New to HealingWell - G10 Diagnosis Last Year

Hello,

Have been lurking on this forum for a couple of months and wanted to relate my journey to date. Started with blood in my urine after a DRE at my annual physical week of Christmas 2012. Was on a project and out of town so went to local Urologist for symptoms. He performed PSA test, Biopsy and Bladder examination. Results came back with 1 sample at Gleason 10 with a number at 7. See my signature for the details. Upon diagnosis took slides to Cleveland Clinic (home) and consulted with Urology department. Decided on open prostatectomy due to doctors recommendation on the ability to conduct a greater examination if the cancer had spread. Pre Op scans were negative both CT with dye and Bone scan.

Operated on 3/4/13 and results showed seminal vesicle invasion and resulting biopsy of harvested lymph nodes indicated 2 right nodes with metastatic prostatic adenocarcinoma. 6 weeks after surgery PSA was 0.15, in consultation with Oncologist went on Lupron and Casodex. Also consulted with Radiation Oncology and went through radiation therapy for 35 treatments. Radiation profile was modified by markers in my stomach indicating where lymph nodes were harvested, higher in the right side.

So far PSA has been less than .03, tested every 3 months when renewing Lupron shot. Still on Casodex and treatment plan calls for Lupron to end after 24 months when we will monitor PSA along with testosterone rise.

Currently and prior to surgery have taken 5000 units of Vitamin D along with a number of of other natural supplements and am modifying my diet per Dr. Meyers recommendations. Have read both Dr. Walsh book and Dr Meyers. Cannot wait to stop the Lupron and may consult with Dr. Meyers on treatment plan to remain in remission.

Throughout all this I have had wonderful support from my wife and family.

Look forward to any and all comments and questions. Want to help where I can and learn more as I journey with you all through the challenge before us.

Spike,
Welcome to Healing Well.
We've got some similarities in our stats. Congrats on the great results and hope that it continues for you.
I'm sure you will find this forum to be a great resource for technical information as well as a place for support. It's also a great place to vent with guys who understand exactly what you are going through.
Take care,

spikem - if you have not already done so, please put your story on this thread dedicated to G9 and G10

www.healingwell.com/community/default.aspx?f=35&m=3182035

and read through its predecessor thread in the link you find there.

sound like you are giving the beast all it can handle and more.

LupronJim

Spikem- Thanks for sharing your story! Glad to hear you're doing better!

teedaalee

My brother and I have had our first visits with Dr. Myers. As you know, he doesn't take insurance but he provides a super bill and other information to submit for whatever reimbursement you can get from your insurance for an out of plan provider. He signed the forms. We haven't sent them in yet so I don't know what BCBS will cover. Medicines are covered in the regular plan, although Avodart isn't a preferred drug in my plan so it seems it isn't covered, or at least not until all the deductibles are met. Good luck to you!

You hopefully are getting various blood and urine markers done so as to monitor the disease, psa alone is not worthy enough (although is very useful post treatments, screenings is another argument on that front). A urine test like UnTx (or by other names, Pyrilinks D-?) is a sensitive test as to if you are having bone breakdown (aka- monitors mets happening in your body, once out of normal range levels it is accurate enough to tell you, hey you got mets somewhere happening). Other markers and tests are useful too, some are listed in Dr. Strums book(s) or others. You are at high risk for failing PCa and ending up in this mess, might take years and years and then again could become a short period of time (many variables in PCa's).

Hope you have or get a good onco-doc whom monitors more than psa levels, it is possible to have a low psa and have mets and damage happening (although it is more rare, but more common in high risk cases and like high Gleason scorings that don't necessarily give off much psa's to measure, sometimes).

Vitamin D3 is absorbed better than just regular D, from what I have heard, you can actually get a blood test for D3 levels in your body, Dr. Strum has a recommendation for levels for PCa patients in general.

Pay attention to future pains, could be years away hopefully or never, but if they show up consider investigating them early enough to treat them via radiation, it will rid the pain issues perhaps save someone from fractures or worse scenarios that are possible. (spinal collapse and such)

Best to your fight and question everything along the way will serve you well.