Stayin' Alive with Prostate Cancer
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- čas přidán 24. 07. 2024
- The theme of this podcast is staying alive and dealing with prostate cancer. Mark shares his experience with treatment and offers words of wisdom for those who are newly diagnosed or facing recurrence. He emphasizes the importance of not letting the cancer get the better of you and staying positive throughout the journey. The podcast covers topics such as the timing of treatment, the different stages of treatment, and the importance of finding a support system. The goal is to stay alive and fight the disease every step of the way.
Takeaways
▪️ Prostate cancer is the second greatest killer of men in the United States and around the world.
▪️ The goal is to stay alive and not let the cancer get the better of you.
▪️ Timing of treatment is crucial, and early detection can lead to a fully curable cancer.
▪️ There are different stages of treatment, including surgery, radiation, and ADT.
▪️ Having a support system is important for emotional and mental well-being.
▪️ Staying positive and having a warrior mindset can greatly impact the outcome of treatment.
Chapters
00:00 Introduction: Staying Alive
05:35 The Importance of Timing in Treatment
09:52 Navigating the Different Stages of Treatment
13:38 ADT as a Temporary Solution
22:13 The Role of Support Systems
24:11 Conclusion: Keep Fighting and Staying Alive
Very well said. I'm having a reoccurrence and starting treatment again. I really appreciate the boost of positivity this provided. I needed the added strength and understanding to keep up the fight. A positive mental attitude will do wonders! Thank you for your time and attention to these videos. Add me to the list of people that they're helping. You and i are on our way to an astonishing recovery. God bless 🙏🏽
Thank you very much Mark I appreciate what you are doing to raise awareness for people with prostate cancer
Thanks mark I had my prostate removed 2020 6 months later high psa reading was put on zoladex injections and had 33 sessions of radiation treatment and I’m now cancer free with yearly checks all the best on your journey keep posting and good luck
Merv, this is what we all want to hear! Good luck to you.
Merv, what side affects?
@@grahameroberts8109 with radiation and hormone I had hot flushes tiredness took 12 months for testosterone level to rise now I’m like a 18 year old again nearly back to full continence erections with viagra
Hi Mark. Great video. I have followed you for some time. I had surgery 18 mths and doing ok. I fully agree with your fighting attitude. I was motivated to my getting into shape when my psa was rising thinking it was BPH. I carried that forward as my diagnoses progressed to cancer. I continue my workout regieme with the possibility of a relapse. Staying in shape is great and will give the best hope for the future. (I too had a positive margin)
Decades ago, I took communion regularly to a gentleman that had prostate cancer that had metastasized to his bones. He had a very painful death. I am going in July 3rd for robot assisted surgery. Mine is caught early.
Thank you Mark, your positive attitude has rubbed off on me! 2 months post surgery, it's fight or die, and I choose to fight!
Στα ελληνικά
Awesome positive video message Mark! You're a Highlander warrior, and I appreciate you brother. 👍
Thank you Mark. I was diagnosed in mid 2020 following a biopsy at the age of 74. The scan that was done prior to the biopsy revealed two suspicious spots in the prostate which provided guidance for the biopsy. Of the 14 samples extracted, 7 contained cancer cells but all were encapsulated within the prostate (had not spread). At about that time, I discovered your videos and have been following you ever since. Fortunately, I live in the Houston area where excellent medical expertise is available. I chose a urologist who specializes in robotic surgery of the prostate. Watchful waiting would have been an option for me but I wanted to be proactive and elected surgery (after a consultation with a PhD oncologist/radiologist to consider radiation as an option). My surgery was performed in December, 2020. Like you, I was fortunate to recover both continence and erections within six months. I am now 3.5 years post surgery and my PSA continues to be non-detectible but your experience reminds me that one can never become complaisant and I will continue regular monitoring well past the recommended 5 years. My advise to anyone newly diagnosed would be to keep a positive attitude (as Mark always has); take decisive action - if cancer cells have been found, they are not going away. If you are healthy and expect to live another 10 years, get treatment as soon as possible. Most importantly, seek out the best medical providers in the country, even if you have to travel a considerable distance. The risks are too great to entrust your care and treatment to lesser experienced providers. Thank you again Mark for the advice and guidance that you have provided for hundreds, if not thousands, of us walking the path behind you.
we're with you in this , keep up the good fight ✊
Thank you Mark, you do make a difference.
