I recently moved to FL and I have an appt at the Moffitt Cancer Center in Tampa next Wednesday (8th) where I had all my medical records transferred to from NY.
Since my original diagnosis in 2013 I have been doing Active Surveillance and have successfully kept my PSA mostly under 5 but have had temporary spikes up to 10 but was always able to bring it back down with natural protocols. However, I suffered a family tragedy in 2017 in which I strayed from my diet for a prolonged period and this past summer my psa started running away...In October an MRI showed stage 4 metastasis.
I realize that I need conventional intervention at this point so I wanted to reach out to you in hopes of gaining some insight and advice.
First, I'd like for them to go through me from head to toe and see precisely what parts of me are affected and if it has spread or has been stabilized since the last scans.
Do you think it will be likely that they'll give me a new series of scans since my most recent scans are over 3 months old? If so, should I ask for an MRI, CT, PET, or Bone Scan?
Reading through this forum over the past 3 weeks I'm so impressed with the knowledge many of you have so I'm reaching out for some advice on what questions I should ask on Wednesday regarding treatment options I may have at this point. I'm meeting with the head of Oncology/Urology as well as the head R.O.
I'd like your opinions on my thoughts of inquiring about SBRT radiation if I'm a candidate, if not then I was thinking of mono hormone therapy with something like enzalutamide or a similar blocker to work synergistically with my alkaline diet and plethora of supplements and other natural/alternative protocols I'm still active with. I'd like not to be on LHRH if possible.
Also, I wanted to ask you fellows about PSA. I see some of you guys being concerned with PSA scores of like like 0.01 and 0.2......So I can't help from feeling compelled to say that with my current 47 psa I'd love to have a psa that low, but then I see others posting that their psa at diagnosis was over 2,000 so then I feel lucky to be at just 47. I know there's something I must be missing.
So I guess I just don't understand what the PSA test actually measures/signifies. I know it measures Prostate Specific Antigen in the blood but is the amount of psa in the blood a result of tumor size, number of tumors, extent of metastasis, or intensity (grade) of the cancer?
I appreciate all of you as well as this forum. I'm concerned about my upcoming appt at Moffitt and I just wanted to reach out to you guys for some advice as I want to walk in as prepared as I can be.
What I understand from your post is that you developed Stage 4 metastatic prostate cancer in Oct 2018. The treatment will depend on how many structures are involved with mets...is it just bones or bones plus other organs like lungs,liver etc.
And if it is bone only disease then how many spots on the bones are active metastasis?
Only, bone scan / PET CT/MRI can give us this crucial info to design a treatment plan.
You do not have right concept about PSA. PSA doesnot tell you exactly what is going on inside. Because some man's prostate cells churn out a lot of PSA and other man's cells only release small amount of PSA. The man who has starting PSA of say 2000 can quickly drop to 0.2 after treatment as those cancer cells are very fragile . Other man might have a PSA of 9 but cancer cells in his body are very resistant and strong, so treatment has a hardtime killing those type of cells. Sadly, some of the most aggressive prostate cancers have very low PSA.
I am impressed with fact that you were able to keep your PSA down for years with natural products and treatments...When you have time please make a post about what really worked for you. Myself and many forum members have interest in complementary treatments besides standard medical treatments.
When it comes to PSA, anxiety is usually based on the trend and not the absolute numbers. I felt a great sense of relief as my PSA dropped from 200 to 20, to 2, and eventually all the way to <0.01. I'm very sure I wont be as happy about 0.2 on the way up.
PSA is a marker, it is the trend you want follow. Is the trend up or down. Many factors can affect PSA, Infections, stress, inflammation, etc.
Your age and weight will be factors on what treatments will be offered to you.
Thank you Nalakrats, Tom67, Tall Allen and daleboy -
I should have included more details to make myself more clear. After my initial diagnosis in Oct 2013 I had a PSA of 10. At the time, I didn't even know for sure what my prostate did for me much less what PSA was. My uro said that a psa score of 10 was deadly and he gave me a biopsy the next day and he said that was a 4+4+8 and he said that if I didn't get prostate removed immediately the aggressive cancer would run through me and I'd be dead in as little as 3 months. He said I needed to get the prostate out immediately. He wanted to schedule the surgery for the next day in fact.
I told him I needed time to think about everything. He said I had no time as he literally banged his fist on his desk telling me that if I walked out of that office then I must have a "death wish".
I've I already been ridiculed on this forum for mentioning that I've chosen active surveillance for the past 6 years but my primary over-all treatment was my connection and faith in God. I prayed fervently that night back in 2013 and said out loud as I cried :
"Jesus, you've gotten me through all the tragedy I've been through, literally saving my life with spine cancer a decade earlier among other tragedies. I can't believe you got me this far in life just to take me out now with prostate cancer. I feel I have much more to do on this earth. If this is in alignment with your will, Please light my path and supply me with the weaponry I will need and I will fight this like I've never fought before"
I went home that night feeling better but still not knowing what to do. When I turned on my computer I saw an email from an old friend who I hadn't heard from in over 5 years. It was a link to a video of Rick Simpson "Run From The Cure". He said in the email "I just got a feeling to send you this video, hope all is well!"That was crazy, I thought. I hadn't heard from this guy in over 5 years and out of the blue he sends me a cancer cure video?? He had no idea I was diagnosed with cancer. I knew it was God inspired.
So I watched the video about the healing power of Cannabis Oil....I mentioned this in a previous post on this forum and was about tarred and feathered by another user for "spreading false hope and unproven treatment"to people here so I am very nervous about telling more about it here but I can assure you I have nothing to gain by posting anything on this forum that I can't back up with medical records.
