Why Quality of Life Matters |
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- Опубліковано 14 лис 2022
- In this video, PCRI's Alex and Mark Scholz, MD, discuss the concept of "quality of life" and how the overtreatment of low-grade prostate cancers inspired Dr. Scholz to co-found the PCRI. Alex also asks about what patients should know about talking with their doctors to ensure that they are receiving the optimal treatment, which sometimes means no treatment, based on their specific case, to avoid long-term side effects if possible.
0:07 Why is quality of life so important to you and the Prostate Cancer Research Institute?
2:03 How much time do patients have to make a decision about prostate cancer?
4:51 What percentage of prostate cancer patients have a Gleason 6 prostate cancer that qualifies for active surveillance?
6:13 Why are there some physicians who do not quality of life a priority when considering treatment?
7:26 How can a patient best communicate with his doctor that quality of life is important?
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Who we are:
The Prostate Cancer Research Institute (PCRI) is a 501(c)(3) not-for-profit organization that is dedicated to helping you research your treatment options. We understand that you have many questions, and we can help you find the answers that are specific to your case. All of our resources are designed by a multidisciplinary team of advocates and expert physicians, for patients. We believe that by educating yourself about the disease, you will have more productive interactions with your medical professionals and receive better individualized care. Feel free to explore our website at pcri.org or contact our free helpline with any questions that you have at pcri.org/helpline. Our Federal Tax ID # is 95-4617875 and qualifies for maximum charitable gift deductions by individual donors.
The information on the Prostate Cancer Research Institute's UA-cam channel is provided with the understanding that the Institute is not engaged in rendering medical advice or recommendation. The information provided in these videos should not replace consultations with qualified health care professionals to meet your individual medical needs.
#ProstateCancer #MarkScholzMD #PCRI
IN 2010, at age 66, I was diagnosed with prostate cancer Gleason 6. My urologist, who was also a surgeon, after giving me minimum information about my options, urged me to have immediate surgery to remove my prostate. When I asked for a couple of weeks to think it over, he exclaimed "but mister Pappa, you don't understand! I can cure you!" It was at that exact moment that I realized that this guy was just a car salesman. After I refused to be hurried, and did my own research, I decided opt for no treatment. My current urologist supports my position. My PSA has slowly doubled to 8 in 12 years . I feel great. Surely it is possible that my cancer could become aggressive, metastasised and ultimately kill me. If it does, I will not regret the path I have chosen. The last 12 years have been worth it.
Good for you for not being ramrodded into a quick and painful decision. 22 years ago I was diagnosed prostate cancer PSA 37.5. Gleason 4+3. I was 48. He told me I would be dead in 2 years if I didn't have it out immediately. 2 weeks later he butchered me. I'm still here but endured hell. My life was never the same. Quality of life means everything to me. I live with regret every day.
Same basic experience as you. When I was diagnosed in 1999, the urologist was ready to have me on the table the following week. Everyone including my family doctor was pushing me for immediate treatment. I just didn’t feel comfortable and put everything on ice.
Then almost 20 years followed where I kept feeling perfectly fine and didn’t even do watchful waiting. Not even a PSA test for 15 years. I didn’t even have a family doctor from 2010 until 2020. Then I luckily found one, and the first thing was a DRE that was negative. Then my fist PSA in 15 years, and it had increased from 10 back in 2005 to 37, as well as a biopsy showing one core with 4+3 , others with 3+4, so now I did think I was treatment ready. But no surgery, I opted for a 6 month course of Eligard and 5 treatments of SRT. Now after 1 year and 2 months PSA is holding at 0.2 and side effects were minimal.
Not everyone can or would do what I did, but unless you have some form of extremely aggressive prostate cancer which is really only a very low percentage of men; the worst thing you can do is to rush into treatment, which often is not that necessary and can advance quickly a low quality of life.
@@Ponyexpress1861Thanks for sharing. My SPA has gone from 1.7 - 5.4 over 6 years. MRI and biopsy 3+4=7, pattern 4, less than 10%, Grade Group 2, PiPRADS4 (but the local images said PiRADS5, Mayo Clinic said 4). 10 out of 15 biopsy’s where GG 1, 3+3=7 PiRAD3. What I cannot get answered is how fast is it growing. Mayo (the one doctor I’ve talked to) said they would not do ablation therapy at my stage - “Favorable Intermediate” though I see other clinics and study say ablation can be do for favorable intermediate. All this information and it’s like you can’t get an answer.