We love you Mark!
Thank you very much for your updated thoughts of this special caring for others.
Thank you so much Mark you are inspirational good luck with your treatment ❤
Fantastic video Mark, I’m currently in your position and same treatment wise. Really appreciate your videos sir! 🙏🤗
Thanks Mark I so appreciate your content and education on this journey. Keep us posted on all this. It's so inspirational. Thanks again.
You got it!
Thank you Mark. I am at the 8 year plus mark following surgery and feeling nervous about my PSA upcoming tests for a reoccurrence as you mentioned 30%. thank you for the positive inspirations as we all move forward in our prostate cancer journeys.
Well said Mark….I was diagnosed in 2019…psa 4.6…age 69….biopsy 4+3 Stage 3..extra capsular ext…did 71 grey units of…EBRT…24 months of Eligard ADT…psa .012 since… doing TRT for the last 2 yrs…long term radiation side effect..”level 1 cystitis, Had 2 rectal ablations…Now 5 yrs later…a little incontinence…no rectal problems..my testosterone is 680….I have a beautiful 53yr old Brazil g/f…..and I’m happy. btw: I took 90 days after my biopsy diagnosis..researchng my options…before doing treatment…ps: I almost died from AFIB …..2 times…2 ablations, 1 cath…..on blood thinners for 2yrs…number one side effect of ADT….I’m so glad I watched your vlog..it’s SPOT ON!
You lost me when you brought up having a girlfriend~
Thank you for the positive outlook on this , it reminds us that we need to always have a plan B, and i am finding knowledge is a powerful tool to take away the fear of dying of this , im 58 going in for LDR seed implants in the next few months , my radio oncologist never mentioned ADT options before hand and i think i will check into it to see if it gives me a better outcome , thanks again Mark , keep up the fight .
Thanks Mark, another great video.
Thanks Mark, I concur. I had prostatectomy in 2022 and it recurred in 2023 in the lymph nodes. Had a PSMA PET scan. Went on Prostap (Lupron in the Sates I think) in December 23 and now face 33 sessions of radiotherapy end of this month until early August. The Prostap I find is rather brutal, frequent hot flushes, tiredness and muscle wastage (my legs now very thin) testicles now the size of small marbles and I have to ask my wife to open jars for me, even with some muscle training. I am also still incontinent and they are talking about an AUS later on when the cancer is gone. Even so, I'd rather be alive with pads etc. than the alternative. Just keep going is your advice and I agree. Best regards and many thanks, Mark, its very helpful. Graham, U.K.
Graham, keep your chin up...and keep up the fight. Are you being treated via NHS or privately?
@@prostatecancerexperience NHS. It would costs tens of thousands to go private, even if they did it. I heard the PET Scan cost is in the thousands of pounds. Thanks for your kind interest. I will soldier on for my loved ones and the prospect of being cancer free.
Reading your comment is exactly why I don't want to start any treatment whatsoever! Once I start that's when the journey starts. Side effects from medications radiation problems prostectomy problems everything snowballs it seems! I am terrified! Thinking what to do.
If Express it will kill you yes but the hormone treatments and the radiation will kill you also it seems.
