May 9th 2018 I was diagnosed with prostate cancer. My first visit my PSA was 6.46. with a gleason score of 9 (6-10). 4+5 = 9 is an aggressive form of the disease. I’ll have to wait a few days before they schedule me in for a CT / bonescan..ect. This will tell me how far its spread and what stage I’m in. Now, I just sit and wait. I’ve not decided what treatment I’ll do. The doctor’s recommended robotic prostatectomy because of my age. Anyway, I know I have cancer and I want it out. So, my plan is to do water fasting and after the fast is over then start eating plant-based foods only, cutting out all carbs, sugars and saturated fats out of my diet to see if I can slow, reverse this nightmare. Also, by fasting and eating alkaline base foods my weight should go down pretty fast. I want to get stronger before I go in for surgery, or even better, I want my body to destroy this cancer on its own without the surgery. Along with the diet,
I'm also using CBD oil .5 in the am and .5 at night. Also, drinking a hot glass of water Baking soda + honey solution AM and PM. Not sure if any of this will help but there are a lot of testimonies saying otherwise. As you can see, I'm scared and willing to try, do anything to get ride of this before I have to follow the oncologists advise of surgery. I've heard of to many stories and studies saying that conventional treatments a lot of the times make things worse and shorten the lifespan. I believe that if a person can change their diet, the body will begin repairing it'self. At least it should be the first treatment the docs should try, depending on how fast the cancer is spreading.
I’ll also, follow the doctors advise of course, but what I’m going to do, should only help with fighting/slowing the disease. I’m going to record my fast, blood pressure, weight, and general mood in a journal. For a successful outcome, I’ll also add-in the main ingredient which is Prayer.
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helpjames
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Then know that one of the most powerful things you have is all of us, here, your new brothers.
Then know the first few weeks after diagnosis suck emotionally. A natural human response to bad news, today is not the day to make life changing treatment decisions
Then know you are not dead yet. Even with your diagnosis, you’ve got many years and lots of treatment choices
Then start meeting with medical oncologists ... your scans may rule out surgery.
Then read past posts here
Then know that every possible alternative treatment has at least one positive testimony you can read about and probably many more that are negative and not heavily promoted online.
Then, for today, know that today is your lucky day. You were diagnosed earlier than most with a Gleason 9 and have a chance to do something about it. Please tell us more about you. Are you African American ( see twiceasmany.org ). Which country are you from?
Thanks Darryl, I needed someone to lift my spirits and I think this is a great place to start. I'm I'm from United States, Ky, 47yr old male Caucasian. I have an identical twin who recently also had a PCA score which was at 1.7 thank goodness! Maybe someone can help me better understand this diagnoses.
James, February 2016 I was diagnosed at 46, PSA 286, Gleason 9 with cancer in pelvic and abdominal nodes. I started hormone therapy immediately consisting of Lupron and Casodex. June 2016 I did 6 cycles of chemotherapy (docetaxel) and in December 2016 I had an open prostatectomy done with an extended lymphadenectomy. I have had an undetectable PSA since and still have one today with no evidence of disease showing in scans.
Hit it hard and fast with several different modalities while cancer is at a manageable point. You have to make your first shot your best and just eat healthy to keep your immune system up. Stay active and exercise to stay strong. The baking soda honey combo isn't needed. Think kale, broccoli and blueberries.
The results from your scans will factor in on treatment options. I don't know where or whom is doing your surgery but who you choose is critical. You need a specialist and a surgeon that is highly skilled in this area. There can be some hard core side effects if it's not done right. The doctor I have and continue to work with got me to a place that nobody else said was possible.
At our age the adage that something else will kill you before the cancer does not apply. Read and learn and become educated with your disease. It is your disease and it seems no 2 men respond exactly the same so don't let statistics cloud your head. There are exceptions to every rule. Stay focused and keep us posted.
Thank you so much! I'm sorry we have to deal with this nightmare! I'm going to keep praying for everyone on this forum. I'm sitting here waiting to get a ct and bone scan. I'll keep everyone posted.