Has the cancer progressed since you initial diagnosis. Higher grade or more volume. In similar situation and researching to decide.
@@marka9073 3 years ago I had a fusion biopsy to check the status of my cancer. It has gone from 1 cm to 1.4 cm in size. It was also upgraded to Gleason 4+3 (from 3+3). In the last 3 years, my PSA has gone from 3.17 to 3.48 (these are numbers while taking Finasteride, which has the effect of halving PSA). Nothing has changed in the way I feel. I have no symptoms other than possibly my nocturia being a bit worse.
You are doing such a profound service. Many of us have been pushed into radical treatment unnecessarily. I have had some extremely tense and hostile interactions with urologists. Thank you for providing good information based on science and compassion.
Closing statement by Alex was excellent and says it absolutely all. The doctors are only workers in the line of duty, the quality of life issues is the sole responsibility of the individual (patient). They are the only ones that will actually be living their lives.
Best video on PC I ever saw and I’ve been watching them for months
WATCH this PCRI video FIRST.....terrific video by Alex & Dr. S.. a realistic perspective about PCa decisions and avoiding the scare talk. Watched dozens of PCRI videos, this is best video 4 beginners. My clinical course ....consulted 3 URO MDs...MRI/Biopsy at a University Med CTR, chat with PCRI, PCRI staging quiz, seed radiotherapy.
I was diagnosed with prostate cancer in June 2022, ( 61 age) the first thing my Urologist said to me was you have prostate cancer have about 10 years of life, my PSA is 8.3 my Gleason score is 6, no treatment at this time ever 6 month test my PSA, my biopsy said my cancer is so small , I"M a postive thinker , I'm going to reverse lt!
Thanks for sharing. (61 age) My SPA has gone from 1.7 - 5.4 over 6 years. MRI and biopsy 3+4=7, pattern 4, less than 10%, Grade Group 2, PiPRADS4 (but the local images said PiRADS5. 10 out of 15 biopsy’s where GG 1, 3+3=7 PiRAD3. 1 of 6 brothers has had PC. What I cannot get answered is how fast is it growing. Mayo (the one doctor I’ve talked to) said they would not do ablation therapy at my stage - “Favorable Intermediate” though I see other clinics and study’s say ablation can be done for favorable intermediate. All this information and it’s like you can’t get an answer. Any suggestions.
Like your thinking, stay positive.
What are you doing to reverse the PC?
@@marka9073 green tea, vitamins minerals, beans, vegetables, cut out any processed foods and drinks! think positive! l avoid fats foods milk, dairy, what are you doing? ps lost 32 lbs because of diet change
@@CORRUPTIONCZARNETWORK lost 25lbs before I was diagnosed, by changing diet after retiring 3 yrs ago. I was never very much over weight. So thin now.
My diet is same items you mentioned. Rarely red meat. Protein consists of Salmon, some chicken breast, legumes, walnuts, pecans. Tons of vegetables(and garden), salads and fruit. Eat mostly whole food, very little processed. Drink green tea, but need to increase consumption. Morning coffee, plenty of water, very little soda. Have few alcoholic beverages.
Being more careful with egg consumption, as I've been told PC likes the choline in the eggs.
Treat myself with limited dark chocolate, rarely a scoop of ice cream.
Not aware of anyone whose reversed it, but figure I can try to slow progression.
This is what I needed to watch after having radiation and hormone treatments.👍🏽 Thank you PCRI.
Wonderful advise on the Quality of Life issue. All the grades & gleason scores, compounded by all the treatment options, compounded by personal health status AND all the varied side effect variables leaves an infinite cause and effect quagmire. Personally, at 65, my PSA went from 7.3 to 11.9 in six months, MRI targeted biopsy showed Gleason 8, and grade 3b. I chose 9 weeks of IMRT and 28 months of Lupron that left me a shell of my pre-diagnosis self with an 85% reduction of energy/motivation documentable on my fitness tracker. BMI increased from 27 to 33 in one year, When I talked with my Radiation Oncologist about this **crushing** decline of energy, his response was...(and I quote) "You're NOT Superman!". (note to self; Lupron = Kryptonite) He deferred my Q of L issues to my PCP who said that it's a two year sacrifice to gain (hopefully) 15+ years of life. I often wonder if I'm a cancer survivor, or a cancer TREATMENT survivor! ? ! ? ! Diet and exercise choices exponentially effect your body during treatment, and choosing wisely can make all the difference in battling side effects. BUT the battle is COMPLETELY personal, and no doctor will hold your hand (in my experience). SOLDIER ON P C warriors!