@@ricknowak4582 We must all make our own minds up. Get the best advice you can. I recommend watching PCRI on CZcams with Dr. Scholtz. The meds are awful and a couple of years on that with radiation seems the only hope of cure, which the docs seem fairly confident about. I once had a customer who was given two years to live with treatment and 9 months without, He chose without and said he wanted a normal life as long as possible and was dead in 8 months. His wife said the last couple of months were horrifiic and he just had palliative care. Brave man. I'm not brave and want the chance to live as long as possible so I'll take what I can get. If I get a cure, maybe a normal life will come back for a few years. I wish you well and hope for a good outcome for you. Once you have made a decision you may be less terrified and will work towards what ever you hope for. Good luck with whatever you decide.
Thanks mark very interesting and informative i have just finished my 4 wks of treatment see my dr in 6wks hoping for a good result. Thanks for the video keep up the good 💪💪😁🇦🇺
Work
Well said sir!
Hi Mark,
Thanks so much for this video series and all the positive reinforcement!! I watch and follow both your facebook and the video series. It truly helps me tremendously!!
I’m six months post RP surgery. My PSA was at .0036 at three months post surgery now I’m at .153 six months post surgery. I’m now taking Xtanadi and will start radiation treatment in the near future. I’m also scheduled for a PSMA Scan. It’s a fight and like you said and I’m determined to beat this!!
Thanks again Mark!!
Mitch, your PSA rise may suggest that some of the cancer has been left behind, and rather than being dormant is active. It sounds like you are on a good path, and I don't expect the PSMA scan to produce anything meaningful at this point.
I really look forward to your check ins. I’m on day 10 of orgovyx and will probably get my radiation start dates confirm this week. Should be very soon. My ADT symptoms are quite mild. A hot flash on occasion, but today I felt incredibly tired and had a two hour nap in the afternoon which is unusual for me. Otherwise I feel pretty good. I can tell that the ADT is trying to affect my mood a bit, but I find that keeping my mind busy holds it at bay. Crosswords, walks, even video games, anything to keep your mind active and not fall into a passive state of mind for too long.
I will be getting the regular non-proton treatment so I will post on how that’s going for me as well.
Your videos mean a great deal to me. Please keep them coming.
Weave, you are precisely on the right track...and I am glad to hear that your Orgovyx experience has been mostly positive. Will you plan to test ADT and Testosterone after the 4th week? You should, and this will validate that the Orgovyx is working.
You are awesome
Thank you Mark i appreciate your positive attitude I had prostate cancer stage4, 3 yrs doing Lupron injection and chemotherapy my PSA stable and adding 2nd generation Nubeqa ,stable all this time until recently 3.4 went up And pet scan shows something in the prostate need radiation for the next 6 wks hope me well and to all the people who suffer. Thank
Mike, keep up the fight. You will win this.
thank you thank you thank you, the information you are sharing whilst I appreciate you trying to keep nonpersonal suggests otherwise and this is what makes this vlog real so I thank you. The information you share about the sensitivities of the progression of this cancer is much needed and much appreciated. This has been so educational for me and I want to say thank you. I also wish your journey ahead is successful and leads to a good outcome and quality of life but rest assured you are making a difference for so many. Are there any recommendations on diet post diagnosis that ay improve outcomes...Bless
Thank you.
Hi Mark, thank you so much for sharing your experience, im about to start radio therapy in about 7 weeks, keep up the fight ❤
Dave, would you mind sharing your story? And, what lead up to radiotherapy?
So, it all came from a conversation with my partners dad. He had prostate cancer but it’s under control now, but he kept saying to me go get a psa test, I said why I don’t have any signs, he kept saying get a test anyway. So eventually I went to the GP. I explained to the doctor what my partner said, she asked if I have any symptoms I said no. She said well we don’t normally have psa test done without symptoms, but in my country we test as routine so I’ll arrange a test. Well I was convinced that the test would come back normal, how wrong was I😂 I had another test 4 weeks later and it was higher. So this started all the normal scans etc and biopsy. This confirmed it was cancer. I’m now due to have radio therapy in about 5 weeks. So my message is to all you guys regardless of if you have any signs or not get a PSA test, if your doctor refuses insist on the test, failing that have the test private. If it wasn’t for my partners dad, and a very nice doctor I would have never known until it was possible too late. Get a TEST 😊
@@daveyoung2056 Dave, are you in Canada, by chance?