We've all been through the kind of panic you are feeling, and "just cut it out" is a common first response. As some time passes, you will be better able to make more rational decisions. Do you have time? YES! Even men with high risk PC like yours did no worse and no better by waiting 3 months to get treated.
he bone scan will tell you more, although at your low PSA, it is unlikely to detect anything. NIH is now running a free clinical trial of a very sensitive scan that may be able to detect small metastases in high-risk patients even at lower PSAs. You can call them directly to get that scan. Here are the contact details:
If you are clear of metastases, you will have to decide on a treatment. Given your high Gleason score and your perineural invasion, the treatment with the best record of success is a combination of hormone therapy, external beam therapy, and a brachytherapy boost to the prostate. They found that in men who started with surgery and followed up with salvage radiation, the rates of distant metastases were about 4 times higher, and PC survival was only half as good compared to men who had brachy boost therapy:
I know I just threw a lot of new info at you, but please slow it down and don't make any decisions until your emotional temperature comes down. Prayer is great for centering us and providing perspective.
Actually regarding low PSA -- the bone scan can show things. PSA is pretty individual. My husband at age 51 had PSA of about 8 when he should have been diagnosed (blow off by PCP, even with a heterogeneous prostate - another story). HIs PSA has never gone higher than about 42 I think. At diagnosis, with a PSA of about 42, he had advanced metastatic disease in his spine. Surgery was never an option for him. Sorry for that bad news.
Good news -- he just rode a century bicycle ride two months ago (4+ years after diagnosis) and is doing pretty well physically. Mentally it's a tough battle with ups and downs. He had a great run with Xtandi and now trying Zytiga.
Dear HelpJames -- it's reallly hard but take it "one day at a time." That worn-out adage takes on new meaning and depth when dealing with this. It's really hard at first, but you don't yet have all the info you need. The bone scans and possibly MRI or CT are really important. Honestly, the first couple of months were a blur of scans and scopes and results, changing the first oncologist who was too laissez-faire, getting an expert consult (at UCSF), figuring out what to do. First step was Lupron + Xgeva (one dose of Zometa was too much for hubby) + Casodex. Then chemo (per CHAARTED study.) It was a BLUR!!! At the very least all those scans and tests set an important baseline, which I truly hope in your case will be zero on the bone scan!
See UCSF (and Harvard) for a nutrition research report specifically on Prostate Cancer.
Wishing you the best outcomes as you get through these first months.
James I responded similarly when I was diagnosed. I was 49 yr old G9 with a psa of 12. Go to my profile and see my story. Today I would do nothing different than the decisions I made at the time of diagnosis. I did my research and found similar results for prostatectomy and radiation therapies. Read my profile and posts and you will see you are not alone. The treatment you choose is a personal decision and you need to be comfortable with the choice. We can share with you our stories, our choices, our experiences, but you will see this disease is different with each person. You found a great group of guys that are dealing with the same monster PCA. Good luck on your decision.
Wow, I've read your profile and it is very impressive! You have been through a lot! Before I even knew I had cancer, I wanted to change my life. I have always lived a very sedentary life style and a few years back I wanted to make positive change in my health so I started to walk / run. One day after a walk, I starting challenging myself.."I bet I could do 3 miles everyday until I reach 500 miles." So I started and it took me about 5.5 months to complete. I felt like a new person! Now, I just have to get my eating under control...ect. I have done that by going to a mostly raw veggie, no sugars, carbs..ect. All these bad habits we get ourselves into is hard to reverse at first, but when we replace the bad habits with healthy habits, life seems to get better and new opportunities arise.
My point is that my body, was sending me signals to stop laying around. It was telling be to get busy living, or get busy dying. I feel that part of why I got this was because of my poor lifestyle habits..Both myself and my identical twin are computer technicians and have never really taken our health seriously. Both of us grew up smoking, drinking, partying...ect. but that all changes as we get older and wiser. Reading your profile has helped and inspired me to fight and take back my health! Thanks again and God Bless you!
Your diet changes will help. I learned that becoming a vegan was beneficial in many ways beyond the immediate physical changes - but it will not be a comprehensive attack on cancer without cutting-edge oncology. For improved diet management download The Daily Dozen app from Dr. Michael Greger. His video mini-lectures on evidence-based nutritional strategies are extremely useful and comprise a complementary medicine program to support your traditional treatment.