After watching that video, it was another miracle of how easily I was able to get the cannabis raw product, the precise strain (Indica) especially not knowing who to ask and living in a state where it was illegal. Jesus guided me right to it, led me to a video of how to make it and 2 days after I received the initial video I had the oil in my system at the heavy dose recommendation of 1 gram er day for 90 days. That's a lot, like the equivalent of smoking 200 joints a day for 90 days.
During that 90 days I immersed myself in self education about prostate cancer and learned about the importance of nutrition. Every day my prayer to Jesus was "Put me where I need to be Lord"....
At the end of the 90 days I went back to the Uro and he literally laughed at me telling me I'm lucky I wasn't already dead. I asked him to give me testing to see the status of the disease. He gave me a DRE and seemed confused telling me, "well, it feels different but that doesn't mean anything! I'm sending you for an MRI!"....
The MRI came back negative for Pca and the uro was so arrogant he told me that the MRI machine must be malfunctioning. My PSA was less than 1 as well.
It was then that I knew God performed another miracle on me and that I needed to totally change my diet and lifestyle permanently, which I did. I went back to Uro every 3 months and then every 6 months and then once a year for PSA's which I had been able to keep below 5, a few times they spiked to near 10 when I was under a lot of stress but I was always able to bring them back down through prayer and meditation as well as diet.
In 2017 I lost my entire family in a horrendous tragic event, both elderly parents and all siblings. I was thrusted into shock and depression and no longer cared about anything. I waned from my diet and meditation and even began questioning God. After a few months of deep depression my holistic dentist started spending time with me and helped me through reminding me of how far God has seen me through and this latest tragedy was either going to take me away from Jesus or bring me closer, the choice was mine.
So with his help, I got back on track after nearly a year of being off the diet and supplements I was taking. However, I began feeling bone pain in my hips, ribs and neck and my next PSA back in June was 36 and my Uro literally laughed like a hyenia saying "I told you so! You should have listened to me!"....I said "you told me I might be dead in 3 months 6 years ago!"....So he said the bone pain I was feeling was definitely metastasis. He seemed to be gloating over it. He said he couldn't get me a bone scan for a week but he'd give me a chest Xray that day which he did. He said the Xray confirmed mets to my ribs and hips and he seemed to have great pleasure in telling me this.
So with that I left him and went to my church and prostrated myself on the altar and just sobbed, "Lord, please put me where I need to be. I feel I have much more to do here on earth, if this is in alignment with your will, then give me the tools and I'll continue to fight".
My holistic dentist advised me to start Oxygen therapy (H2O2) protocol as well as Colloidal Silver. He then took me to a Spiritual Healer and he prayed over me and I felt heat come from his hands. The next day I felt the compulsion to get a new Uro which I did. Funny thing, when the new Uro saw my Med records he said that the pathology report stated I actually had 3+4 Gleason, not 4+4 like original Uro claimed. He gave me a bone scan and it came back negative!....He then gave me a CT scan and it showed the tumor had increased in size engulfing almost the entire lobe of my prostate abutment along prostate capsule and bi lateral invasion of seminal vesicles but no bone metastasis. But based on my bone pain in hips and ribs and neck and the positive Xrays he said I likely had mets in hips, ribs, spine and neck.
So I moved to FL for a lot of reasons but one was to be able to access daily year round sunshine for direct VIT D which a is a powerful cancer fighter as well as the healing power of sea water and the negative ion laden ocean air.
So at his point, after being on the H2O2 and Colloidal Silver for past 3 months, all bone pain and urinary symptoms have disappeared. Not having a doctor here in FL I went to a clinic in early December for $49 and got an independent PSA test which showed my PSA is now up to 47 from 36 back in June.
So I called Moffitt Cancer Center in Tampa last month and scheduled an appointment and had all my medical records sent to them. I think my original Uro was a quack scoundrel stating my Gleason was higher than it apparently was and telling me I likely had just 3 months to live back in 2013 So at this point I really don't know what I've got going inside my body. But I hope to find out next Wednesday.
As I said above, I've I already been ridiculed on this forum for mentioning that I've chosen active surveillance and alternative protocols for the past 6 years but my primary over-all treatment was my connection and faith in God. I have nothing to gain by posting anything on this forum that I can't backup with my own medical records. I'm following God and I feel He's gotten me through the past nearly 7 years without major intervention ie surgery or rad but now I feel He may be telling me I need some conventional help and I feel He's led me to Moffitt as well as this forum.
Learn-All, you ask for me to share some of the alternative protocols that have worked for me. I created a website last year which contains most.:
Thank you, Dusty for sharing your story. Your ability to maintain your cancer with natural product and your innocent communication with Universe might have kept your immune system strong...And everyone knows that strong immune system can keep cancer under control. Please get conventional help now as all medicines, surgeries etc are all gifts of God. Bible tells us " even a leaf can not move without his Will" Best wishes.
So you have been diagnosed with multiple metastases in your hips and ribs. Recent trials have shown that prostate radiation when there are 4 or more metastases is not going to provide any survival benefit, but you may wish to do it anyway to prevent prostate symptoms. You also need systemic therapy - hormone therapy and either docetaxel, Zytiga, Erleada or Xtandi. If the bone metastases are causing pain, they can zap them with a single high dose of SBRT.
"I realize that I need conventional intervention at this point so I wanted to reach out to you in hopes of gaining some insight and advice. "
Since you're asking, here's my advice: Discontinue thoughts of non-conventional treatments, accept recommendations of your oncologist, and realize that, while these are science-and data-based, they are also guided by what your insurance will pay for.
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Just came back from Dr. Appt. Erleada failing
Need help for upcoming appointment
Docetaxal treatment #2 upcoming. 
Thoughts on upcoming treatment of recurrence?
