I was diagnosed with stage 4 in august 2022. Original PSA was 38. Gleason 4+5. 12 cores out of 13 cancerous. Mets to distant lymph nodes. I had RARP within 3 weeks of diagnosis. Oncologist put me on permanent hormone therapy (Zoladex). I told my oncologist that I wanted to hit this cancer with a sledge hammer so he agreed to put me on aggressive treatment plan. I completed chemo (taxotere 6 x) in Jan 2023 and just completed 25 sessions of targetted radiation therapy on my cancerous lymph nodes. Latest PSA 6 weeks after radiation is
Thank you for sharing your story. My PSA was 26.5 Gleason score of 9 and all 12 cores had cancer in them. After RP they removed 9 local lymph nodes and found 4 of them with cancer. 3 months after RP the doctor ordered a PSA and it came back as being 21.6 instead of zero and so he finally puts on apalutamide and zoladex. With a PSMA Petscan that I paid for out of pocket, they saw metastasis in the lymph nodes in the abdominal and retroperineal area and also some early metastasis to the bones. Too bad the followup was not done sooner and hormone therapy given sooner. Now, I want chemo and radiation to force a curative outcome rather than a palliative outcome.
I have been fortunate to have Dr Kwon treating my stage 4 prostate cancer. After about a year and a half I have had 2 scans that are clear. Thanks Mayo and Dr Kwon.😀
Search for care else where. Do your homework and you have to be your own advocate. I have had 44 radiation treatments Lupron shots every 6 months. I highly recommend Dr Kwon and Mayo. Good luck.
Dr. Kwon is my spirit animal. He inspired me to fly to UCLA for. PSMA Gallium 68 scan. Four spots were found. I’m scheduled for SBRT at PSA 0.85. I hope for a cure.
I had a similar story. Decided on a GA68 PSMA PET at UCLA 3 months after Tulsa Pro. PET detected seminal vesicles involvement. My PSA dropped to 0.3 after Tulsa Pro. I did ViewRay SBRT without complications. PSA is now 0.024.
@@mperloe recently diagnosed @ 63 yrs old with small volume, 2 cores 3+4, 2 cores 3+3. Pattern 4 10%. definitely need to become knowledgeable to advocate for yourself. Would you choose TulsaPro if you had to do it over again? Was the whole prostate treated or just some lesions? What was the extent of cancer? Age, ect.
And a huge hug if appreciation to Alex at PCRI for clipping and posting on utube so many video pertaining to specific patient questions regarding their stage, outcomes, etc.,etc. THAT is a paradigm shift in communication🙏
At 21:24 Dr. Kwon talks about the logic behind what he calls "deluxe treatment". ***The goal should be to attain a curative, vs. palliative, outcome.*** This is **really significant** because many physicians (such as mine) are really focused on palliative therapy only, even for low volume disease! "Up until recently, the focus of treating recurrent prostate cancer was palliation - let the cancer get bad, treat it with something, let it get bad {again}, treat it with something, etc. Use different agents until you lose control and then the patient dies." (i.e., sequential/palliative therapy). "I like this kind of situation where you see the disease and then you go very aggressive in terms of managing the disease to the point you hope you can knock it out. We usually use a mixture of approaches and treatments to try to force that outcome. I call this curative therapy strategy."
Dr Kwon, thank you very much for these videos and your expertise. My father (age 65 then) had what was then called type 4 prostate cancer in 1975 (thought to be there for about 4 years before showing symptoms, which was a fall in the garden from pressure on spine from mets in spine) and was put on stilboestrol 1mg per day post a large initial hospital injection series with same. He lived until March 1991 though doctors said he would never walk again because of secondaries in his spine and would only live six months. The stilboestral caused a heart attack 5 years into treatment but he was treated for this and got over it and drove up to 1 year before death. He would have driven to the end but me and mother said no, no its ok we will drive lol. I am his son now 70 years old and no cancer but always watching. Thanks again Andrew.