Thanks you so much for the wealth of information! These links will provide me with much needed education. Since I've changed my diet a few weeks back, I've never felt so good and I have a ton of energy. Amazing how fast our bodies bounce back from eating poorly. I was eating the SAD diet and it got to the point where every time I would eat out at a fast food restaurant , I would get upset stomachs, low energy,,feeling bloated...ect. I can't believe I was paying to get sick! I'm so glad I'm learning how to eat health now, and exercise..ect. Its just sad that it took me getting sick to care more about my body.. I thank everyone on this thread that has giving me strength and much needed guidance!
Once the engine is secure...and the plane stays under control you use your Emergency Check List to make sure everything is covered....With two pilots it goes much faster but usually so does the plane....
I'm cutting and pasting your post in the event an engine fails on one of my flights. This way I can show it to the capt. or the co. and look like a hero. Not to worry I'll give you full credit so you can be the co-hero. Move over "Sully" .
Wow, I'm very thankful for all your support and responses. Getting a report like this is jaw-dropping and I'm glad I found this forum! A lot of sound advise. Tall_Allen, I'm going to look into that free trial for PET scan. Looks like I would be a perfect candidate. I'll take anything thats going to be free. I'm sure all this is going to be costly. Thank goodness I have insurance and I also bought cancer insurance 2 yrs ago. That will pay 20k just for a diagnoses of APC. The wife and I are going to tuck that away to help pay for all this. I think, I'm going to first relax, then send this pathology report to malecare.org for a second-opinion. Thanks Darryl for that! Dayatatime, Thanks for your advice! I'm so sorry for what you all are going through at such an early stage in life. There is so much information to take in. Thanks bitittle and John for your support. I'm here to support you guys as well! Please don't hesitate to ask me questions, ect..I'll keep you all posted as things progress! I'm praying for all of us on here that we will overcome this trial in our lives! Yesterday is not ours to recover, but tomorrow is ours to win or lose and If you fell down yesterday, stand up today. Peace!
Hi James welcome to the club none if us joined but got excepted anyway. Do your research, find the right Doctors you are comfortable with that is the key factors, most of all stay positive. This is a fantastic forum with a wealth of knowledge. We are all Brothers in the same fight here. Leo
Welcome, hit it hard while your weight is up, my doctor said eat everything you can to keep your weight up, the cancer will make its own sugar from whatever you eat. Stage 4 here at 66, 22 months ago. Doctor went aggressive with 6 cycles of chemo, lupron and Xgeva monthly ,with full blood panel. Will not remove the prostate as the cancer has already left it and was already in the bones,spine and lymph nodes. Get a good oncologist and if that’s not what you want to hear get a second opinion. Fight the good fight
James, I'm at stage IV having been in treatment for 5 years now. Hear this: You have a marathon roller coaster in front of you. Tall James has given you invaluable advise. Take your time l immediately wanted surgery but at my surgery prep meeting my surgeon cancelled after looking at my latest labs and scans. Too late The cancer had already spread We were devastated but 5 years later I'm glad I didn't have surgery. There are serious long lasting side effects to consider. Take your time to consider what seems best for you. Build a relationship with an oncologist you trust who will treat you as a partner making decisions. That trust will be critical during some times when neither of you know what to do. Whatever your decision prepare yourself for the long haul. You will have incredible emotional and physical highs and lows. Expect them. Build supports now.
Hi James, Paul from Australia here, diagnosed April 2016 with PSA of 15.6 and G10 at age 49. I was in shock for a good 6-12 months after diagnosis. I applaud your dietary improvements and CBD oil. I did all of these things and many more, but I fear they made little difference in my case. You can read my story in my profile. You've found a great place to find the answers you're seeking.
With parts of your tumor beeing Gleason 9 I think it is advisable not to delay a primary treetment (surgery, radiation or brachy) for too long. My advice is to do the primary treetment and then go for this diet.
