Newbie, with recent mpMRI one week ago, see my last note, and my updated bio.
Urologist is pushing me hard to get my TRUS biopsy at UW Madison ASAP, like next week. On the phone to me, in a brusque conversation, he said my picture is bleak. I've never met him in person. He says the biopsy is just the next step and he feels I'll immediately be handed off to oncology.
I posted before asking about transperineal vs transrectal. The urology team here at UW told me they don't do transperineal and that it will be best if I hurry up and just get the transrectal biopsy.
The firehose of info, often conflicting, has me seeking care at Mayo Clinic in Rochester. I feel like a bit of meat on the assembly line.
Next, I'd really like to address the QOL issue. I've been researching for over 2 months, and read the "Guide to Surviving Prostate Cancer" cover to cover. Dog-eared and reread some of it. Been at this forum almost daily for the past couple of months. Read a lot of stories. You all are fantastic and lots of current info from folks has filled my bucket.
But, here is my question. How many of you would really subject yourselves to the provided treatments all over again after experiencing the SEs and having a poor long term prognosis?
I mean I've read here about QOL going down the tubes, sometimes permanently. Treatment modalities are all over the map for this very individualized disease. But it seems to me like if you pick the wrong one, or the team pushes you the wrong way, you're stuck.
I guess I don't see the reservations and the second guessing in too many cases here. I've found some pretty angry and frustrated patients and heard their anecdotes elsewhere. It's alarming.
thanks again for all your support. Many have told me I'm just in the initial panic stage and I'll be fine because my case is similar to thousands of others that continue past this diagnosis and enjoy many good years after treatment.
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RazorSaw
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Your thoughts are provoking and yes so many disparities and misinformation with this beast. How about this - how do you want to die? Cancer is a tough death - just a few month back my sister died of lung cancer.
Two days ago I received the pathology results from last weeks liver lesion biopsy - metastasized melanoma cancer. Found why I was looking for any evidence of my prostate cancer raising its head.
Metastasized melanoma statistical 5 year survivability conflicts with my young healthy fit loving life at 67. I may well be one of the majority of men with prostate cancer that die from something else.
Sorry to hear the results of the testing. I am assuming you had melanoma cancer either before or after the prostrate cancer. As someone like yourself with an active lifestyle and frequent sun exposure I routinely go for a yearly check for skin cancer.
I am asking out of ignorance but you have been so diligent with your testing, etc for prostrate cancer how did this cancer sneak up on you. Is this your first indication you had it.
Thanks! IMO cancer is a sneaky beast despite best efforts. I have seen dermatologists twice a year (different ones) for many years being an outdoors pale skin dude. I self-check frequently and was first eyes on both my melanomas; sixish years ago and several months ago. Both were lower grades with clear surgical margins and clear sentinel nodes.
I am not aware of any routine screening other than visual checks. Interesting that this years liquid blood biopsy identified TP 53 mutation whereas last years was clear; melanoma is one of the causes of this mutation. Also interesting and very grateful this years PSMA PET identified the liver lesion.
RazorSaw: "But, here is my question. How many of you would really subject yourselves to the provided treatments all over again after experiencing the SEs and having a poor long term prognosis?"
I will try to answer your question -- at time of my diagnosis in 2018, my PSA was 52 and after a confirming repeat of PSA by urologist and further exam, I did a TRUS biopsy. It was a non-event -- nil pain at all - just no big deal. It revealed I was a Gleason bad 7 and likely escape from prostrate itself. I had robotic prostatectomy which confirmed Gleason bad 7, spread to at least one pelvic lymph node and a Stage 4 classification. Follow up treatment was 4 years of ADT (Lupron, Eligard and bicalitamide) with no noticeable side effects. 6 months later was 39 sessions of radiation to pelvic area and vacated prostrate bed. Now 6 1/2 yrs later my outlook is excellent though I am on a 6 month recall still.
So "YES" --- I would not hesitate to repeat that same treatment; although, after 6 1/2 yrs I think there would be some other options I could consider that might not have been available then. I realize I am fortunate to not experience the bad ADT SEs that others do.