I am a 67 year old male and I was diagnosed in March of 2022 with a MRI and biopsy that resulted in 11 of 12 cores positive mostly Gleason 6 and 7 but one Gleason 8 (4+4) and one Gleason 9 (4+5) both high percentage of core 80 percent. Had the whole body bone and pelvis scan which showed no metastasis, but I kept pressing for a PSMA Pet Scan which one year ago wasn’t easy to get but my urologist thankfully agreed to ask Medicare and it was approved. The PSMA came back negative so no signs of spread on PSMA Pet Scan. My PSA never went above 10, I believe 9.5 was the highest it ever got so a slight positive I would think, but I do have high Gleason score disease. June 1st of 2022 I started Orgorvyx and had definitive Proton therapy for nine weeks (including the Seminal Vesicle and lymph nodes) then started Abiraterone mid September 2022. So I think I am one of the earliest patients to get a PSMA Pet Scan and I am now one year of ADT with Orgorvyx in June and September will be one year Abiraterone. I know the protocols have not been worked out yet for people with High Risk Disease and a clear PSMA Pet Scan. My thoughts are that I would like to discuss the possibility of stopping the ADT early. My Radiologist has said 1 to 2 years of ADT is sufficient, my oncologist has said 2 years. I consider myself lucky to be getting good care and some of the latest treatments available. I promised myself I would give everything I got to cure the cancer but would not risk ruining my health with the ADT treatments as quality of life is very important to me. I am definitely following the advise about exercise, exercise, exercise and don’t want to do long lasting damage my body for a cure. I now have low grade anemia and osteopenia from the treatment. So my PSA has been undetectable and I also have Natera ( Signatera) Genetic Residual disease testing done every 3 months which also comes back negative for any signs of disease. I feel that I am reaching the point where the cumulative effects of the ADT are becoming a big risk to my long term health and I am considering stopping the ADT at the end of August which will give me 15 months on Orgorvyx and 12 months on Abiraterone. I am presenting my case for a review and to open a discussion on shared decision making as I am struggling with my choices on whether to stop the ADT and need all the information I can get to make my decision. Thank you so much for your consideration. I would like to have my situation presented as a question in a future video if possible.
@@SeptimusBrope Me too I am new at this as I have a PSMA PET SCAN scheduled soon and also a visit with a Radiologist. I’ve been watching loads of videos but what they’ve done is confuse the heck out of me. So much to hormone therapy that seem to have many side effects so I might go for the surgery but praying this crap didn’t spread. I’m just turning 68 and was confirmed in August I have PC after my biopsy. I’m still in shock but gotta face this and the war I’m going to have to fight for the rest of my life. This is freaking horrible. I’m praying for all of us men who are dealing with this.
Thanks for these videos. Your information allowed me to advocate for an aggressive approach in treating my recurrent cancer (which the doctor agreed to, but was not in his original plan).
Having prostatectomy in a few weeks in the NE, if that doesn't take care of everything I will travel across this country to see Dr. Kwon, who wouldn't want some one guiding them to fight this scurge from a total War footing. I'm very impressed by his approach.
I really found both these videos valuable but I do have one criticism. This is the continued position that radioligand therapy (Lutetium and Actinium) and PSMA PET are new technologies being developed in the United States. As a colleague and friend, who is also a urologist and prostate cancer researcher, has stressed to me from the point of my diagnosis in 2018 we are 7-20+ years behind various countries on PET imaging modalities for prostate cancer and radioligand therapy. It is time that these methodologies start being presented earlier to patients and if that can not be done here because of regulatory issues than there needs to be a lobby to get patients to countries where these methodologies can be applied. Along with this we should lobby insurers and CMS to pay for overseas treatment and imaging.
In the US the approach is ready, shot, aim. I suspect that many of the failures after treatment may be failure to detect the full extent of the disease. Dr. Kwon, should we be moving away from Choline and Axumin scans with far more sensitive Pylarify scans becoming available?
@@mperloe Agree probably most patients are probably just imaged with CT and Bone Scan for initial staging. Anything more is based on availability which is often dictated by the organization running the local health care/hospital. The more rural you are the less likely PET imaging will even be mentioned let alone types of PET imaging.
@@stevenpeterson659 It's time for guys to realize that the advice they receive may be limited by the doctors specialty or the hospital system. It is each person's responsibility to educate themselves and get multiple opinions.