@@prostatecancerexperience no I’m in the uk 🇬🇧
@@daveyoung2056 Dave, I am concerned that your GP remarked that a PSA test is not usually given without symptoms. Prostate cancer has no symptoms, it is a silent killer. All men from 40 years onwards should have an annual PSA test. If you are under the NHS, they will try to direct you to the least expensive treatments, and with prostate cancer sometimes there are bureaucrats making medical decisions (NHS). Let me ask you, what was your latest PSA, what was your Gleason score and what kind of radiation are they planning for you? Was surgery ever discussed?
This is a great video. my first treatment was high dose brachytherapy with 5 weeks follow up of external beam radiation. however three years later I had a recurrence...but still localized...meaning located within the prostate capsule. I received salvage treatment which consisted of Cryo therapy. my PSA has gone down to 0.67...but I am still monitoring my PSA after one year. That's the key...monitor, monitor, monitor. You have to treat your prostate cancer as if it is a chronic illness.
Can I ask how old you are? I sometimes doubt the effectiveness of brachytherapy especially in younger men.
What was your initial PSA and Gleason score? I am considering brachytherapy + EBRT as well and wondering if I should add ADT to improve the outcome.
@@prostatecancerexperience I'm 72 now but I received HDR brachytherapy 4 years ago.
@@Infamous_9597 My PSA was 18.7 when I first had HDR brachytherapy. but if I had to do it over I probably would have chosen HIFU as my first type of treatment.
my gleason score was 3+4 at the time of my first treatment.
Very helpful to me. Just beginning the prostate cancer journey. 75 years old and a fighter. I am getting the Divinci Robot on July 3rd in Dallar, UTSW, Dr. Gaston. I've got three tumors between 8 and 11 mm and some extra-prostatic on the bundle (MRI in March - and proven with Biopsy in June).. So I wanted the cancer removed and will see where it goes from there. MRI showed no signs of the pelvic lymph glands being involved. PSA went up from mid .2 to .5 in a 2 year period. So I am ready to let the surgeons do their job and remove the prostate. Hopeing not to have radiation, but I expect it and the pain of getting to and from the radiation treatment site. One thing your pod casters should know is the VA says PSA tests are useless after 70 and they don't do them. So don't listen to the VA doctors, they are trying to save money and cut your life short. Thanks again for your podcast.
Great information I am 75 had cancer 3 years ago .passed was doing well and it has gone from .03 to 2 in a year
Only good news I have Sloan close by.
I wonder what they will recommend next
Thanks for the video. I'm not even diagnosed yet, but just received a PSA of 54 (note, that is NOT 5.4) a cure, is not even possible. Why, oh why did we stop rectal prostate exams and PSA tests 20 years ago. My cancer should have been caught 5-8 or more years ago. Btw, the cause..... 2-4-5-T (aka Agent Orange). As a college kid in 1972 I sprayed it under power lines, and was often covered with it, mixed with kerosene that we sprayed on foliage under the power lines. Thanks, Monsanto.
Monsanto, please keep us in the loop.
Hi Mark. Wondering if you could go over what the SUV number mean on the PSMA. Is there a number or level to be concerned about? I just had mine. No findings but unsure of those level mean and how the doctor uses them.
Hi Mark
I had my prostate removed june 2023. I had muti focal positive margins. Fortunately the cancer at the margins was gleason 3+3 and less then 3mm in length. I had one tumor that was 3+4 with only 1mm being gleason 4. I’m 78 and further treatment is on hold for now. Just going to wait snd see. I was curious what the gleason score was on your positive margin.
Ive been following your videos. Theyve been very helpful and comforting.
Thanks, Howie.
