your doctor will perhaps already have explained to you, after a while the cancer figures out a way to thrive without depending upon testosterone. Once prostate cancer escapes the world of testosterone suppression then that is called castration or hormone "resistance". This is why the medical oncologist is so important - because surgery and radiation can only do so much. Prostate cancer never goes away but as long as testosterone is suppressed then it will be kind of asleep and not metastasizing. It's a biological problem more than a mechanical problem.
"Prostate Cancer Cells" - should be limited obviously to residing in the prostate, but somehow they got enthusiastic to go on a holiday. And then they go to places like lymph nodes or the bones of the hips and spine! And establish themselves. There are likely "billions" of them! And they are very enthusiastic to do their job. They now see their job as to grow! Yay Team! And the other thing they do of course is produce PSA.
"PSA" - this is what prostate cancer cells produce as part of their support of the reproductive process. Perhaps most of the escaped cancerous prostate cells still consider this an important job. That's why we can use PSA as evidence of prostate cancer cellular activity. Note that PSA is only an indirect measure of the activity of prostate cancer cells. Nevertheless everybody gets excited about PSA going up and down. And it when it starts to go up then we were worried that the prostate cancer cells in different parts of our body are starting to become active again. Remember, PSA is not the cancer itself and it is not a perfect measure.
"Other Therapies" - Testosterone-suppressing ADT is the backbone of prostate cancer therapy, as was mentioned above. Most people in North America today will also be offered additional therapies, depending on circumstances. Radiation and surgery are very important. They work by killing or cutting out a limited number of detectable growths or lesions. But PCa is a system-wide situation and needs system-wide therapies. Sometimes, as in my case, radiation and surgery would not have been helpful. So system-wide is the way to go. Chemo is one of the first things that people think of. Of particular importance are the several varieties of powerful drugs related to the body's hormone, and other systems. These drugs will hopefully find cancer cells everywhere, including at tiny sites that don't show up yet on scans. Selecting which drug therapies, and in what order and combination appropriate for you, is a major part of your engagement with the medical system.
-------------------------------------------
So maybe these suggestions for thinking about PCa and some terminology might be helpful, or not. All these topics and more are covered in many fantastic posts here in MaleCare on HealthUnlocked. This evening, I just started writing a few comments .. and then kept going .. 😀 I'm happy to make any adjustments if anyone catches an error or a misplaced emphasis etc.
Strength, Billy, from the folks here. We look forward to engaging in with you in the future and with whatever contributions and insights you're able to share. For 10 or 20 years or more!
Mr. Middle
P. S. - I'm commenting after reading some of the later replies. From what little I know of your circumstances this comment may be relevant. I have had no surgery or radiation. As a result I do not yet have any of the horrible disabilities that so many people have, especially after prostatectomy.
Why no radiation or surgery? This choice was made for me by smart doctors - the reason was because for me it was too late. Because the metastasis had gone too far! The destruction of my body and quality of life, by radiation or surgery, would not extend my life span! (I'm grateful for my doctor's choices - at the time I didn't understand their reasoning.)
My focus now is on system-wide medical oncological interventions, i.e drugs (and things I can do like a low-carb diet and exercise etc.) Beware unnecessary therapies - and the perverse incentives for "the unnecessary".
Fantastic post . Love to see this level of help. This is a great read to start yourself off. Even after a year of research and reading through these forums .. I found this useful .
Thanks brotha !
Wow, what a fantastic response to his post! You can tell you have read and learned a lot about your condition! You have a great way of disseminating the knowledge.
Thank you JinMThank you for the extreme effort you must have used to encapsulate the knowledge you have displayed
I have prostate cancer-it was officially diagnosed in 2011. Received Brachytherapy and all was well when last year 2022 after a rise in PSA & after a petscan a small "prostate" tumour was found on an adjacent lymph node. I was assured!!!! that a focussed radio beam therapy over 5 days would zap the tumour. Ins cost £30k!!!! After reading your thesis ! I am not so sure but hey ho I am in good health, play tennis etc and I have lived for 77 years(UK). Ed now a fond memory
Absolutely fantastic run-down. We're in "Phase Three" now as well. This post should be required reading for all newly diagnosed mPCa patients!