I have 2 recurrence of Prostate Cancer. First time was in the prostate bed. 2nd time is in a soft tissue area in the pelvis confirmed by a biopsy. I had a Radical Prostatectomy and radiation before. Now I’m have radiation again along with the hormonal therapy Orgovyx. Been dealing with this On/off again for 13 years. Yet the journey continues
Thank you Doctor Kwon, great presentation, very informative. I have recurrance eight years after the 40 days of radiation. Now taking a better look at my options. However it has been like Abbot & Costello's who's on first! Who has the answer for the next treatment but the 3rd baseman has a different and and so does the pitcher. so far I have been told (by a Dr. at Mayo Jacksonville ) only option is Hormone. of cource she is a medical oncologist. another Dr. at a different facility tell me that SBRT (cyberknife) is the answer. Of cource he is a radiation oncologist. I'm still searching for the Consumer Reports of prostrate cancer treatment. Your info very helpfull.
I firmly believe in Dr Kwon's methods as presented here. QUESTION PLEASE: Dr. Kwon, I live in Phoenix - who would you recommend that I see here for prostate cancer recurrence 17 years after my radical robotic prostatectomy?
Do you use/recommend lifestyle or nutritional changes for patients? I had 23 IMRT sessions with 2 follow up HDR Brachy boosts while on 3 months of ADT. My present PSA is 0.130 which is all good and well...but I immediately transtioned to a whole food plant-based lifestyle. Why should/would I feed prostate cancer when I could starve it? No more animal meat, no dairy, no poultry or fish. Our medical practice is all ''reactive" and gives little or no thought to preventive measures
Dr. Charles “Snuffy” Myers retired about five years ago (and would speak at PCRI annual conferences)wrote a prostate cancer diet book with his daughter. I so wish that book was updated. But the idea was to keep your prostate cancer in a durable remission. And exactly as you posted not to feed the cancer with your diet but rather to starve it with your diet. In addition he also proposed that treating prostate cancer with multiple agents would result in better outcomes, as was the case with other cancers. At the same time, he was always concerned about minimizing side effects through an aggravate of approach’s too. I’m very glad that Dr Kwon has picked up the baton.
Great video, Im in the process of finding out if my Prostate cancer has spread outside the Prostate after radiation. PSA dropped from a pre radiation of 14.1 to a low of 0.19 maybe 2 months later. But within within a 3 months span PSA skyrocketed to 4.25. When I spoke with the radiation therapist when my PSA was 3.01, he stated.that I was fine and it was still under the range. I tried to point out to him I was very concerned in which the speed it had gotten that high. He just made me an appointment with him 6 months down the line. I've have since got in touch with my urologist and he sent me to get a pelvic scan and skeleton imaging scan.Plus he scheduled a meeting with an oncologist. The pelvic scan showed nothing unusual but niw I know that doesn't mean anything. But my oncologist canceled the skeleton imaging appointment and scheduled a PET scan. 3 years ago when I started this journey, PMSA wasn't available for me. I was thinking this rise, rapid rise in ny PSA was just a bump/bounce and it will start to go down again but it has not been a year yet since my last radiation session. So Im trying to play chess and not checkers. I played chess when I was first diagnosed, didn't do enough research 😮.
Our doc said PET won’t show anything because PSA isn’t at .2 yet PSA has doubled every 90 days since radical prostatectomy. They are suggesting radiation yet how do they know where to radiate?
Yes. There is a classic dilemma regarding rising PSA and no way to pinpoint the cancer’s location (until it hits a certain level and PSMA might spot it). The difficulty is that we know hitting the cancer early is best practice. Soooo, docs may guess the reoccurrence location (assuming just one) is in the Prostate bed and hit that with radiation. If that is combined with ADT the PSA may reverse course. Perhaps due to hitting the cancer or perhaps due to palliative ADT.
Awesome! I am thankful for all of the great work that is happening at Mayo. I see my Doctor in a few weeks, shout out to Dr Choo! Praying that my God ✝️ will continue to reveal the secrets of the human body/genome to finally cure cancer once and for all. Crisper, Intella, Beam, AI Technology, etc.
Great video Dr. Kwan: if I have recurrence, I'm booking an appointment with you. Three years ago, I was diagnosed with PSA 29, GL(3+4), t3bN1M0 +SV. After HDR-BT/IMRT/18moADT, my PSA this year has averaged 0.04 and T:700. Keep up the good work!