Take it slowly. Prostate cancer, even grade 9, is almost never an emergency. You can certainly take 3 months to decide what to do. If your diet and lifestyle changes prove helpful, you might decide to stick with them for a few months longer before trying what one of my oncologists calls "school medicine."
Whatever you decide will very possibly change your life forever, so best to study, think hard about what is important to you, and choose carefully.
In my journey, the first few weeks and months after diagnosis were the toughest. My first waking thought was "I have cancer!" It's pretty hard to make careful choices when feeling that kind of panic and stress.
But it does pass, and does get better. My journey has been 11 years, there are many here with even longer stories. You've found a great resource here. Someday you will look back on this dark time.
Well guys I got my results back CT/pelvic - Full body bone scan and I've got good news.
I think its good news anyway..I have not been back to see the doctor about my results but they posted my scans to my healthcare portal account and I thought I would post it here to see if you guys can help me read this. I'm not sure what the doctors are going to say. I'm sure they will want to remove my prostate with surgery since it is localized and not spread yet. With a Gleason score of 4+5 and PSA 6.46 on 4/4/2018. On 1/24/2018 PSA was higher 6.70. the oldest PSA score was 3.15 on 10/15/2014. Any help on which direction I should choose would be much appreciated.
NM Bone Scan
REASON FOR EXAMINATION/PROCEDURE: Prostae cancer
EXAMINATION / PROCEDURE:
NM BONE SCAN WHOLE BODY May 29 2018 - 12:20;
CLINICAL INDICATION:
Prostate cancer. On 4/4/2018, the PSA level was 6.46 ng/mL.
TECHNIQUE:
At 3 hours following intravenous administration of 26.4 mCi of Tc-99m
MDP, whole-body images were acquired in anterior and posterior
projections. Regional images of the bilateral skull, cervical spine,
thorax and upper extremities were acquired in multiple projections.
COMPARISON/CORRELATION:
None. CT of the abdomen and pelvis 5/29/2018.
FINDINGS:
Focal mildly intense increased bone and/or joint uptake involving the
left proximal fibula, most consistent with post-traumatic/stress-related
changes.
Focal mildly intense increased bone and/or joint uptake involving the
acromioclavicular joints and mid-feet, most consistent with
arthritic/degenerative changes.
Normal soft-tissue biodistribution. Two kidneys visualized.
IMPRESSION:
No definite bone metastasis.
Isolated focal lesion in left proximal fibula most likely stress-related
or post-traumatic in nature; serial bone scintigraphy can monitor
James, I can only tell you what I've been dealing with. I'm 49. They hit me with a Gleason of 8, and a 3+5 and a bunch of 4+3's a month an a half ago. They told me it was very aggressive and I took their word and had it out. I was diagnosed in the middle of April, and had it out on May 29th 2018 (week and two days ago). Hospital stay was a little more than the one overnight visit due to some swelling and such. My bone scans were clear as well, but it later tests showed it was outside of the prostate a bit. They think they got all of it at this point, but it's kind of a wait and see thing. Stomach, a bit sore, they used the Da Vinci robot and they cut six holes in me (super glued up). Prostate "or where it was" kind of feels like someone shoved a pool ball up your rear end. Not super bad, just odd, but getting better. Incontinence - I just had my cath out yesterday. Happy to get it out. VERY. Laying down with it, ok np. Lounging back with it propped up, np ok. Sitting up in a chair, ouch...not so much. Getting it out, breeze, more relief than anything. Yesterday my incontinence was "alarming" to say the least. I thought, "here we go"...., but today (next day), 90% of that is gone, and pads were dry from overnight. I don't know where the rest of this story goes, but the cancer is out and I'm currently not going through diapers (which is a plus). They didn't take any of they lymph nodes as they didn't see a need for it, but there's some question there. Hey, if they have to go back and an grab them, great. At least no cath. Is it a little shorter, perhaps. I haven't measured for years, so that was kind of the least of my concerns, not that it won't be to someone else. They do take a piece of the urethra that does tent to make it look shorter. I haven't dared to test anything else, but figured I'd give you a run down on what to expect on having it out. It's not that bad. I thought it was going to be far worse. Hope things go smoothly with your and you get rid of it, or choose a different treatment. I went for the treatment that would ensure the cancer is "gone". There are a lot of choices one is faced with all at once when this happens and it's nice to hear experiences from others. This board is certainly worth it's weight in gold
One other word of advise. After surgery, after you get the cath out, sit down to pee. I know this is weird, but there's not control on the spray (direction, force) when you first get it out. Learned that the hard way....."Dear lord, someone put a bucket to put over this thing"
Thanks so much for your information! I'll remember that when I go to sit down..lol..I hope you are doing better and I wish for a speedy recovery! God bless!
