Life After

Рет қаралды 9,557

Күн бұрын

Пікірлер: 57

@TERRY-cb2ku 6 ай бұрын

I go for my biopsy on the 26th. I pray that huge advancements are made, very soon, in the treatments for prostate cancer that won't be so destructive to men's lives.

@Lola.1952 6 ай бұрын

Many new advancements lately. Stay confident 👍

@charlesgair8608 6 ай бұрын

I Just Beat Gleason 8 Prostate Cancer If It Hasn't Spread It's Not That Difficult.And I Refused To Go On ADT Hormone Therapy .The Key Will Be If Its Still Confined To The Gland .

@stadtcowboy3684 6 ай бұрын

Wish you good luck. I go for biopsy on July 15. My pi-rads score is 5. I'm scared.

@simondumoulin2254 6 ай бұрын

@@stadtcowboy3684 Godspeed brother! Good luck and take care

@eddiegardner8232 6 ай бұрын

Ben had a harder time than many of us. I was Gleason 4+5 adenocarcinoma 3 years ago. My RARP was bilateral nerve sparing, bladder neck sparing, no extraprostatic-extensions, but I did have one hot pelvic node on ePLND, so I did nodal radiation also, then 20 months of ADT. Now I have been on TRT for 11 months, PSA=0.04 or less, and feeling fine. IDK what the future holds long term, but I feel as well as before diagnosis and surgery. No incontinence, fat gained on ADT all gone, muscle strength returned. Don't talk yourself into thinking about the worst possibilities, when they aren't that likely. Good luck!

@ShawnHepper 6 ай бұрын

This was great. I hope to see more patient conversations. So many docs mention side effects almost in passing, but living with them is a different story. I have a very supportive wife, which helps immensely. I am 53 and had prostatectomy in 2022 at 51 and salvage radiation in 2023 at 52. I have been on ADT (Lupron and Aberatiron) for a year with a year left, maybe life for lupron. When I went on this journey, I knew a lot about the side effects, but actually experiencing them was more difficult. Someone mentioned earlier that interviewing a urologist who has been through PC would be good. I agree. I'd also like to hear from a caregiver on how their life changed with their spouse. We can't forget about caregivers because they are the hidden support and make life better when dealing with PC.

@stevemarriott2788 6 ай бұрын

I love you guys. What a wonderful world to know there are people like you out there. Thinking of you with love.

@topmarketvalue615 3 ай бұрын

Thank you for your uncommon bravery & determination. I just did surgery with Gleason 9, & PSA 14.68 just 5 days before surgery. Wrong course, I should have gone with radiation at UCLA. Nerves were damaged or completely damaged.

@ancanfoundation 6 ай бұрын

Thank you Alex and Ben - AnCan loves you both!!!

@ricknowak4582 6 ай бұрын

I thoroughly enjoy these videos! The lady is such a great narrator. This was a very good video . I listen to all of them but this was a good one.

@gil-youngchae5856 6 ай бұрын

Thank you so much for your experience. Thanks, Alex for helping patients and families!

@wongsiang1133 6 ай бұрын

Thank you👍👌 so much for Ben and Alex for these valuable informations because I am also suffering from prostrate cancer at moment.

@robwells230 6 ай бұрын

PCRI needs to hear more from patients. We hear from doctors who really know nothing about what patients really have to deal with except what drug companies and the NARCO MEDICO CARTEL wants them to know. I want to have a doctor who has personally been on two years of ADT CASTRATION, then I might believe what he tells me.

@simondumoulin2254 6 ай бұрын

I completely understand you brother. I have been on ADT for over a year now. I have every possible side-effect, except having a stroke. I lost my hair everywhere on my body, except for some facial hair and on my head. I gained 60 pounds and lost muscle mass. I wake up 3 times a night to urinate. I am unable to have relations with my wife. Mood swings, extreme fatigue, sleepiness, backaches, violent headaches, depression, melancholia, joint aches and osteoporosis. But that is not the worst part..

