Ok here's my first post, been battling my cancer for two years now since my biopsy which gave me a Gleason 9 with a psa of 11. Six years prior to that my psa was 6 and pm dr. Said I should get this checked though he was more concerned about my cholesterol and getting me on a clinical trial for Repatha, which I never used and still have it in my refrigerator! Started a strict vegan diet, a little wine with dinner!, cannibus oil suppositories I made myself, after two months my psa went from a 25 to 17. So I figured this seemed to be working, I was in great shape, rode my bike 30 miles a week, lifted free weights. Kept monitoring my psa it was stable at 23 for a year, high but stable, then after about six months later it went up to 30, than it doubled so knew from research that when the psa rises quick or doubles that a a red flag. I know a lot of you are thinking I'm crazy, but it's my battle, my life, my body. And just for a little back up to when I had my biopsy done, it was a two hour train ride to NYC to a highly reputable Dr. He wanted to remove my prostate and I did not, one of my bad cores was at the base of the prostate, when there's is cancer there, it is already most likely still there after the prostate is removed, research I did on my own, all of my research has been on my own and through a friend who works in a hospital out of state who I would send copies of my discs and reports to who had Drs. For friends in that field for an unbia$ed opinion. You see after I had my biopsy done my consultation a week later really discouraged me from going back to Gotham , I took the train up, spent $100 on a cab to the office I was to revive my report, diagnosis, I knew nothing at this time, got there exactly on time, that's why I spent the $100 cab for, then had to sit in a room with about 100 people for two hours till I had my name called, go into this room and there was a nurse or Assistant sitting there and tells me wish I had better news for you but you have two bad cores with Gleason 9 score and asks me if I want a copy of the biopsy she stands up hands me an envelope and starts to leave, I ask is the Dr. Going come in and go over this with me now and she turned and answered abruptly, oh no he has procedures today! WTF! I left pissed! And scared! They wanted me to come back and have more MRIs done, still no consultation with the Dr. This is months after the biopsy, I still did not know my prognosis or treatment options at this time tried reading the biopsy report, spent hours on the net looking up ai I the medical jargon, and finally stopped going when the Dr. Still hadn't scheduled a consultation with me, I'm talking 3 months after the biopsy! So started my vegan protocol, hash oil suppositories, was having a very happy active sex life with a beautiful friend less than half my age, I'm 68 . Continued monitoring my psa then my psa tripled! My primary Dr. Dropped me said I was not a urologist, and tried to send me to his friend, who does ultra sound guided biopsies, a friend of mine, rip, had many of those and they said he was cancer free, just keep an eye on your psa , now this was 8 years ago, and a psa below ten was not considered a big deal. Was not diagnosed till he was metatsized to the bone and lymph nodes. Now back to me, After MANY pet scans, CT scans, bone scans, my urologist never said anything about metatsis, but I was getting some new pains, so I went to a rheumatologist to see if it was arthritis I was feeling, he asked to see my recent bone scan I had with me, and made a copy. Later that night he called me from his home and told me I had no arthritis that the cancer I had was metastasizing and to find a new Dr. You're falling through all the cracks here, he was astonished no one had alerted me to my cancers metatsis, this was not even his field, he probably could have gotten sued, but he had balls enough to do that thank God! So now I'm going to a new center in NJ. Have been on casodex for a month, Lupron,two weeks, start Zytiga when I'm finished with the casodex, along with predgnisone . My psa was at 350 now after a month down to 200 on the casadex before the Lupron. Well still on a vegan diet and hash oil, though can't robe my bike because I've had a supra pubic catheter in my bladder for six months ! The urologist said it was a stricture why I couldn't pea normally.and not the cancer , my oncologysyt said it was due to cancer and should eventually be able to have it removed. Ok if you were patient, pun intended!, enough to read all this fire away! No blind fold for me, still have my Boots on! Captsquidbrains
Into the light of a dark black night - Advanced Prostate...