Amazing post and it really summarizes what a new person needs to know. I wish there was a way to keep this post readily available to new people. Thanks so much for taking the time to do this.
Right? It should be made into a file for future and continued access
Thank you John for your well thought out replies. I would like to ask you to make them into your own post so that we can save your valuable comments and insights.
Carlos - thanks sounds like a good idea. I'm still trying to figure out how to make the best use of this HealthUnlocked forum.Also FYI have made quite a few changes and additions since last night.
Also I'm trying to figure out what it is the question I'm answering - some of the comments have helped me with that. It's "things I wish I knew when I first got my diagnosis of metastatic prostate cancer." And it crosses the domains of illness and engaging successfully with the medical system and filtering out noise and highlighting what could really make a difference.
I think I have been lucky, mostly, my impression is that lots of men start their metastatic prostate cancer journey on the wrong foot. I don't know if you agree with this.
For example I go to major prostate cancer websites to see what their homepage says. And aside from often being boring, these apparently top resources are missing a lot of the topics I covered today. There's a lot about feelings and relationships and stuff.
I agree. I didn't find this site until after my initial treatment plan had been laid out. I had read and searched the internet, but God how I wish I had a better primer. With the depth of content you included, maybe a series of shorter posts on each of the primary categories you laid out above. Within each post you could embed a hyperlink to the previous post.
As was discussed in another post this week, the search engine on HU doesn't function efficiently. But, I know I would save your posts so I could refer to them and share them to other newbies. I'm confident that others would do the same.
Thanks again, Ron
Thank you JohnInTheMiddle and everyone else that responded .
amazing all the information and support . I will continue to read and hopefullly make the best decisions possible along the way .
John , your post should be considered a theraputic paper. It mirrors my journey so far and as such anyone reading it can consider the post proof read 
Thank you , i found it supportive to know i am not alone.
Thanks '61.
that is a great help to many men I'm sure!!!!!
Great summary! I love when someone says, "You'll die with prostate cancer, not of it."
I would like some way to copy and keep this post which is do helpful to all of us. Can it be saved or copied somehow?
Echoll. I don't know what software you have or your computer expertise, but the simple way I save info like this on my Windows PC -- and you could do the same thing on your phone -- is to highlight the information you want to copy; then do whatever your "copy" command is to copy it to your clipboard (It is Ctrl-C in Windows). Then open your word processor; open a new file, and "paste" the info into the file (Ctrl-V in Windows). Then give the file a name and save it. Good luck.
It is so hard to be newly diagnosed, and when i hear from a guy starting the journey i could start to cry. The post from Johninthemiddle is clear, and i hope you will understand deep in your soul what you have to do and what you want to do with the help you need.
Hi BillyVolt. Yeah, it’s a crappy situation to be in, sorry you joined our club. Please find comfort in the fact there are many fantastic treatments available to enable many more years to enjoy life. You’ll find many people here are, or have been, in a similar situation and are very happy to help - like the post above from JohnInTheMiddle.
I was 52 in April 2022, when diagnosed with stage four pc, Gleason 9 with mets to 3 bone sites. It’s a terrible shock to you personally but also your loved ones. So sorry for you. That said, whilst our disease is clinically incurable, the current treatments and emerging innovations give us time and hope. Hang in there. Take care.