Like NanoMRI, I received a Melanoma diagnosis 2 years ago --- fortunately mine was InSitu/Stage 0. This was not threatening in same sense as PC but the excision and cosmetic reconstruction as it was on nose involved 4 surgeries over a 15 month period. The reconstruction involving a skin graft and follow ups were about 10 times as bad to deal with as ADT for me despite no life threat.
"YES" --- I would do that again too if I ever have to. I don't have any further need for PC or Melanoma treatment in future.
My two (to date) melanomas were InSitu. First, nearly six years ago was Class 1A, Clark's Level III with 'clear' sentinel lymph nodes. My second, just a few months ago Grade 0. Do not (yet if ever) know source of my melanoma met but it seems as with PC, favorable pathology can be misleading.
Based on my current experience encouraging liquid blood biopsy testing as another tool to not let these beasts have time and obscurity.
I have structured my life so SE's Don't really interfere with my day to day life. In the best health of my life except for the cancer thing. Being diagnosed pushed me to retire at 54 and boy has it been great. Wouldn't skip a treatment for anything. Staying alive for my loved ones and we both appreciate it. Cancer has helped make me who I am today, healthy, happy and constantly on the go
Please don't let anybody rush you or bully you into anything. When you are ready for the next step, biopsy or whatever, then you proceed. My experiences indicate a tremendous amount of arrogance in the medical community. When I was at the point where you are now, I found that taking a break and doing something fun was helpful. For me, that was getting out and catching a few waves or playing a challenging round of golf with friends.
I am very happy I addressed my prostate cancer diagnosis and received treatment pretty quickly. I was convinced I needed treatment and didn't want to give it any room. My SE's are virtually nonexistent. If you're not happy with your medical people, find new ones. Mayo sounds like a good option; I wanted to visit there but they didn't accept my insurance. Good luck.
In my time here on this forum I would say that for the most part this group is not very tolerant of second guessing after treatments. There is good reason for this. Simply it has no value and all you are doing is spinning your wheels. You do not get a do over. Time to move on to the next phase of this disease.
In that same vain you will learn that you are the captain of this ship you are on. You need to take ownership of your treatment options. You need to educate yourself on the value, side effects, etc. of all the options. It is YOUR decision and not some doctor or your medical team. Their role is to advise not make decisions. The most unless question to ask is “What would you do?” to a provider of any kind.
In that regards you need at least three people on the team. A medical and radiation oncologist and a urologist. In my option the last one has limited value after diagnosis. You may bring in others for a second opinion.
IMO You will see a bias on this forum for radiation. That does not mean surgery is bad. It will come down to what you are most comfortable with. Also learn what the standards of care are for your diagnosis.
Take your time in making your decisions and do not look back once the decision is made.
Not knowing you that can be easy or very difficult. Everyone is different. If you are married or have a significant other make sure they are of the process.
In my case my wife listened and said it is your decision. Other have more active partners. Just something to consider.
10/13/2024 is my 10 yr Cancervesary with PSA at 552.2 and #stageIVpca. 840.2 two months later
Huge median lobe of prostate tumor, L ureter lymph nodes filled with PCa collapsing the ureter, still have kidney damage. GL 7 (4+3) and GL 8 in an 18 core blind biopsy
39 chemos- 15 in 2015 and 6 in 2020 both Taxotere
Failed Abiraterone after 9 months, Xtandi after 2, thus the 2nd round of chemos.
18 Cabazitaxels at end of 21 to 22. That failed, so did 28 IMRTs last Spring and monthly PSA at
0.5, 0.5, 0.67
Life is Beautiful
I'm at almost 300 miles on #kamino2024 on the Camino Frances in Spain to celebrate my 10th yr. Old data said 28% chance of five years
Wow Randy, you have toughed it out. I have a friend over on Camino de Santiago now. If you meet Richard F from Madison, WI, he will talk your head off.
Yes, I would "subject myself to the provided treatment all over again after experiencing the SEs". My initial 1/11/2019 diagnosis is shown in my bio. It's almost 6 years later. and I'm still alive. I don't think that would be the case had I not been taking Lupron and abiraterone. Yes, the SEs are awful. My QOL is less than pre-diagnosis. But I still enjoy my life.