Thank you Dr. Kwon and PCRI. I have a question: I just completed 28 radiation treatments on Oct 20 with the Halcyon Varian proton device at Kaiser Permanente in Ontario along with two Lupron injections every three months. My Oncologist recommends Lupron injections every three months for two years. My blood test revealed that my PSA is less than 0.1. If my PSA does not rise above 0.1, do you still recommend all three periodic PSA, MRI, and PET scans for life? Thanks!!
Hello, Dr. Scholz has said that it is possible to do surgery after radiation, but he does not consider it ideal since there are other options with better side effect profiles, for example, cryotherapy, laser, HI-FU, etc. ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-XeCfJ885PvE.html
Is it recommended that a PET scan be done at the time of initial treatment(surgery, XRT, focal) for every prostate cancer regardless of grade or Gleason score?
No I don't its a case of tissue being left not removed, I think that was a criminal surgeon. I knew of a surgeon who had the very best outcomes from prostate cancer patients surgeries. How you ask, it was because he removed prostates from men THAT DID NOT HAVE CANCER IN THE PROSTATE. He was a fraud!
@@andrewsmith-jf6ou I had an aunt who went in to have her gallbladder removed. Years later a different surgery. Dr. says ‘I thought you said your gallbladder was removed. Well, it’s still there.’
If the PET scan comes back with cancer cells in other places besides the pelvic then we do not have radiation. Is this true? I think I understood ---NO radiation if cancer is anywhere else besides the pelvic area
So, no mention of diffuse metastatic prostate cancer. Is one beyond hope at that point? Nodal metastatic disease from my neck to lower abdomen. Multiple nodes found in each area.
Had psa of 12.2 in 2020 prostatectomy was done psa started rising again had 38 rounds of radiation. Psa is on rise again last psa was 0.14 oncologist had me do PSMA petscan came back negative now urologist wants me to start eligard and zytiga I am so confused right now one doctor says I am good other is saying put the fire out before it gets bad. I am only 55.
Could you possibly get a second opinion on the PSMA Pet Scan? Another set of skilled eyes couldn’t hurt, and may catch something missed the first time.
69 G4+3, PSA 3.99 initially treated with Tulsa Pro for an isolated PIRADS 4 lesion. Post Tulsa PSA dropped to 0.3. GA68 PSMA PET at 3 months post showed SVI on the left. PSA 0.024 after ViewRay SBRT. Should follow-up PET be obtained regardless of PSA? If so, at what intervals?
First step is a punch biopsy which liberates tumor cells to circulate outside the prostate and avoid initial treatment. This guarantees long term profits for medical providers.
I have a question about Pet scans, but first I’ll tell you my history. I had robotic surgery to remove my prostate in October 2020. First PSA two months post surgery was .002. PSA was done every 2-3 months. My last PSA was November 2021 and is .now .26. My urologist has sent me to an RO for an Axumin pet scan then salvage radiation. My meeting is this Friday with the RO. From all my reading I would like to get thePSMA pet scan. Would like your opinion on this.
Ed here, been thru surgery,radiation,lupron. praying for you and me to Christ-one only trueGod! why does this happen to us? is this cancer because of sexual sin in my past? viruses? living every day as my last, having a blast in truly a praising, ainging church
This is not intended as a negative comment, its a factual comment however you may cause to sensor free speech if you wish to do so. My point is simply, to suggest to a man or woman that cancers of the sexual organs can be cured or treated using the methods described is misleading and so also incorrect. All treatment you've spoken about have massive sexual side effects, in effect Neutering the men and women to the point of leaving them in a state of hormon deficiency and inducing Asexaulity living, with horrible side effects. These therapies or treatment are not a cure or treatment for these sexual cancers when the results leave you with sexual side effects. While your intentions are genuine and treatment offered may extend life by a fiew years, you should also advise people that they will have horrible sexual side effects, and using the words hormone therapy to treat men and women is only a polite way in saying Castration therapy. We all know the harm and damage low hormones causes to the brain and body, this is well documented as seen in menopausal wemen or men with testicular failure. For ballance and honesty you should also go into these horrible issues that patients will be forced to live with during and after treatment, and no amounts of toxic antidepressants can cure. Good presentation otherwise, Regards MB
If the choice is between being alive - seeing your child graduate, walking her down the aisle, traveling with your spouse - or having sex, I feel sorry for you that you’d pick death. Btw, after your cancer grows out of control, you won’t be having sex anyway!