You got great advice here. My husband was diagnosed much like you- you can click my profile to see his diagnosis and treatments. He was 49 at diagnosis with mets to bones. Our 3 kids were 14, 16, and 18. It’s been 6 years now and he's doing well. He did change his diet and start weight lifting- to support what conventional treatments his MO gave him. He's still working- gets fatigued more but he is still very active and last scans showed metastasis were not active. PSA has taken all 6 years to get below 1 but continues to hover there and drop bits at a time. Just wanted to send understanding and encouragement. We would have done triplet therapy if he was diagnosed now. We are sure to keep our communication flowing- it has helped us weather the ED and other issues. Our marriage was already strong but has gotten stronger. We have been open with the kids- we let them ask questions💙
No but you should be open to anything that works. Maybe it's overwhelming, maybe it's not but you don't have to figure out your entire future at one time. Start on a standard treatment and consider supplementing it with other things (whatever those are).
IMHO, hoping for a home run with some crackpot cure is a fast track to death. Stay in the main lane; a lot of very smart people are working on treatments and cures for prostate cancer.
listen to Tall Allen. Also (and I know it’s tough), keep your details straight.
Mostly, Good Luck!
Tall_Allen is great!
For someone who leads with stating he is overwhelmed with information we certainly are giving him a lot of it.
It’s all good to know, and the efforts are hopefully appreciated. But what many men need most is a good Pca oncologist specialist, particularly at a center of excellence if possible. Too many are under the care of urologists or general oncologists, which is inferior.
Beware the internet! The deeper the dive, the more conflicting information, confirmation bias, folklore and idle opinion. Especially with ‘alternative’ treatments.
That said, I’ll of course add my opinion: Get the Pca specific oncologist, learn about your disease but don’t obsess over it, count your blessings, eat well and healthfully.
Most of all, get plenty of daily cardiovascular and weight bearing exercise. It is indispensable, and more beneficial than all other alternatives combined.
Very good advice!
I've done many alternatives things ("medicine" might be debatable), but I've also been on regular treatment for five years. Easy to do both, determining what works short term and longer is challenging.
Hey Billy you have found a great group. Please don’t be afraid to ask any questions you have. It does get better as you develop a plan. Alternative treatments can be adjuncts and complementary to standard of care, but I wouldn’t suggest using them as stand alone treatment.
I've had success with lycopenes, heat, and magnets. Read my bio.
Welcome to the group none of us wanted to be in. I started my journey at 51. Finally diagnosed at 52 Gleason 9 which had spread to my lymph nodes and right hip.
On the advice of TallAllen I got second opinions and pushed my Oncologist to start me on triplet therapy with chemo and darolutamide. I also had radiation this past winter. My last two PSA results have been <0.1.
Exercise has been key to helping me through this with relatively few side effects.
Happy to share my experiences and chat if you need it.
Hang in there! This is a great group and source of support.
Fantastic note Alvin! And scary to think that an oncologist would not automatically suggest the best therapy! Proven in the highest quality clinical trials. And with a very significant benefit in terms of life expectancy. (And a note to any readers regarding the insights of Tall_Allen.)
Here are links to two documents that you will need on your journey. First, you need the abbreviations that are used by everyone; and then, the second doc will help with understanding your test results.
Keep in mind, every drug or treatment seems to have 3 names and abbreviations. First, your world is turned upside down with this disease; and then, they try to drive you crazy with words you can’t pronounce and test results that are incomprehensible.
I keep a hard copy of the abbreviations next to my computer and reference them constantly.
healthunlocked.com/advanced...
ro.co/health-guide/prostate...
Best to you and your family
I note some terms related to newer therapies are not included yet, such as "triplet", "doublet", "ARAT" or "ARPI", "neuroendocrine", etc. 😃
Good catch! The “moderation team” maintains the list. Here is their contact info: healthunlocked.com/advanced...
Hi Billy,
No knowledge of afternative medicines. Just wanted you to welcome you to the group and say that it was helpful to me. Paricularly the live sessions here in New York. This was before Zoom. Don't know what''s available now.