IMO, one of the keys is: This is a new you. Don't be comparing the new you to the old you. Look forward not back. Enjoy what you have and stop thinking about what you lost.
Alcoholism and cancer have a lot in common. Just one step at a time and sometimes you regress and need to regroup. Both can benefit from a support group.
If I were you I’d follow through on the great decision I already made: Lose the urologist and get over to Mayo. There you will learn much more. Don’t worry about your next moves, just get better navigation first.
To answer your poll question, I indeed suffered some undesirable consequences from treatment. I am also alive, well and drug free 5 years later. Had I refused treatment to preserve QOL I would be either dead or fighting it in a very poor position.
As such I have zero regrets. This is not a disease you want to willingly risk dying of if you have a choice, and you do.
I also think I can speak for most of us when I say any doctor that tells you ‘your picture is bleak’ should be fired immediately. Not because it’s an insensitive thing to say, which it is, but more that it’s also both ignorant and arrogant. You haven’t met him, and you haven’t had a biopsy yet! He can’t even pretend to know how ‘bleak’ your picture is or is not.
I have second hand knowledge of an 84 yr old who passed this last winter from untreated PCa and it was an awful demise. He was a trooper and did not let anyone know he was dying of PCa but the painful last year was almost unbearable to his friends and family around him.
My husband’s diagnosis was delayed due to an arrogant MO. Therefore, over five months without any treatment he rapidly went downhill.
Was in constant pain, lost three stone in weight, slept most of the time, didn’t eat or want to do anything. Just curled up in a chair feeling utterly dreadful. I truly believe at that stage he had only a few months to live.
Finally another care team found extensive lymph and bone metastases (including a fractured femur!), PSA 1120, Gleason 10 with neuroendocrine involvement. His outlook was very bleak.
That was two and a half years ago. He is now on Prostap and Apalutamide, has had hip surgery and radiation to the prostate. He is living his best life. He is out most days, busy volunteering, seeing family, holidays and all th normal stuff of life. He is pain free, a little fatigued and some brain fog, but nothing that is stopping him. We have seen both of our children get married in that time, moved house to a beautiful location and still have plans for more.
Having seen what happens if you don’t receive treatment I wouldn’t recommend it. Obviously there are different levels of PCa that need different approaches but once treatment is needed the alternative is not nice. SEs are a breeze in comparison.
I love your button. I'm not trained for it either. But persist I will. Thanks so much for your note of optimism. Deep bow and kind regards to your hubby.
I understand your hesitation. I would suggest doing a dp dive into themossreport.com and pcri.com for some confirmations of any of your questions. They have been a god resource for me.
I too am a newbie. I have just completed 1 year of IMRT, HDR and Zytiga/Lupron protocol. My biggest QOL issue has been debilitating fatigue, but from conversations on here, that is quite different for everyone.
I would definitely go through it again. Just to get me a few more years with my wife. Right now I am doing bucket-list travels for as long as I can.
My original prognosis was 1 year without any treatment, and a 52% chance of 5 years. I just passed my 1 year point, my PSA has not budged from minimal, and I have been able to step down on my Zytiga dosage from 1000mg to 500mg without any negative impact due to a good diet and supplement protocol.
Everyone's diagnosis and situation is different, but that is my experience and situation. I am a proponent of death with dignity and if things start to get bad, I will pursue that. But at my 1 year, my MO said I will definitely make it to 5 years before any serious changes occur, based on my progress thus far.
The strategy is to kick the can down the road as far as possible while other therapies become available. I still have several options with existing therapies should my numbers rise.
Thank you for the references Sagewiz. I note in your profile you used supplements prior to treatment. Which one? I've read about BROQ and Vit D being protective.
I work with a naturopath who customizes many supplements and modifies them regularly, but the ones that I have prioritized have been Pectasol (modified citrus pectin) which has excellent clinical evidence to support it, Pomegranate supplement (Pom-T). I have also eaten lots of berries, lots of mushrooms (especially medicinal - Reishi, Lion's mane, maitaki, etc.) Cut out alcohol and most sugar, reduced carbs and dairy, no processed food, and try to have as much vegetarian diet as possible only eating meat on occasion other than fish and chicken. the cancer cookbook "One Bite at a Time" is a good starting point for nutrition. I do take a high quality D supplement because my D is very low as is my potassium and iron. The mushrooms help with the D. And I also eat as many pumpkin seeds as I can.
