Hi folks,
Well, the Active Surveillance has ended. About a year ago my PSA jumped significantly, and it was about due so I went in for an MRI. The MRI showed that my cancer was basically still the same, and confined to the prostate. Due to the jump in PSA though, my Dr also recommended a PSMA scan. This scan includes injection of a radioactive tracer that binds to prostate cells. After sitting for a while to let it fully circulate through my body, a CT scan was done. That scan indicated metastasis of my cancer to some lymph nodes. While still confined to the groin area, my cancer had spread. It became time to do something more than just AS.
I'm still confident that this entire situation is in God's hands and that He will get me through it!! I've told many people that 'I've never lost a night's sleep, or worried about my cancer since I was diagnosed' and I don't intend to now. Whatever God has in store for me, he will provide for my needs.
And God is able to make all grace abound toward you; that ye, always having
all sufficiency in all things , may abound to every good work:
https://www.bible.com/bible/1/2CO.9.8
As for a treatment, after much research I settled on Proton Therapy from Emory Cancer Center in Atlanta GA. Treatment would entail me driving 1+ hours to get there and 1+ back every M-F for roughly 9 weeks. So a 5 hour chunk out of my Mondays through Fridays. I wasn't looking forward to doing that, and if you've ever been in Atlanta rush hour traffic, I'm sure you'll concur, but it was a price I was willing to pay to get the "best" treatment. The treatment costs actually include a hotel stay at somewhere about 15 minutes from Emory, so I could technically spend the week away from my family, leaving Monday and returning Friday each week. I say I would have suffered the drive in order to be with my family during the week, but who knows, ATL traffic may have changed my mind.
Emory, of course sent me to get new scans (prev scans were 6 months old) and then I reviewed the results with their Dr. It bugged me a little that the entire time I was with him, I didn't get the impression that he thought that Proton Therapy was best for me. Most Drs I've ever met usually think their "specialty" is what everyone needs. Even though my main tumor (located in the prostate) now abuts my rectum, and several of the lymph nodes that appear to be cancerous are immediately adjacent to important nerves, tissues and sphincters (which to me indicated the need for the most accurate and least likely to cause side effects type of treatment), he flat out said that Photon therapy would likely be "just as good". All of Emory's marketing materials and website indicate that Proton Therapy is a "pencil beam" form of radiation and is more focused and less likely to damage non-targeted tissues than Photon Therapy (another form of external radiation beam therapy). Proton Therapy also has the distinct advance of, once the beam hits the target (ie the tumor), it dissipates, vs the Photon therapy beam, which, after hitting the target with full intensity, continues on past that target, exiting the body at a reduced intensity, but still subjecting good healthy tissue to radiation. The Proton Therapy doesn't have to exit the body after hitting the tumor.
So, I signed the paperwork and we initiated the process of getting insurance approval. Before deciding on Proton Therapy I had reached out to my insurance company Anthem Blue Cross Blue Shield to see if the procedure (3 specific procedure codes, CPT codes 77522, 77523 and 77525) are covered by my high deductible insurance plan. They assured me that the procedures are covered.
So it was VERY surprising when I received a call from Emory stating that Anthem BCBS had denied funding my treatment because it was "medically unnecessary". Specifically Anthem indicated that:
Medical studies have not shown that PBT (Proton Beam Therapy) is better than other treatments for this type of cancer. Therefore, PBT is not medically necessary. We used Carelon Medical Benefits Management Clinical Guideline titled Proton Beam Therapy to make this decision. You may view this guideline at www.carelon.com/mbm-guidelines-radiationoncology.
According to my favorite AI, and every Proton Therapy provider out there:
Proton therapy is more precise, potentially reducing side effects by sparing surrounding healthy tissue
Of course, it's also much more expensive than Photon Therapy (IMRT), which I believe is unfortunately driving Anthem's decision more than the better chance of sparing surrounding tissue and increasing post treatment Quality of Life (QoL). That's strictly my opinion, and the opinion of everyone I've talked to that has already had Proton Therapy.
I do have a cancer, which is located in locations that are right next to tissues that we don't want radiated (or at least as much) so, considering Emory touts QoL all over their messages and marketing for Proton Therapy, I figured they'd be able to talk Anthem into covering the process. BTW, Anthem claims to be concerned about the resulting QoL from treatments too, but that hasn't been my experience. To their credit, Emory appealed my case twice, once with Anthem, and then once with a 3rd party company that Anthem uses called Carelon Medical Benefits Management.
Here's what Emory Proton Center says about PBT. They don't mention any body parts in the vicinity of my prostate cancer, but I suspect/hope that parts controlling my urinary, rectal and sex functions would be also be considered "sensitive". Changes to any of those part would definitely impact my QoL.
And because protons release most of their energy inside the tumor and then stop, they deliver no exit dose, unlike X-rays, which pass through the body. That means fewer side effects, especially for tumors near sensitive structures like the brain, spine, heart, or eyes.
Both appeals were denied with "PBT is not medically necessary".
And yet another surprising discovery is that the Emory Proton Therapy Center isn't actually owned by Emory. (https://emoryproton.com/what-is-proton-therapy/)
As of early 2026, the Emory Proton Therapy Center is owned by Georgia ProtonCare Center, Inc. (GPCC), a non-profit subsidiary of Provident Resources Group. However, GPCC filed for Chapter 11 bankruptcy in January 2026,
While GPCC owns the facility, all clinical care is handled by Winship Cancer Institute of Emory University and Emory Healthcare staff.
All this being said, I've decided to go with the External Beam Radiation Therapy (EBRT) offered by Northside Hospital. This therapy has a good track record AND they are located 20 mins from my house, vs the 1+ drive to Emory for Proton Therapy. Their beams can also be "shaped" to "paint" the tumor, so they only deliver the highest power radiation directly to the tumor. Of course lesser radiation will affect the tissues adjacent to the tumors.
Right now, even with Proton Therapy the Emory Dr indicate that zapping the tumor, due to its position right next to my rectum, would also damage the rectum. The hope is that the ADT I've just started (Orgovyx and Erleada) will arrest the growth of the cancer, preventing further spreading, but also possibly reduce the size of the tumors, allowing for some increased distance between the tumors and surrounding tissues/organs.
So I wasn't, and am still not fond of the possible side effects of the ADT, but in order to be able to get better access to the tumor, and only the tumor, we've got to shrink it. Today I began taking Orgovyx and Erleada.
In addition to the Orgovyx and Erleada I am continuing with my vitamin and herbal supplementation, essential oils and Ivermectin daily. I also intend to keep up, if not increase my physical regimen of strength training and cardio exercise.
The morning dose of ADT medicines will be consumed along with a healthy shake including Fusion superfruits (not shown), Mila, Chocolate Protein Powder, Greens, Focus and Beetroot powder.
I've confirmed with my pharmacies that none of these natural supplements have any harmful interactions with my medicines, and hope that they will help me to avoid the possible side effects of the medicine.
Be well, and stay tuned. :)
Tom
I started