Good luck,
Fairway
Billy you are young and if you play your cards right you can walk away from this disease in pretty good shape...the big challenge will be to do your homework, ask the right questions, find the right doctors and get the correct treatment on time...also, watch out for your sexual health; NO ONE will be doing this (unless you are very fortunate)...there is a lot more on my site you can plow thru but here is the first part of the firehose that you can sip on for now...Rick
healthunlocked.com/active-s...
healthunlocked.com/active-s...
healthunlocked.com/active-s...
...understand what ADT will do to you...it can extend life, prolong regression and be a great tool for some treatments but understand what you are signing up for, especially at your age...no one told me any of this before I went on 21 months of ADT...
healthunlocked.com/active-s...
In my original post I commented on the enormous difference between having prostate cancer limited to the prostate gland, and having metastatic prostate cancer. Once you have metastatic prostate cancer, you will probably be on ADT forever.
Our esteemed colleague to whom I am replying here mostly posts on the "Active Surveillance" forum here. I may be incorrect but this suggests that metastasis, fortunately, is not involved.
ADT side effects are challenging but what I have read suggests we in the metastatic category have no choice. So we make the best of it.
Sexual health is the same regardless. Just understand what ADT will do. If u already know great. And yes, u r in for long term ADT use so the effects are guaranteed. I never worried about any of the side effects during my treatment , just focused on staying alive. Then it dawned on me that I might survive this beast. At that time though damage was done n there was no backing up. That was the basis of my effort. Good luck with ur treatment.
PS there is no breakdown on forums and posts that I know of. They all get lumped together.
Regarding "PS there is no breakdown on forums and posts that I know of. They all get lumped together" ... This is not correct, to my understanding. Our "Advanced Prostate Cancer" forum could be considered the "Metastatic Prostate Cancer" forum.
There are differences, and this was an issue that I highlighted in my two big "prostate cancer overview" posts. Confusing non metastasized prostate cancer with metastasized prostate cancer is a source of confusion. And as I pointed out this confusion has bad consequences.
Good luck to us all 😀
Ok. This is the second time that I’ve been told this by the advance group. I don’t mean to speak from a different level regarding treatments or outcomes or expectations. I will take this to our monitor because this is the second time this has happened.
Generally, I try to be sensitive to where men are in this diseases’ progression. I do understand it makes a big difference when we’re talking from one level to another and that the direction we speak from is central to any comment. I beat the sexual Health drum because no one else in Health care does. Certainly for advanced disease it’s many times ‘too little too late,’ but my hope n intent is to save other men heart ache n regret before damage is done by sheer ignorance…caused by our Dr’s who just flat out don’t focus on sexual Health early, when action can make a difference. Thanks for your understanding. There was, is n will never be any desire to cause upset or confusion. Rick
I had the surgery (including lymph nodes removal) 3 years ago at 70 and currently have a PSA of <.02 but am also 5% incontinent (1 Depend pad/day) and 95% impotent. When I did the analysis pre surgery, I was pretty sure that I would be somewhat impotent after a year or two. Wrong. At 51, I would think that impotence is a larger factor in your decision-making process than someone like me that was 70. I have used daily doses of 100mg Sildenafil (ineffective) and tried injecting trimix and bimix which work really well but sting like crazy. The statistics I have read showed about a 70% impotence recovery rate. British statistics show about a 30% recovery rate. (I can't vouch for these statistics, but they are what I found.) Personally, I know at least 6 others like me that had the surgery and none of them recovered their impotence. On the positive side, even with 100% impotence you will still be orgasmic. So far, I have not needed any other medication or procedures, but Chemical castration scares the bejeebies out of me.
Veg. diatery & Tripple therapy: See youtube
Cancer Treatment: Why a Vegetarian Diet Helps
youtube.com/watch?v=xVsDbUa...
Advancements in Prostate Cancer Treatment and Diagnosis
Aside from John in the Middle’s excellent and in-depth summary I’d suggest a few things for you to focus on at this point of your journey.