Howie, my Gleason scores over 4 cores were both 6 and 7. At 78, with 3+3 and one 3+4, a wait-and-see approach may be wise. If the cancer is very slow moving, and let's say your PSA is within a certain ballpark, you may find that the cancer never really has a chance to evolve dangerously by the time you pass on...which can be many years from now. If you end up opting for treatment, a full prostatectomy may not be necessary at 78. But, listen to your doctors, and I would always visit three different ones to get consensus on where you go next.
Great information Mark! So what was your PSA # that made you want to choose to go in for more treatment and what exact treatment are you having? Also would you still recommend the Proton 5 day Radiation you had recently?
Larry, I waited until I reached 0.40, but only because it took me 3 years to get there, and about 5 years to reach 0.20. So, it's as much about timing as well as the score. Someone who reached 0.20 within, say 6-12 months of surgery may want to head into radiation sooner than later. On the other hand, it takes YEARS to see a slow rise, there is sometimes a good case to wait a bit longer.
Thank you mark
Very good video.
I was diagnosed with stage 4, bone metastasis, 71 years old, still working, had a TURP, that's when I found out with Gleason of 9. On lupron, Xtandi, and worked great for 9 months, then psa started to go up. My oncologist sent me to Detroit, 6 hours away. Dr Elizabeth Heath at karmonos cancer, Wayne State university. Have been on 3 trials, now going to start Chemotherapy for the first time. My wife developed developed multiple myeloma in August of last year, she just had a stem cell transplant . Still in the hospital, so they say God doesn't give yoi more than you can handle. I guess God is putting me to a test . And yes, I need to FIGHT! Just wanted to say, you were encouraging to me this morning. Thank You
Michael, you are a warrior, and warriors do not give up the fight. Keep that mindset, and you will survive this. You are in my prayers.
You should do a video on oligometastatic prostate cancer.
I'll need to look up what that means.
I am 87. I had radiation for prostate cancer many years ago. My PSA is at .09 one hospital just tested. The veterans hospital came up with .05 so what do I do now for my future. Doctors do not want to discuss it.
You are probably fine as you are. The PSA level isn't significant at this point.
Mark!! I usually watch your videos twice! Anyway, I just got finished watching your video 8 years ago soon after the prostatectomy about peeing. You mentioned that your doctor performed a new prostatectomy treatment. By any chance was it the.... "Retzious"?? Cause , I just found out a week ago of a urologist in Weston Florida near me at the Cleveland clinic that does the retsu's sparing surgery. Protects the pelvic floor area so incontinence is spared immensely. I am debating between proton therapy and prostectomy. In this new procedure is reformed by only a handful of doctors so I am quite excited. Please can you give me any more information Mark.
Rick, I am not familiar with that process. Can you explain it further?
@@prostatecancerexperience Mark there are three ways as I understand performing the prosectomy. The normal one and the second one is called "Anterior facial sparing" surgery (which I think maybe you had) The newest one is called the...." Retzius Sparing Prostectomy". This one they come in from... BEHIND (somehow) saving all the "important" parts. Google it. I've heard that only a handful of surgeons perform this procedure. It takes around 45 minutes more.. but has much better success controlling incontinence!
Have you tried RSO suppository?
Sir mark which is better surgery or radiation i'am prostate cancer under chemotherapy at present.
Ruben, if you are under chemotherapy, I am assuming you have advanced prostate cancer?
Mark. thank you for the positive encouragement. I had my surgery in 2013. In 2015 my surgeon told me all was good, I was cured. I kept up my 6-monthly PSA checks at my own initiative and cost. In 2022 I noticed a small uptick from 0.03 to 0.04. So I monitored closely and started chasing my medical practitioners. At 0.48 I finally managed to get some MRI scans which showed nothing. I kept pushing. Eventually I managed to have a PSMA Pet scan which showed 2 leasons in the bone. I agreed to go on to ADT. After 4 months my PSA was back down to 0.02, ie non-detectable. Now, 10 months later, it’s started to rise again. My testosterone has also gone up to 16. I go to the gym 5 times a week. Next step another PSMA Pet scan and most likely another round of ADT. I’ve been trying very hard to convince them to do spot radiation of the one remaining lesion in the pubic bone. The gloves are off, it’s now a bare knuckle fight. No one’s left behind. Thank you again for the motivation 👍
Gunter, how long did it take you to go from 0.04 to 0.48? Also, are you in the US or abroad?