@ricknowak4582 5 ай бұрын

Rob Wells excellent! I 100% agree! You referred to the drunk companies like Norco medical cartel! Exactly! That's how I feel! Go shots cost between 4:00 and $10,000 each! Of course they want to convince everyone that hormone treatments are necessary! That's a no-brainer! I recently seen videos on the fact that.... "LOWERING" testosterone is ..... bad

@robwells230 5 ай бұрын

@@simondumoulin2254 They obfuscate the horrific brain fog side effects that turns us into half dead ZOMBIE EUNUCHS making life insufferable along with a huge list of other quality of life destroying effects. Treatment regret turns into outrage when we are coerced, deceived, extorted and intimidated into this cruel and barbaric treatment without our FREE AND FULLY INFORMED CONSENT.

@peterhaye2004 6 ай бұрын

Really helpful. Appreciate what you do.

@Rockinrn 6 ай бұрын

Thank you Ben!!

@jarettcron8894 6 ай бұрын

Great interview, Thank You

@diegofcam 4 ай бұрын

I read in his blog that ADT is failing, I wonder if he was advised of doing triple therapy instead of only ADT.

@mperloe 6 ай бұрын

Alex, You might consider changing the graphic or title for this video. It implies it would just benefit those with advanced disease. This video would be helpful to anyone who receives a prostate cancer diagnosis.

@ThePCRI 6 ай бұрын

Great suggestion, Mark! Will do!

@doughumble4700 6 ай бұрын

Please, please address this issue in a future episode. I had a Radical Prostatectomy after I got divorced. I do not have that "great wife" to give me support. How do I approach the subject to a potential mate? I really don't seriously pursue women because of my ED & mild leakage. I use a P pump regularly, and I confidently think I could have an intimate relationship. But I don't pursue anyone seriously because I have no idea how to approach the subject without scaring them away with the conversation. Many of the channels I follow always discuss the importance of a current relationship but never the single guy looking for a new relationship. Please consider this.

@carladerenzy3674 6 ай бұрын

I met someone new, and a month after meeting them, I was diagnosed: 525 PSA, metastatic, went immediately on Orgovyx and Nubeqa plus Lutetium trial soon after. She was my first phone call. I'm 61, she's quite a bit younger. Fortunately, she read as much literature as possible plus watched dozens of videos, and she fully accepted what the road ahead would be. For me, the most common side effect (erectile dysfunction and loss of libido) hasn't been my experience, although erection is not as robust. Still, the fatigue and amplification of emotions that the ADT's cause (low T, low seratonin) has been a killer. I didn't have prostate removed and have been on a super-strict virtually carb-free, vegetable-based diet except for fish (salmon and sardines), so the exercise and diet is helping a lot. I agree with the speaker here that the drugs work to change your appearance, so rigid exercise is essential if you want to maintain muscle and bone density. I'm into my 15th month of the ADT's and anticipate a possible "hormonal holiday" in 3-6 months. No new cancers since April, '23, and PSA now .1. Still, the mental impact is strong. I temper it some days with one Lorazapan, and at night I take 10mg of Melatonin, which has other benefits in addition to sleep. My new partner has been true to her word, and having her experience the therapy and hospital visits vicariously has been a big help.

@duggartaiwan786 6 ай бұрын

❤

@garygalarza-fg3bj 6 ай бұрын

What do they mean when they say prostate intact no broad contact no focal bulge very low likelihood of ece grade on mri 0 put pirad4