Into the light of a dark black night
Wow - that is one of the most tragic stories I've read in years talking to patients. I will use your post in the future with patients who think they can treat themselves with a vegan diet, CBD oil, and "internet research." Thanks for posting this!
The Internet was invented for Drs. And Scientists to share information around the globe, not to distribute porn and sell shoes on eBay. I educated myself, no Dr. Helped me! Around here they're still doing the ultra sound guided, aka pin the tail in the donkey, biopsies, that why my friend died! They never picked up on his cancer! Ans cannibus oil is a viable treatment for many things! The government just is now getting involved for tax revenue, they put a patent on cannibus oil back in the 80's
Uh...yeah...
Guess you think I'm stupid! Don't appreciate you're response! Thought this was supposed to be friendly place !
Just stunned you did so much on your own - it is a terribly confusing disease with as many aspects to it as we can imagine. Maybe you did as well or better than a doctor helping -I don't know.
If I had listened to the first urologist I went to , he wanted to do an ultrasound guided biopsy, which is a shot in the dark unless you have a lucky dr. Or your cancer is full blown. I would be in the same place, situation, probably worse because I wouldn't have changed my eating , drinking habits!
Urologist almost did me in ..
Tall Allen you must be a Dr. Don't use my post to instill fear into your patients to fill your pockets, try educating your patients, nutrition is a big component when it comes to preventing and fighting cancer, I would like to have had a Dr. Who did that for me and would have told me my true condition, all the Drs. Love the word suspicions, that so they can't get sued!
I am not a doctor. I believe in patient empowerment.
Sorry tall Allen! These pills get me wild mood swings, as you probably have experienced. Just frustrated.
You and everyone of us that take ADT feel the same thing. At least I do.
Tall Allen. Have I missed something, are you an MD and lf so what is your specialty?
No - not an MD.
The Drs lack of being pro active in my situation, are the main reason for my choices! I still do not respect the way I was treated and ignored! After all of this the ONLY Dr. I have respect for is the Rheumatologyst ! Go figure after two years go going to the best in NYC , it took a local Rheumatologyst to tell me my cancer had metastasized!
I really do not respect this countries medical protocol!, it's all based on greed! That's been my experience!
Oh yah. I agree money , money, money ,Akers th3 medical machine go around. Money is in the treatments not a cure., we ‘re ll on the long term pay to,survive game...
You are 100% right. Your case was woefully mishandled by the doctors you trusted to save your life. We who have received horrific medical care should band together to warn others so they are not similarly sentenced to death by incompetent, uncaring doctors.
3rd causation of death in US medical errors. Good drs can save you ,a bad one can kill you. 50 yrs ago I would have been dead.. I owe my life to gods will and modern medicine and a lot of love at home.. peace to you.MGF
Sorry about your treatment by the Doctors. My husband was mishandled by doctors for the first year.. it took a hip fracture for them to finally figure out that it was cancer. He follows a plant based vegan diet too.(Except for some honey) Dr Arap is an oncologist at a cancer center in Newark. He was in New Mexico but moved to Newark the beginning of this year. He is a really nice guy, has a good bedside manner and he specializes in Genitourinary Oncology.(Includes Prostate) I am not sure how close Newark is to you. We really liked him. I hope the folks here have other suggestions for good doctors. We also use a lot of the supplements suggested on this forum. You might want to try BIRM. My sweetie has also been trying a 5 day fasting diet(It is supposed to mimick a 5 day water fast) - it is called Prolon. It is very tolerable and he seems to handle it fine. I do not know if will help his cancer.. only time will tell.
lots of hugs and prayers for you. Keep up the fight!
Softwaremom
Newark N.J. ?
Yes.. Newark, New Jersey
Sometimes you have to take the bull by the horns and make your own decisions for treatment. Modified my dosage of Xtandi (160 mg to 120 mg and added 10 mg prednisone) 6 days ago and have gotten two good nights sleep for first time in three months and no longer in pain 24/7. Quality of life maters.