If you’re not already going to a Cancer Treatment Center of Excellence and can get to one it’s generally a plus. They can offer patients not just the best treatment options but often help with finding ways to lessen the financial and psychological burdens too. Similar resources can also be found at some of the other Cancer Centers, but that’s not always the case.
Your profile indicates you’re likely an excellent candidate for Triplet Therapy. If your Medical Oncologist isn’t offering it then ask why. Having a GU Medical Oncologist as “quarterback” of your care team is generally the best way to go with stage 4 prostate cancer.
Get hooked up with a Cancer Support Community or similar organization if there’s one in your area. Centers like this are often very helpful for navigating through the maze of overall care options that are locally available.
There will be plenty of time for you to research ‘alternatives’, if that’s what you’re interested in; but right now you want to get going with the best possible Standard of Care treatments. They will help buy you the time to do all the other things you might decide are worthwhile pursuing later on.
Best of luck!
"Having a GU Medical Oncologist as “quarterback” of your care team is generally the best way to go with stage 4 prostate cancer." Super Bravo! This is in fact the thing that I think is missing for a lot of people. Quarterback or maybe coach?
I have noted that there's a lot of money poured into palliative care. And we are beginning to see a little bit of support for exercise for people with cancer - but my sense is the exercise focus is more about quality of life than really making a difference in life expectancy.
I see that the role of coach might be different than that of medical oncologist - problem with the MO role is that one does not get to see them for very long or very often.
And from what I read about oncologists, both here and in literature, and also figuring in the questions of incentives and ego etc, and even treatment preference bias - it's not clear to me that the medical oncologist should also be a coach.
The role of cancer coach, at least in the metastatic prostate cancer world, seems to be almost entirely missing. That's why we're all here on HU. And reading every week on HU plus maybe literature as well, a time expensive proposition.
BillyVolt what a fucking shock. 51? I have dandruff older than you. It is so overwhelming right now but make sure you get an ace Medical Oncologist to guide you through the underbrush and out of the woods....... Don't do anything rational until you check it out. Here is a good place to check things out. You are in for a carnival ride that you never were on before. POST HERE and when you can update your bio...... (don't forget to live and to laugh)
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 09/01/2023 2:25 PM DST
😂
I found the many videos at the Prostate Cancer Research Institute (PCRI.org) to be very informative. Dr Mark Scholtz and many other contributors provide incredibly well thought through advice and detailed information that can help you navigate your way. It is very important to get a good and trusting relationship with your oncologist and urologist. It is also very important to find a nearby support group and friend. This online support group will help you with compassionate informative postings. Tall-Allen gives up-to-date information and thoughtful advice on how to engage with your medical advisors. He also has a website with peer reviewed material. I wish you luck and good outcomes from the treatments.
Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
prostatecancerfree.org/comp...
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.
Good luck. Study your Butt off.
Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
prostatecancerfree.org/comp...
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.
Good luck. Study your Butt off.
Good luck on your journey.
yes
Not what you're looking for?
You may also like...
46 & Recently Diagnosed
diagnosis and has been as high as 7. I am not going through any treatment as of right now, just...
Recently diagnosed and totally lost
12 for 12 positive for cancer. We decided on a treatment path of radiation therapy along with...
recently diagnosed and gathering info
interest are more than obvious. Just getting started on this journey and of course, petrified of the
Dad recently diagnosed
since.
So far he has been receiving hormone therapy (started monthly injections and has now...
Recent Prostate Cancer Diagnose
prostate cancer in Dec 2017. He has a 3+4 Gleason score and his PSA has been steady at 6.4 (as of...
Need advise for my dad recently diagnosed with prostate cancer 
I'M NEW HERE, RECENTLY DIAGNOSED 
Recent Diagnosed - Gleason 4+4=8
Recently diagnosed with stage 4 prostate cancer
My husband has been recently diagnosed.