Hooray for a pumpkin seeds. I'm a fan and I'm usually eating them all the time in makeup iron in my diet after I give blood. That's a lot of excellent advice there. And I am ready to pursue more of those options.
Well, with 200,000 +men here diagnosed with PCa each year....yes your case is similar to many !!! TA has posted studies showing that men who delayed treatment by 6-12 months hadlong-term results very similar to the results for men who had almost immediate treatment. Still, that doesn't predict your individua fortune if you delay biopsy, diagnosis, and treatment. I agree with your Doc in one way.......... PIRADS 5 indicates a good probability that you have a "significant" PCa, as does the 35 PSA.
TRUS has a low risk of any significant adverse SE, but there is no guarantee. Does insurance, location prevent you from making MAYO your treatment center? If not, go for it!!!
If you are having a crappy - less accurate TRUS biopsy, insist on a 3TmpMRI first to give targets to sample butt understand that a crappy TRUS goes via the rectum and CAN NOT reach areas in the prostate that often has HIGHER GLEASON CORES.
A Transperineal Biopsy is much better and has become the preferred method around the World.
Saddened to read your reply. Just as a reference for you to consider --
" ... Transperineal guided prostate biopsy (TPB) is an alternative method for sampling the prostate. It involves biopsies taken via a grid placed on the perineum (area between the scrotum and rectum), and is usually performed under general anaesthetic or sedation and loco-regional anaesthetic. The technique can also be used to ‘template map’ the whole prostate, if the MRI is not absolutely clear. Mapping involves biopsies taken from all zones throughout the prostate every 5-10mm. TPB can also be targeted to suspicious areas on MRI (MR-targeted biopsies).
The principal advantage of this technique is greatly improved diagnostic accuracy. When samples have been taken using the Transperineal route, detection rates of cancer are significantly improved compared to TRUS biopsy. Further, anterior and apical areas of the prostate are more easily sampled compared to standard TRUS biopsy. In addition, the rate of sepsis is significantly lower, as biopsies are taken via the skin, rather than via the rectum. However, reported urinary retention rates are higher than following TRUS biopsy, varying between 3-30%, although this risk can be lowered through a short course of an alpha-blocker medication starting 2-3 of days before the procedure..."
above from -- Prostate Matters.co.uk
MY Dr. only performs TransPeri because he has found PCa when TRUS found nothing present and even when MRI showed nothing present plus he found errors in MRI's that showed PCa and the TransPeri showed clear.
Just a *Head's Up* and the reason the Doctors outside the USA prefer Trans Perineal to better see what's in the prostate for their patient's health.
p.s. - my Dr. performs a 3Dimensional Mapping Biopsy using the Brachy Grid. My initial Biopsy yielded 100+ core samples.
Here is my 'woulda-coulda-shoulda' list of, what I would do differently in my next life with PCa. Use from it whatever makes sense, sounds right for you and is of use. Whatever you do dont put off treatment. PCa is not like wine...and you cant go back. Study, get the best info you can, make informed decisions, get at least 2 medical opinions, then ACT and dont look back. In PCa you have to lean forward for the rest of your life and defend what health, QOL and time you have left. I do have so many regrets, but on balance I am still kicking, doing as good as I can possibly do and looking forward to another year on this good old Earth. Best of luck...Rick
Well, you don't really say much about YOUR situation, other than teetering on the fence of being diagnosed! What's your story in more detail? Health history, family history, and why you're being proposed to have a biopsy? Anyways...
If standing at the edge of a cliff, with a revolver playing Russian Roulette... Now ask yourself this... If having the option to remove one of the six bullets before the next trigger pull, would you? How about given the option to remove three of the six? Lol, bad analogy I know, but it serves the purpose.
We all meet the same fate, question is do you want some control over it...? Having Cancer is not a death sentence! Not everyone who has cancer experiences the worst of it, not everyone dies from it.
The internet... Well, those that treat once and are done, generally aren't coming online to gloat about how great they're doing! That's 65%+ of patients in first line therapy. Even those 35% who fail and go on the second line therapy, another 2/3 of those then are successful in abating their cancer ... So then...