Doug-AZ
Agreed, Shooter1.
Quality of life is the MAIN thing, not just a few months more.
What indeed is the point in prolonging ones life by even a couple of years if one
is going to be in pain and incontinent most of the time ?
For me, switching from meat, fish and dairy to plants is not on. Especially when there
is no hard proof that it will help me greatly.
Finally, from being a die-hard agnostic to beginning "candle therapy" is a decided
no-no. To each their own.
All the very best to you, Shooter1. Listen to everyone, think about things and decide
for yourself. Cheers !!
We all face a similar battle here and all have some sort of suggestion. In my case I was referred to my Urologist/ Oncologist by my primary Doctor who by the way alerted me to the rising PSA. The blood test was done by my former Doctor just a month before who told me everything was fine if not for the compassion and experience of my new Doctor I would be in a lot worse condition then now. In my case I was put on Zytiga,Prednisone,and Eligard and in one month PSA is undetectable I feel great and live life to the fullest. I thrive on the support of my family,friends and this ban of Brothers here. I respect everyone's opinion here and take all into consideration. In the end it is your life, your body and you do what's best for yourself. I send my respect and prayers to all my Brothers in arms here in this forum daily. Have a great day God Bless Leo.
Take these sunken eyes and learn to see
Oh my, my friend welcome to the thread. You have been playing with fire here . Get to a medical oncologist now, my PSA went from 11 to 33 in one month, Stage 4 prostate cancer with Mets . To late to remove the prostate . Your battle is here now and the longer you wait the less time you will have to live. Sorry to be blunt but seen to many friends wait to long 🙏🙏🙏🙏
Good for you, I have fired a couple of doctors along the way.
Your fired! That must have been nice? My onocologist was liable and very close to mal practice by letting me go into kidney failure while awaiting a biopsy for 5weeks until he got back from spring break with his kids. He is a dam good surgeon and was pissed when he found out I was beyond surgery and he couldn’t make any money of me.. after his urological institute crippled me with tubes and foley for a year and a half . No one else wanted to take over the mess that they had made of me.. and I kind of had to stick it out until the end with this same doctor . Finally I made him some doe and he was happy to do my orchiectomy .. what a life?
As soon as you got the Gleason 9 info it was a big red flag to get a second opinion to confirm and start treatment ASAP . Unfortunately, Changing diet and using weed can’t stop Gleason 9.
I am 51yo that went to my VA GP for my 50th Birthday Checkup 11/1/2016. PSA came back 4.6 and asked to have a digital examination as I hear that PSA are not full proof. After hearing that my father has PC he schedules another PSA for 6 months. 2nd PSA came back as a 5.4 5/24/2017 and he recommended I go to VA hospital Urology department for evaluation. The VA Urologist does a digital examination and say he feels a nodule and recommends biopsy. At this point I leave the VA system and go to Kansas City Urology Clinic for further consultation. They recommend a Ultra Sound guided biopsy. The biopsy came back as Gleason 7(3+4) and the doctor gave me my 3 options AS, Radiation, RP. After researching and talking with my wife, we decided the RP gave me the longest life expectancy. 10/19/2017 had the RP completed with Right Side nerve sparing. Once they were inside they saw that the cancer had come out of prostate in 3 places (Positive Margins). The pathology came back as Gleason 9(4+5) Stage 3 positive margins. They felt that they were successful at removing all cancer. SV and Lymph nodes came back negative. My bone scan came back negative for Mets. They recommended radiation and zytiga/lupron/prednisone to kill any lingering cells or dormant cells. I just finished radiation on 6/12/2018 and currently have a PSA of <0.008.
I guess my point is that we need to remember that these physicians are not perfect, that they are "Practicing" medicine. Had I not researched and elected myself to have the Radical Prostectomy, my outcome would have been far different if I had chosen AS or Radiation. Biopsies are not 100% accurate and are only taking a sampling from each sphere. This is the case as only 6 of my samples came back cancerous with only 4 being Gleason 7. Be involved in your care, ask questions, and error on the side of being here longer. I did, and at this point I am Disease Free, of course I am a realist and know that it can return at anytime of its choosing.