Thanks for sharing your story. I’ve been watching these UA-cam channels on PC since June 24th. I’ve never seen a single doctor or man afflicted ask about mental health. What if your already prone to depression. Is all PC therapy okay as long as the PSA is under 0.1. I find there is little effort to look at the total person and what they can handle.
@@MM-sf3rl yes, unfortunately oncologists focus solely on the cancer, and defer side effects either to their pharmaceutical toolkit, or your PCP. Nutrition and mental health seem to be considered the patient's responsibility.......
I am 72 diagnosed 2 years ago. Psa of 22, I chose lupron and radiation. I stopped lupron after 4 shots over a 12 month period. The side effects of lupron were too harsh for me. Last psa test shows less than .3. Some side effects still there. I should have asked more questions, but if it come back, I am not having any treatment. I lost too much quality of life these past 2 years. If you are prescribed lupron or any hormone replacement treatment, ASK about the side effects before you agree to proceed
PSA less than .3. That’s good! Maybe rebuild yr strength and then check your levels or get a new scan. Then decide what to do
I would have to disagree with you comparing Prostate cancer to the "un-cola" of cancer. It should be taken seriously but the patient should also be provided the appropriate perspective and context of their individual diagnosis. I have stage 4 metastatic Prostate cancer at age 50. The cancerous lymph nodes they removed out of my neck, bone lesions and dozen or more swollen lymph nodes in my abdomen, chest, pelvis and thigh are cancer. It is a dangerous path to go down to not consider Prostate a "cancer" whether it's stage 1, 2, 3 or 4. I wish I would have caught my cancer at stage 1. Remember you are speaking to men who typically avoid going to see a physician. By downplaying it's severity and impacts is green-lighting that tranditional male behavior of not going to the physician for minor symptoms therefore missing diagnosis that could be 100% treatable.
Your videos have been so much help for me going thru this journey of metastatic prostate cancer. Thank you so much and keep up the good work.
Thx Alex. You and Doc Scholz are super stars. Was diagnosed 3 years ago with metastatic prostate cancer. PSA of 587 and Gleason score 10. Am from South Africa and have been following your videos since the beginning and have found the info enormously beneficial. Thank you SO SO much. 🤗
Still your soul on earth?
Very much so. And thriving. Thx for asking
How are you doing? My husband just got diagnosed with G 9
@@sonalivarma3487 Gleason score doesn't mean much IF it's contained to the prostate.
I was diagnosed stage 4 Gleason 10 just under a year ago…I took the Uroligist and oncologists advice thinking time is important. Was recommended down the Chemo route. Now after 18 weeks chemo my PSA at end of chemo was 29 , 8 weeks later my PSA had risen to 370, now heading back down around 55 with a combination of traditional meds and alternative treatments. My quality of life the last 10 months has been well below par and still struggling with fatigue. I made the mistake of trusting the doctors and at that time its a common scenario if you have no medical background to go with expert opinion. Yes quality of life was not discussed only treatments to attack the cancer!
Great information. Wish I had had this back in 2018. I would have made vastly different decisions. Glad others have more options.
Thank you!! Your videos have been invaluable to me in my journey. I was on AS for 11 years with a Center of Excellence team of doctors who recommended cutting or burning to treat my Favorable Intermediate grade cancer. Based on my own desire to focus on quality of life I had a HIFU procedure done by a very experienced doctor. One year later I am happy with my results and my decision and I have new team of doctors supporting me in the next step of my journey.
Thanks for sharing. My SPA has gone from 1.7 - 5.4 over 6 years. 10/31/22 MRI and biopsy 3+4=7, pattern 4, less than 10%, Grade Group 2, PiPRADS4. 10 out of 15 biopsy’s where GG 1, 3+3=7 PiRAD3. 1 of 6 brothers has had PC, all over 55-70 yrs old. What I cannot get answered is how fast is it growing (can I do active surveillance for 2-4 yrs). Mayo (the one doctor I’ve talked to) said they would not do ablation therapy at my stage - “Favorable Intermediate” though I see other clinics and study’s say ablation can be do for favorable intermediate. All this information and it’s like you can’t get an answer. Any comments?