QOL? Hmmmm... Interesting question!
What's my QOL, when being diagnosed provides a new paradigm for appreciating time, knowing the value of every minute? Regardless of circumstance? It's a difficult question and falls to the fact that MY life, MY likes, MY tolerances, etc., etc. are not YOURS.
Cancer, and it's journey, isn't about second guessing, I would suggest not going there, dwelling on the "What If's".
So I'm having difficulty understanding your question. I have zero regret, zero second guessing! I've done all I can to educate myself, to be an active participant in decisions regarding my life, my care, my path. "I" decide ... And because "I" do, I have zero regret, no, geee, I shoulda done this or that because it would've been better. Nobody knows the other path not taken... And nobody knows, until you pull that trigger, what the results will be! Everyone is different, everyone is an individual and responds to different treatments differently.
So word of advise, is to not take too seriously, all that you read in Dr. Google! Every studies can throw you off, you're not a number! And numbers from statistics lie! I could go on, but I think I made my point.
Don't dwell in the negative, don't expect the worst, channel positivity and enjoy your day! You haven't even been diagnosed yet and you're worrying about the wrong things! Yes, panic, anxiety are part of the journey, but can become bad, only when you allow it, empower it. The mind, is a powerful tool! Use it! It can have healing effect, were not talking about being in denial and ignoring where you are, although that is one stage of grief that may come to pass. But being happy, regardless of circumstance is a powerful place to be.
I'll be short, my journey is posted about, but have a rare presentation of this disease without the ability to prognosticate my situation because there are basically just a few who've ever had their cancer do what mine is doing or has done. Diagnosed @ 54 and this didn't reveal itself until my mets were discovered by accident after already having 1st and 2nd line therapies, scans and previous treatment not uncovering it, etc a few years into the journey... But my burden, my worry, my concerns today are much lighter, I don't dwell on it much, but instead live every day as it is just a normal day. Try to figure out what's happening tomorrow, what's the next trip, next visit, next meal out, where we going what we are doing, etc. Again, only forward! Can't move forward if all you do is look behind you! If it all ended tomorrow, yeah that would suck! Lol... But I would honestly say, I have no regrets!
I wish you the same... That you may see this clearly and honestly, and avoid the dark, avoid the heavy chains that can be dragged. Walk tall, shoulders back and skip a step here and there! Smell the roses, take a trip, go eat your favorite food, visit friends, family, etc. THAT is what it's all about
Coolone, thank you, and yes my question is not concise. But I do appreciate every perspective received here in the last couple of days. And I totally agree with you, this is not the place where I'll find the folks who had quick, affirming treatment that caught their PCa early and are now feeling 100% cured. I am fortunate to have some friends and heard anecdotally from a few men about how they got through it, easily and quickly.
I'll add to my bio here so that picture you asked for is more completely developed.
"How many of you would really subject yourselves to the provided treatments all over again after experiencing the SEs and having a poor long term prognosis?"
I had no side effects of from my 2021 prostate radiation or my 2023 pelvic radiation. I am not having any unpleasant side effects from 9 months of doublet therapy (Orgovyx and Abiraterone/Prednisone). At age 82, I feel as good as ever, and look forward to several more years of castrate-sensitivity, after which there are more options. If I had to do it all over again, I would start exercise a little sooner, and not wait 3 years before starting the pills.
You will know more about your prognosis after you complete diagnosis and get into treatment, and I expect you have very many good years ahead.
Not everyone has honorible side effects. I tolerated radiation, surgery and antitestosterone therapy fairly well. Continued to play pickelball, cycle (albeit not as fast), play with grandkids, built furniture, golfed, played the piano (poorly but not from the drugs), and wake boarded. I lost all interest in sex which I found very interesting. It is not as bad as losing the ability to have sex but maintaining desire. Here I just didn’t care. I did 2 things that helped with side effects. I exercised so that I averaged 500 calories burned a day and I lifted weights with a trainer. My brother had a very similar experience. No question I would repeat the experience. I am a physician. I have seen people die from prostate cancer.