I too , am a realist in our knowledge of a reaccurance.. but not thinking about that until it comes , we’re going to have some fun , not just sit around while showing no signs , <.0008 that’s fantastic. Now we deal with no T. This is one time being zero is more than OK. Peace of mind to you. Stay well..
Captsquid2u
I'm a little confused...perhaps I missed something! You stated that "eight years ago (6 +2) your PSA was 6, two months later it went from 25 to 17, was stable at 23 for about a year, six months later it rose to 30, and than it doubled." If your PSA went to 60, how did you get it back down to 11 when you had your "biopsy two years ago?
Regarding your frustration and anger, I understand after what you have been through; however, I wouldn't throw most of the docs out there into the 'stereotyped heap'. Maybe I have just been very lucky to have found five doctors that don't fit the "based on greed" image. I have a tremendous amount of respect for my surgeon at UCI who has been keeping a graph of my quarterly PSA levels for over 12 years, answered dozens of emails and has taken numerous long phone calls (all at no charge) even though I have only visited him once after the surgery, my extremely concerned urologist at Baylor in Dallas who will always take or return my calls between patients, my very professional urologist at Loyola University Hospital in Chicago, and the two doctors at Peter MacCallum Cancer Centre in Melbourne AU who spent a considerable amount of time arranging my 68Ga-PSMA scan when neither one ever saw me or charged for their time. They have all made me feel very special!
My best to you...I sincerely hope you get this 'beast' under control.
P.S. I love the pic of your little furry friends!
My psa was high 8 years ago, back then it wasn't considered high, by my pm anyway, went up to 11 two years ago and then it went to 23 started a vegan diet and hash oil and it went down to 17 in two months, then rose ton23 24 and stayed there for a year, when I had no hash oil it started to rise dramatically and doubled, don't know if it was a coincidence or not, now I'm on casadex, lupron and start zytiga next week. Sorry for the confusion this is a very confusing disease and it seems to be different with every person. Thanks for your support! 🙏🏽🙏🏽🙏🏽❤️❤️❤️
Hang in there...you are going to be around for many years! I will soon be 14 years post-op and I feel great.
Thanks I needed that!
Capt. I am glad you are finally on treatment! Hang in there Brother, and keep us posted on your progress. Time to put the past with this disease in the rear view mirror, and move forward. I hope you have a Medical Oncologist who specializes in Prostate Cancer. Dr Willima Oh, at Mt Sinia is very good. Take those broken wings and learn to fly. Check my profile for a message of hope.
Dan
Thanks again! Yeah I've been running a clandestine orphanage in my backyard for mostly orphaned racoons for over thirty years, the mothers get trapped and poisoned and they know I always feed them and provide water, they know my scent, it's been passed down for generations, people are afraid of them around here, so I have to be very secretive, I call it my Underground Railroad! Lol
That very humorous.. Those raccoons hands are so humanlike.. those guys probably call you papa.
Believe me that your care is unusual and not the rule. Be thankful.
That’s quite a story. So sorry you’ve had to go through all of this.
Glad you found us! Feel free to ask any questions regarding treatment here and I know you will get great input from fellow PCa patients and caregivers to help you.
Are you pleased with your current oncologist? Do they specialize in prostate cancer? If you are interested in getting any recommendations on a medical oncologist or hospital, just post where you live (city/state .... I assume the US) and you will get some suggestions to consider.
Love the raccoons!