@jeff6899 6 ай бұрын

Glad for this video ! Though still do not have complete answers. I had prostatectomy surgery. My cancer was growing predominantly on one side, wedged between urethra & edge on that side. My pathology report did confirm I had the suspected 4 + 3 = 7 Gleason score off a prior Targeted biopsy (post MRI w/ contrast)...but apparently I had the intraductal (I don't believe ductal) feature....on the surgery pathology report. No doctor to date has given me a "clear" indication as to what this meant ! Still somewhat in the dark...I had a CT scan, Bone scan, cystoscopy just prior to surgery---all were ruled negative for any cancer spread. The very top of my bladder neck was also removed druing surgery. I I did have a recurrence after early salvage radiation to the prostate bed...my 1st 2 PET scans (6/2/22; 3/24)--were negative...but the 3rd one (5/24) did show a small spot in the nearby pelvic bone. Extrapolating--My PSA was at a level (by latter recent test time date) where I should have had a roughly 55% or greater chance of showing up somewhere--which it finally did...to this nearby spot. They went back to the 2nd PET scan then to compare...and though readily inconclusive---they could see where maybe something was just starting to appear. A quick Biopsy confirmed cancer. I did go back on low dose Casodex; then got a lupron shot for the first time 2 wks later. The low dose casodex by itself did appear to be readily lowering my PSA (something was)...Fyi--I was on the low dose casodex for nearly 9 mo's b4 (after which my experienced radiologist initially thought I had no presence of cancer left--7+ mo's after salvage radiation---though I also supplemented w/ lots of homeotherapy, which may have had a positive effect & fooled him. So whatever type I have,--is "apparently" responsive (to date) to both ADT & PSMA PET scans... I just went thru 5 daily radiation treatments to eliminate that spot. Virtually no side effects; so far, nothing unmanageable on ADT either. ...Fyi, I was fortunate to get over incontinence fairly quickly--though I bike & exercise a lot--which I believe was helpful. A recent genetic test has shown I have no known genetic link to prostate cancer...virtually no family cancer history any known relatives

@simondumoulin2254 6 ай бұрын

By what you are describing, it seems like you suffer from the same condition as myself. However, my cancer is more advanced than yours. My diagnosis: Prostatic intraductal adenocarcinoma high-grade. Gleason 9(4+5), PSA 29, stage 4, metastatic The cancer has spread to my lower back and lymph nodes. This form of cancer is the most aggressive type and the most resistant to treatment. The outlook: 40% of men live 3 years after the diagnosis, 25% reach 5 years and less than 10% make it to year 10. It took me a few weeks to get all of this information and I had to pry most of it from my uro-oncologist. You are your best advocate. Only you know how you really feel. I have been on Casodex, Zoladex and Erleada. I also underwent 25 highest possible intensity beam radiation therapy sessions. As an example, I suffered terribly from the hot flashes and couldn't sleep well. My psychiatrist prescribed 100mg of Pristiq (venlafaxine) in the morning and 50mg in the afternoon. This alleviated 90% of the problem and I am mow getting sufficient REM sleep. My oncologist offered me nothing. My GP has also been a great help in keeping me comfortable and managing pain. Don't be afraid to ask questions or get a second opinion. Godspeed brother

@ricknowak4582 6 ай бұрын

I have four Gleason seven cores. I haven't started treatment yet. Because I am terrified that when I start either treatments that I will become a full-time customer of the medical profession. I'll be on medications giving blood tests the whole gambit. Which terrifies me. Listening to stories like this gentleman what he went through and what he's going through.

@carladerenzy3674 6 ай бұрын

I've been on ADT's for 15 months. I do visit the hospital every few weeks. I can't possibly know what you are going through, but I was initially quite anxious and frightened after getting a metastatic diagnosis and a PSA of 525. It's now .1. The acts of taking the ADT's (I take two) and also participating in a Lutetium trial actually demystified the process for me. My biggest side effect was/is the psychological impact of having my testosterone reduced and the fatigue, amplification of emotions, feelings of hopelessness that creates. It's difficult to avoid becoming at least a temporary customer of the medical profession. I hope you make a decsion that sits well with your demeanor.