My Dad was diagnosed about 5 years ago with a huge PSA number. He had some regional Mets. He opted for six rounds of Taxotere. It was not fun, but manageable. Anyway it was totally worth it. He had a ton of cancer kill! No detectable Mets and no psa. He stayed like this for about two years! He is now on ADT and a generic low dose Zytiga.
I’ve been doing this as long as anyone, 12 yrs in.
In that time I’ve seen one of my kids get married and actually married another.
2 grandkids later and a steady stream of “your like Superman” I go to the gym regularly and always have. In my opinion the gym is the reason I’m still here.
I’m 59 married 35 yrs. We still have sex with the aid of a penile implant. Gotta take care of the wife. I have a drink every night and a piece of chocolate. I still ride my motorcycle regularly.
I feel like shit a lot of the time, fatigue, hot flashes, emotions.
Would I do it again?
In a second. My family wants me here and yours does too. It’s a tough transition but you’ll do it because you’re a stud. It will all become a new normal. Take it one day at a time.
Four years ago yesterday, my doc told me that my cancer was stage 4 and that I had 18-24 months to live. Turns out he was full of excrement, and I am still here, and still enjoying my life.
I kinda look at my cancer SE's like I look at the SE's from a knee injury I sustained playing HS football. Wish I didn't have the injury, but I learned to wear a brace when needed, elevate and ice the knee when it was swollen, and to avoid certain movements and activities. With my treatment I have some battles with my emotional regulation prior to and immediately following my Firmagon implant, I am weaker than I think I should be, and the prednisone has wreaked havoc on my skin - but, I have a damn good life.
Thanks to my treatments my wife and I had the time to improve our relationship to a level we never expected, I am a part of my kids and grandkids lives (going to see my grandson graduate in two years), and planning to make it to my youngest grandaughter's graduation (she's 6 now). I volunteer, I am an active part of my community, we travel and camp, I am taking classes at the local community college, we just bought a new house, I've learned to cook some of my favorite dishes, etc. Life is full and often rewarding.
During the last four years life has also thrown up some difficult challenges, but I'm glad I was able to be here for and with others as we rode out those tough times. I was stunned when the doctor said I was a goner, but after a few days to process the news I arrived at a new philosophy. "I'm gonna die, but I'm NOT dead today!"
You are in denial, my friend. Stop playing around and get your biopsy. Then evaluate the best way forward with a good oncologist. Struggle to maintain quality of life, but don't let the beast wall all over You.
Stage 4B BRAC2 positive, 18 months on ADT and Nubeqa and my biggest problem right now is that my Dolphins have no Quarterback!!
You know I have been stage 4 at least since 2017 and too many treatments and trials to think about and what I have found is you make your decisions with the information you have at the time and move on. As far as QoL issues you learn to live with what you have left. I have mets in my left shoulder and so I can’t get a replacement.I have no rotator cuff .So I live with it and it just becomes routine. I started Nubeqa a few months ago,. PSA went down first blood draw and It just went back up so I will get a PSMA in a few weeks and we will go from there.
Thing is when I got the news like every time it happens, I went into a deep funk. A friend called and said hey we live in the present. And like always I dust myself off and say I am good today and I will deal with what comes next when it does. But for today I am good. The side effects we learn to live with one at a time and so it is not so bad.The Nebula gives me hives so I lather up with cortisone cream, itch cream a shot of Nupixant and take Allegra hives. I take Adderall for the tiredness that comes with my hormone shots and Trimix for sex. I make the best of what I have left and move on until the next treatment and I will figure that one out then. My life is not over, it is just different.
I have known for 9 years how this is going to end. But until it does I will live every like it was my last day. Have you been to Machu Picchu?
hey RazorSaw. If I could do it over again I would have entirely avoided an ultrasound biopsy and opted for an MRI guided biopsy. The ultrasound doesn't really do much other than keep the needle in the prostate. So essentially the doc is randomly pulling core samples to have them analyzed. An MRI guided biopsy will focus n the discolored/darkened/not so normal part of the prostate which would likely be where the tumor is. Otherwise they're just drilling for oil and might as well use a witching stick imo.