@@prostatecancerexperienceit took about 18 months to go from 0.03 to 0.48. I am in the UK.
Gunter, before.03 you had different numbers,I mean smaller ones or for 9 years you have PSA .03 and then it's start rising
@@alk8933 To give you the brief history
04/13 PSA 6.1
08/13 PSA 6.25
09/13 Protastectomy, PSA down to 0.03 shortly after
09/20 PSA still 0.03, ie no change in 7 years and undetectable
03/21 PSA 0.04, first up-tick noticed
02/22 PSA 0.11 first MRI shows no indications in prostate bed, nor does second
10/22 PSA 0.25 first PSMA Pet scan shows 2 lesions in bone, T12 and pubic
03/23 PSA 0.48 PSMA Pet scan shows one lesion in pubic bone
04/23 Commence first round of ADT, Bicalutamide, followed by 3-month injection
08/23 PSA back down to 0.02, ie non-detectable
12/23 PSA 0.09 with increase of testosterone to 8 due to daily gym
06/24 PSA 0.09 or 0.9?? can't get an answer out of the system, testosterone 16
Proposed PSMA Pet scan in August, most likely followed by ADT??
If interested and easier, we can communicate directly by mail?
@@prostatecancerexperience
Mark, here is the full journey
07/13 PSA 5.99
09/13 Prostatectomy
10/13 PSA 0.03
09/20 PSA 0.03
03/21 PSA 0.04 - first up-tick, monitoring closely
02/22 PSA 0.11 - 2 MRI's show nothing in the prostate bed
10/22 PSA 0.25
11/22 first PSMA Pet scan shows 2 lesions, T12 and pubic bone
03/23 PSA 0.48
04/23 commence ADT with Bicalutamide, then 3 months injection
03/23 third PSMA Pet scan shows a single lesion in pubic bone
08/23 PSA back down to 0.02
12/23 PSA up to 0.09, but testosterone back up to 8
03/24 PSA still rising, testosterone now at 16 (daily gym sessions)
next step hopefully another PSMA Pet scan in early August
Did you change your diet after diagnosis ? I keep hearing a low animal fats/protein diet helps. Thoughts?
I don't believe that diet and prostate cancer are directly related. On the other hand, a good and healthy diet makes your body strong, and strength is what you need when fighting cancer.
My friend a whole plant based diet is the best for that problem.
PC feeds in animal fat and proteins.
Good bless@@prostatecancerexperience
@@davidpacheco750 David, prostate cancer cells feed solely on testosterone, nothing else. There is a common myth that a whole plant based diet thwarts cancer. This is simply not true, however, for some cancers lowering sugar intake does have an impact. There is currently no research that connects diet with prostate cancer, other than a healthier diet is always good for the body, and a healthy body is a strong body. Unfortunately, prostate cancer cannot be controlled by food. Believe it or not, but the anti-animal movement is motivated by money, not research. Still, we should each be free to follow whichever diet serves us best. So, I encourage people to eat well, limit processed foods and limit sugar intake. But, this will not have a direct correlation to prostate cancer, just a healthy body.
I like your video but I have no interest in prolonging my life. Where do you get this?
William, there are a variety of ways to making coping with ADT and prostate cancer tolerable. What is your specific situation?
Staying alive, but at what cost???
When the treatment side effect are so horrific and quality of life destroying, is it really worth an extra couple of months???
Rob, to answer your question...YES.