Back in 10/15/2014 Age 43, I had a complete metabolic blood panel done. This raised some red flags when my PSA came back as 3.15 WBC was 7.6 and Testosterone free was 3.75. The doctor said it was probably an infection and not to worry about it. They will test it again, next time I come in. Then a few months later I wanted to see if i had a low T issue.
So they ran me through another blood panel. This time 12/30/2014 my PSA is at 2.39. little lower but my WBC 11.4 and this time my Testosterone free was 57.6 and total 330. I was told my insurance was not going to cover any testosterone therapy so I decided to not to. I was just going to exercise and eat better. Then, a few years later 1/24/2018 I got another checkup. This new doctor looked at my profile and wanted to do another blood panel to see where my PSA was at. It showed my PSA is now at 6.70 WBC 11.4. This is when she scheduled me to see a urologist. They preformed a DRE and found something unusual. Then I got a biopsy and was told I had cancer. I'm thankful that it appears to be localized. CT/bonescan shows nothing. I hope this helps you! I'm still processing all of this and I'll be praying for all of us on this board! God Bless! You should lookup mpMRI Vrs Truss biopsy. I was scared of the biopsy at first but it really was not as bad as I was expecting.
I think you've received lots of good advice and obviously have a lot to consider. Just one thing, G9 is aggressive and I would personally be inclined to make a decision sooner than later and not take 3 months as suggested.
I monitored my psa before I was diagnosed and in a 3 month period my psa went from 3.5 to 8.2 suggesting a lot can happen in 3 months. Biopsy revealed G9 (5+4). Age 46. A PSMA scan, which I would suggest having as it'll tell a lot more than bone and CT scan, showed that the cancer was most likely still contained and I had surgery 4 weeks to the day after my biopsy. Fortunately my pathology showed it was contained and margins were clear. All PSA's have been undetectable since. Now 20 months post surgery.
If it's still contained, at your age, surgery does offer an excellent chance at cure, of course if it has escaped there'll be follow up treatments and you may as well have had radiation in the first place instead of surgery. If you do have surgery, in general, us younger ones recover better from the side effects. Personally I was continent from the moment catheter was removed and I can run, ride, lift, cough sneeze and have no issue at all. Potency took time but I now also have no issues there. Not everyone will be this lucky though.
Bottom line I'd suggest is don't muck around, get a psma scan and if contained go for cure with surgery otherwise consider radiation as it will treat a wider field. Best of luck.
Update; Prostate Surgery completed on :7/12/18 took 5 hours. Just wanted to post an update as to my current status and pathology report after my surgery. Also, I wanted to thank all of you for your support and knowledge! I feel I've made the right decisions.
The doctor told me to come back in 3 months to check if I still have cancer. He was sure he got it all. After the surgery, I've been dealing with,constipation,bladder spasms and of course the incontinence issues. The doctor was able to save all the nerves! He checked my surrounding Lymph nodes and all was clear. I value all of your opinions on this forum! God Bless you all! Let me know what you all think of this report.
Surgical Pathology Report:
DIAGNOSIS
A. PROSTATE AND SEMINAL VESICLES, RADICAL PROSTATECTOMY:
Very similar to my pathology except mine was gleason 8 tertiary 5. I am one year out from surgery with undetectable psa. I am due for psa check next week. I wish you the best!!
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looking for guidance?dad’s Biopsy diagnosis Gleason 4+4
Anyone with M1C Gleason 9? 
My 28 Days Water Only Fasting Experience and IVCs
Latent Gleason Number 5.
Gleason 9 PSA 666 Dx 2010