@@MM-sf3rl Have you requested a genomic test which will tell you your future risk? Although I was also Favorable Intermediate, a major catalyst for taking action was the High Risk grade I received on my Decipher test. Also, I suggest you speak to more doctors who specialize in a partial ablation procedure. I consulted with three doctors and focused on Tulsa Pro and HIFU.
Searching for HIFU info. Where did you have yours done? TulsaPro or HIFU? Any info you can share is welcome.
@@stonebridge3908 thank your feedback. I talked with the oncologist at Mayo clinic. My PC doctor surgeon at Mayo said I was not a candidate. However, the oncologist said we should talk to the guy who does the ablation therapy. Makes sense, right? The oncologist talked about Mayo doing cryotherapy. I’ve also seen this done at Duke University. As always, more research.
@@marka9073 I have not done anything yet. I’m going to have a consult in February at Mayo clinic for Cryo therapy. At least that’s what the oncologist thought they do at Mayo.
Thanks you folks are appreciated!
You folks are very much appreciated! Thank you!
Thank you it’s very informative
Excellent 👍
Excellent information as always. Thank you both!!
Thank you for sharing your knowledge. I find your videos very helpful.
great content !
Excellent video.
Very clear as to how one can deal with their cancer.
Thank You.
5*****.
Thank you for your insight and experience, I’ve gained so much helpful information from this platform. God Bless
Me personally, I lost my Dad of pancreatic, than Mom of Lung, than my Biopsy showed cancer, 3+4, 7 of 12 regions
Urologist told me to educate my decision,
I chose to do surgery after talking to others and researching Mayo Clinic
I had a MRI day before surgery, pathology came back mirroring Biopsy
Mind you, Seminole Vesicle came back Absent in MRI
Had surgery next day
Dr called with Pathology report, stated cancer had move some into seminal vesicle
He felt he did get it all in surgery
My question: How would have I known if I hadn’t done surgery
Active surveillance would have left the door open to spread?
As always great information and wise words, your videos have helped me from at first feeling suicidal on being diagnosed to being quite relaxed about my small low grade cancer! You can never know how appreciated you guys are to me! Thank you so very much!
We love you Roger. Thank you for sharing - Alex
Alex is an Angel~
Excellent video, well produced. The doctor mentioned "high grade cancer." What does that mean and how is it determined? Secondly, there is repeated reference to support groups. Living in metro NYC I have not been able to locate any support groups and specifically support groups for gay men with PC. I think that PC is a different thing for gay men and everything seems to be focused on heteronormative male. Is there a directory of support groups for men with PC?
My Gleason score was 4+3 and 4+4 13 core out of 18 was 100% .
I wish I could hear more about alternative treatments, instead of how Eligard was forced upon me without my consent and without being informed about the horrific side effects. I have refused any further injections after the six month shot of Eligard expired. Three months later, I am still chemically castrated, sometimes that I was never warned about.
Life choices are rarely black or white, but many shades of Grey in between.
Can you do a video on alternatives, such as Bicaludamide monotherapy, Orguvyx, etc, or just 2 or 3 months of Leuoprolide????
Patients desperately need factual information and FULL DISCLOSURE about serious and deadly side effects in order to make the best decisions for their life.
Big pharma sales propaganda is NOT HELPFUL
How about undetectable PSA?
You should ask Dr. Scholz to comment on doubling rule when a patient has taken Finasteride for one year prior to diagnosis. I have had BPH for many years, untreated. In the last wo years at age 75 my GP prescribed Finastride to shrink prostate. My PSA slowly rose thru the last decade to 10 with BPH. Now that I have a nodule found with DRE, urologist says my PSA is really 20. Makes no sense to a non medical person that has a total and free PSA test every six months. How can real blood tests be wrong ?
Can i take a Testesterone Booster after having finished my Radiation Treatment snd hormone implants please.?
Can I stop HRT after radiation therapy because my PSA fallen from 49.8 to 0.48 I have been on HRT last 5 months and starting radio therapy next weak thank you
Hello, we have a helpline with patient advocates that can provide you with information about your case. You can find our contact information at pcri.org/helpline.
Hormone therapy usually causes prostate cancer regression, and thus a person on hormone therapy should have a very low PSA (unless they have advanced, hormone-resistant disease) and in most cases, the cancer and PSA will return once testosterone returns, unless some other action, for example, radiation, is performed to destroy the cancer. Generally, the optimal period of hormone therapy for high-risk prostate cancer is 18 months, but there are a lot of variations depending on a patient's specific situation, and so the decision is between you and your doctor, but if you are interested in literature that you can use to discuss with your physician, feel free to contact us.