Regarding QOL, please read my bio. According to my wife, I've been through hell and back. Life is different certainly. Quality of some things are gone, opens the door and makes room for other things to seek out. It's all about attitude, the will to live and enjoy life. My take anyway. FWIW, had I not pursued treatment, I would not know my grandson, see one of my sons get married, see my daughter get married, visited the grand staircase in Utah (That's five National Parks), hang out at a dude ranch in Montana, visited Big Bend National Park, Yellowstone, Mount Rushmore for the 6th time, Devils Tower for the 6th time, visited Washington DC for a second time, swim in the ocean in Mexico with my wife again.... It goes on and on.
Finally as others have said, don't let anyone push you into anything. My advice since you asked - Stay away from 90% of websites and stick with this one. Learn medical terminology, then learn it again. Diets won't cure your cancer, but changing it may slow it down - there is no proof either way. Exercise please. If you are into personal support groups find one locally. Don't advertise your illness. People will never treat you the same. As far as the Mayo goes, yes they are busy as is any good facility. So what. So are many cancer centers. You're not there to be coddled. And the less time they spend with you, the better off you are. They spend more time on the sickest patients. Use Oncologists, not Urologists, at least after the biopsy. Lastly, consider mindfulness. I hat the tea but you need to find a place to go in your mind to calm yourself, not matter what comes your way. You got this!
It is overwhelming but you picked a good book to read on the subject. Generally speaking, someone who is just diagnosed is dealing with basic issues of prostatectomy, radiation, braca therapy or watch and wait. This requires you to decide how serious it is based on your gleason score and your most important goals of sexual function, potential unintended side effects and your confidence in the approach you take is best for you.
After that, there are many treatment options out there and continuing to do your research will give you well-informed questions to ask your MO or RO to make a decision.
Based on my own experience, I think it is hard to say which treatment will really extend your life in a meaningful way with few side effects because everyone is different and some treatments may not have enough data to make a prediction about extension of overall survival.
I had Docetaxcel and Lupron after a prostatectomy in 2016 based on a recent stampede study. I had one positive lymph node after surgery and a Gleason 9. I wanted to hit it hard, right off the bat systematically.
It remains to be seen what the benefits may have been for chemo but after I quit chem and was still on lupron, all was good. Then I stopped Lupron to get an Axumin scan and my PSA skyrocketed. My take is that chemo is carpet bombing when you don't know where the enemy is. I have long-term neuropathy, and other issues related to it. I did find out that I had a lesion on my left femur and tumor near my bladder though and was switched onto Zytiga and a SBRT treatment for the lesion. It shut everything back down.
However, two years later, I found out that the SBRT also damaged my perineal nerve in my leg which paralyzed my lower leg and ankle. Even so, I would still have had the SBRT.
So, it's individual and no treatment lasts forever. We all do the best we can and looking back on what if's is never useful. Good luck!
Hey there, RazorSaw -- I live in the same area as you & sounds like the same docs. My experience was they were very pushy but at the time, weren't up to speed with the latest technology. Instead of the TRUS biopsy they offered, I paid my own money for an MRI guided biopsy that allowed the doc to exactly biopsy the suspicious lesion. Those darn TRUS biopsies are grid based and can can miss the bad spots (of which you have two, right?). They are also cash cow procedures for urologists.
As others have suggested, I'd say find a medical oncologist who specializes in prostate cancer and discuss if it's reasonable to assess whether you are already metastatic (PSMA PET) or additional diagnostics (Decipher; genetic testing). Also, look into whether there's a local doc who does the MRI guided biopsy.
I'd be happy to talk on the phone or meet in person. Let me know ...
They gave my Dad a year, and he was around for 21. Last year was lousy, but 20 were really good/great. They told me 5 years on average, but I'm opting for aggressive treatment. I got traditional biopsy without issue in August. Starting rad on bone Mets next Wednesday to the following Monday.
Again, thank you all for the kindness and attention you have paid to my question. You contributed greatly to my peace of mind as I move ahead in my treatment.
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Moving on to Provenge/Sipuleucel-t
Nice to meet you ... to meet you, nice!
Optimal Management of a Man With Recurrent Prostate Cancer
First phone visit with academic hospital on my biochemical recurrence post robotic radical prostatectomy (University of Wisconsin - Madison)