James
Thanks James I'm going to Robert Wood Johson cancer center, I had an oncologysr Dr. Ferrari , but only for a consultation, then she left Rutgers to go to another hospital, I will not meet with my new oncologysyt till July 13th. I'm on casadex, lupron, and start zytiga in a week when I'm through with taking the casadex. I'm very depressed and have had neuropathy in my feet for over 30 years from I guess a few car accidents I was in but these meds really excacerbate the neuropathy and I loose my balance quite a bit and fell twice, guess that's the side effects. I'm 68 live alone, was a photographer for forty years then smart phones put me out of business in a year. I also play in a band. With my brother, they're playing tonight I felt too off balance to play. He's a dentist, very wealthy I'm living on 600 a month! I'm worried because he never takes care of my teeth and the want to put me on proilia in July he said he would check my teeth before then, but I don't trust him and will get a second opinion without him knowing, family yeah! Ok thanks again I'm very scared, can't sleep, expecting worse to come with the zytiga and predgnisone . I also have a supra pubic catheter in my bladder now for six months because I couldn't pea! Ok they say my new oncologysyt is good, actually all they seem to do is decide what drugs to take and see if they work. Any recommendations or critiques are welcome. Wanted to go to MSK in NYC but they didn't take my insurance. Ok thanks for your support, I feel like I'm in prison, afraid to go out feeling like this, guess I'll adapt!
Love the picture. My daughter had a pet raccoon for years. “Rooney” was litter box trained and lived in the house like a cat until she started opening the refrigerator and all the cupboards. She used to crack the eggs all over the floor and make the worst messes. She got a new home outside in a rabbit hutch.
I hope you can get back out there and play in your band and enjoy life.
We’ve had too many sleepless nights to count, because it’s so frightening, but once you have a plan in place, you’ll feel peace and calm come over you, and all will be well.
Your brother needs to be decent and take care of your teeth! The end.
Debbie
There are so many treatments now that men can live a very long time with PCa. It’s just about adjusting your expectations and accepting a new normal. We are all afraid at first. Then we remember we need to focus on the moment ... living with PCa ... not wasting our time being afraid of dying from it.
Zytiga’s side effects are quite mild for most men. I have a bit more fatigue...but I’m still working full time. No need to worry about that.
The best way to get control is to educate yourself. Knowledge is power ... it allows you to take charge of your health, ask intelligent and specific questions of your doctors ... and understand what’s going on
There are men on this site living with PCa for 20 years or more. Ignore all the statistics. Everyone is different and everyone has a different experience with the various treatments.
We are all here for you! You are not alone. 😊
James
Bthanks James ! I'll sleep better tonight! Appreciate your kind attention to my mental state, it really means a lot! Thanks again and have a great weekend!
Sleep is essential to healing. 20 mg of melatonin helps me .
'JamesAtlanta' mentioned that "men on this site have been living for 20 years or more." My father and his two brothers all had RPs in their early 60s and lived for 25 to 30 years on DES (for the majority of the time) and were later switched to Lupron when DES was taken off the market in the early/mid 80s. My dad had his 'primitive' RP in 1969 and died in 1999 at the age of 89. He was still riding his Honda Gold Wing motorcycle at 85...finally gave it up after getting hit by a car which resulted in a fractured hip. I had my RP at age 61 and I'm enjoying life to its fullest at 75 here in Thailand...still asymptomatic and feel like a 'kid in a candy store'!
Hey capt.. WTF indeed.. a freakin rollercoaster. That primary did you no good. Sounds like your on the right path now. I like the canaby and diet I also do both. . Welcome aboard , we keep paddling. A young partner can help carry any loads. A lot of suffering but we can live most of us for more time than the drs say we can. The med system saves us and diminishes our capacities at the same time. It’s a balancing act to keep sane , active and above all happy. Whatever Happy means to you. Go for it. Only one life to live. Any good day should be capitalized on and enjoyed. Take it easy✌️
Well you've come to the right place for info and camaraderie.
My experience with a Psychiatrist:
Doc says: So what's your problem?
Me says: I don't know doctor but everyone seems to ignore me.
Doc says: Okay Next.
Good Luck and Good Health.
j-o-h-n Monday 06/25/2018 1:49 PM EDT
Hahahaha. N E X T .. you great humor is well recieved therapy for all.. Thank you ....
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