I really think that the quality of death needs to be covered as well. I do not see the point of consuming resources that might be better spent elsewhere. No one is convincing me that choosing to live is thr way to go. Why shouldnt I choose to die?
There is no good quality of life associated with this disease
I have a PSA 37.7 and my biopsy results is 4+3=7 and I belong to group 3 of Gleason, the urologist told me to remove my two eggs because this is the one to supply food to cancer, this is right
I had it done and am on Abiraterone acetate tablets 4, a day.my psa came down from 168 to 0.5 I'm 3months.it is one year my psa is between 0.3 to 0.4.have a few metases in the spine and pelvic bone.exercise is important to keep the energy levels up.u am 75 years old and sex is the last thing in my mind now.my only concern is how long will I live
It seems to me, that any man over the age of 80 is likely to have prostate cancer.
Probably the same for 77 year olds.
Given that, one can assume almost every male over 77 has prostate cancer and is living with it.
Probably most are oblivious to the fact and just get on with their life.
If every male, (younger and older), were to get treatment, obviously the NHS would be overwhelmed.
As it is, it appears that younger men who are working today, have private health care because their employers provide this. ( I worked for an American Company when I was in my 50's and the first thing that they provided was health care and I was invited for a health screen/test wherebys they picked up the PSA at 5.96)....That was way back in 2007.
16 years later I am retired and went to a doctor because I was going three times a night to the toilet....
My PSA was 10.9.....Got an MRI...found something in the prostate....Got a biopsey and turned out, it was Gleeson 4/3.
Followed up with a bone scan...Will get the results in a couple of weeks and dsicuss with specialist in Aberdeen, Scotland....
So I would think that many of working men are being screened for cancer and are possibly being treated in their 50s and sixties....probably the same throughout the UK...Private Companies...Private Heath Care.....Find high PSA levels.....Find Cancer...Get treated by the NHS or by private treatments.
This is a huge enterprise obviously.
Now back to the older generation.....
Most men over 70, probably don't know that they have prostate cancer, until of course it exhibits itself in some nasty form and then it probably is too late and/or they pass naturally with old age or some other ailment.
But I guess almost every man over the age of 77 will not die of prostate cancer treated or not treated?
So you see where I am going with this......
Why get the treatment at all, if I am most likely to die of old age or other ailments like heart disease and where the cost of treatment will most certainly outweigh the benefits and I should just let nature take it's course, as it has for generations before.
Lets face it, not many men will reach the age of 90....For me that is only 13/14 years away.
Should I suffer the consequences of the Radiation and Hormone treatments during the last few years of my life.?
Four years too late for me
PSA was 8.9 Gleason 6/6 and 4/3 PLEASE encourage all friends to get checked. I'm 62. The urologist suggested radical surgery happy I didn't. Just finished seeds 3 months now? Thank you for your insights. So glad I went with Brachy. PAX (Peace) and have a great Holiday!
Thanks for sharing. Age 61. My SPA has gone from 1.7 - 5.4 over 6 years. MRI and biopsy 3+4=7, pattern 4, less than 10%, Grade Group 2, PiPRAD4. 10 out of 15 biopsy’s where GG 1, 3+3=6 PiRAD3. 1 of 6 brothers has had PC. What I cannot get answered is how fast is it growing. Mayo (the one doctor I’ve talked to) said they would not do ablation therapy at my stage - “Favorable Intermediate” though I see other clinics and study’s say ablation can be done for favorable intermediate. All this information and it’s like you can’t get an answer. I to think LDR seeds or HDR are a better choice. Some of the outcome sound worse than the cancer. Any suggestions.
Exploring my options. Did you have the Permanent seeds or HDR Brachy. Where did you have this done and doctor?
@@marka9073 I’ve not had anything done yet; I think I will it sometime, but I sure would like to know how long I could wait. Probably not possible. I had my biopsy done at Mayo clinic. The surgeon said I need therapy and was not a candidate for ablation therapy. The oncologist said maybe I am because the cancer is only on the left side. He thought they do cryotherapy at Mayo clinic. I’ve also seen that Duke university does cryotherapy. I’m honestly not sure what’s worse - the cancer or the treatment.
Was hoping that Vic Royer would reply with info
@@MM-sf3rl Agree trying to make that decision and monitoring closely small volume of 3+4