@ricknowak4582 5 ай бұрын

Thank you so much for your reply my brother! I've been listening to stories about ADT and the fact that lowering your testosterone may not be a good idea! In fact Mark Schultz talked about this very topic maybe a month ago. It's sort of makes me wonder about hormone treatments and their bottom line. Money. I know it's terrible to say but that's how I am feeling. I do research obsessively concerning prostate cancer and it's treatments and side effects. Have you ever seen any of these studies that I am referring to? And these studies are from professionals! Oncologists etc.@@carladerenzy3674cuz the fact they want to give you something that weakens your entire body makes you depressed, loss of bone density, terrible headaches (to some) ETC. I would think to make your body as HEALTHY as possible (diet/exercise) combat cancer not "WEAKEN" it. I hope it doesn't sound like I am in... Denial and I am being mean. In a way maybe I am being in denial I'm looking for an.... "OUT)?

@Eclectic_RN 5 ай бұрын

A CT scan that showed lung mets, when the PSMA did not show---something is wrong there. Those PSMA lung mets should have glowed like stars. So the takeaway is: If you have a great significant other, you'll be fine. If you're solo--not so much....

@judithhall9643 5 ай бұрын

Men have empire building tendencies so support groups can end up doing fund raising and handing out money for research which they get very little feedback on etc which is very laudable but sometimes actual support to members can fall by the wayside and very little support goes on. It’s true women talk and support differently.

@williammack571 6 ай бұрын

So far I choose to die

@ricknowak4582 5 ай бұрын

William can you please elaborate on what you just said? That you would choose to die? I assume you mean you're going to refuse all treatments which I really believe you. I have prostate cancer it's 70 years old and I had two biopsy opinions. First one wasn't too bad 3 + 4 = 7 low volume 5%! The second one at John Hopkins came back 3 + 4 = 7% 40% and 50%!! WTF!!!! I still want to do active surveillance. I am currently waiting on a third opinion. July 18th 2024. Appointment with another urologist. My doctors want to start treatment immediately! And I don't think it's that bad! To panic! And doing research I have found many reports saying that lowering testosterone is a.... B A D IDEA!!!! ADT should be spelled... " C A S H" !!! These medications are so expensive and they're always coming out with. " NEW" ones !!!! Please reply William I really want to know what you are thinking. Thank you!

@supertrix6628 17 күн бұрын

hormone therapy after a radical prostatectomy is 100% waste, cant get prostate cancer again, because its gone, the reason for hormone therapy is because you have cancer in other places neary by as well. not prostate at all. cant get cancer is something thats been removed and physically gone. cant get a PSA any more after it, PSA is prostate androgen, something the prostate makes, if its gone its not making anything. the other stuff means have extra other kind off cancer not just prostate cancer.

@ricknowak4582 6 ай бұрын

I just don't trust the pharmaceutical companies.

@ricknowak4582 6 ай бұрын

Dr Schultz talked about hormone treatments for prostate cancer and he says that studies recently have said that LOWERING testosterone has NO benefit combating cancer. That in fact lowering the testosterone might be worse!

@Mr406Galaxie 6 ай бұрын

PCRI has a video on this very subject. I encourage others to watch that video.

@Lola.1952 6 ай бұрын

Where that video? I'd like to watch it as my hub has just gone over 2 years HT You mean Dr. Scholz said lowering testosterone is no good🤔

@Lola.1952 6 ай бұрын

@@Mr406Galaxie Schultz* (sorry)

@ricknowak4582 6 ай бұрын

@@Lola.1952 Yes he said that. He didn't actually say it's NO good but he says it needs to be questioned. It was a recent one. Like within a month or two! And I've seen other studies concerning that. He was saying for.. favorable intermittent cancer you don't NEED to take ADT.

@Lola.1952 6 ай бұрын

@@ricknowak4582Sometimes, the more you learn about this issue the more confused you become. Different medical opinions or streams make you hesitate and you are never certain of having chosen the right decision. In any case I guess age, stage, personal priorities etc etc are factors to take into account when it comes to treatments. My hub had recurrence four years after RP, at 73 year age. He had RT to two spots and to the pelvic area as a prevention. Two years hormone deprivation and his current PSA is 0.01. Not too bad therapy side effects.

@ricknowak4582 6 ай бұрын

Sorry but you mumbled when talking about the urethra problem you have urinating. Can you repeat what you were trying to say about what cancer will get you urinary problems?