Diagnosed on 9/11/2017

Diagnosed on 9/11/2017

Frankly, I'm 54 and before that, I thought I would live forever. Now they tell me maybe not. My Gleason Score is 49 and I've had a biopsy. In the doctors words over the phone "Oh yeah there's cancer everywhere". Since then I've been getting treatment set up and am just starting on Lupron. I had an MRI to see if I am a candidate for radioactive seeding. If not, I'll just do straight radiation with the lupron. In my other life I am an IT guy for the Olympic Coast National Marine Sanctuary. I and my wife live in the beautiful Pacific Northwest where we enjoy hiking and singing in a choir. I play many instruments including guitar and bagpipes.

15 Replies
oldestnewest

Your PSA is 49. You Gleason might be 8 - I am guessing.

''There is cancer everwhere" means "nowadays".

And get another doctor. Or think about it. The Hutchenson in Seattle is well known. Kinda far, but you dont need to go that often.

Lupron is good for a couple of months, while you ponder.

2 likes
Reply

Yeah. She's out of the picture. I have a team I'm satisfied with, just trying to come to grips with this dreamlike scenario. thanks.

2 likes
Reply

Ya, I thought that I would be able to scuba dive with my wife until we were in our 90’s. That changed when they found a rare type of cancer (Ductal) when I was 58 that has spread to my pelvic area (Stage 4D1, T3N1).

The most important thing you can now do is become your best advocate. Get used to the terminology, do literature searches (but try to read only legitimate ones. Sta away from wackos sights that say, for example, you can cure prostate cancer with maple syrup and baking soda).

Depending on how far the cancer has spread, surgery is still an option. Recent studies have shown improved long term survival with surgery over radiation, even it the cancer has spread to the pelvic lymph nodes. Make sure you talk to an Urologist that specializes in prostate cancer and is up to date, I had to present data to my urologist before he would operate as it had spread. Please note that you can have radiation after surgery but not surgery after radiation. (Radiation scars your insides to the point that very few surgeons will operate.) I had 38 rounds of radiation after surgery.

Two trials that were published this summer have shown dramatic improvement in survival by using a combination of Lupron with either Zytiga or a chemo drug. Please look up the Stampede and Latitude trials. I am currently taking Lupron with Zytiga (and a steroid). One reference is listed below: nejm.org/doi/full/10.1056/N...

Finally, please not that my comments are from a chemist, not a MD. Please feel free to ignore my and anyone’s else’s comments and go on your own path. However, please, please do your own research.

You have joined a special group of people here, both men and women. You are never going to be alone. We are all fighting for you! Stay strong!

6 likes
Reply

Thanks. My wife and I are looking over those trials. I appreciate the kind advice , Eric

2 likes
Reply

Goodluck eric i hope and pray you find the right team of docs, its definitely a shocker qhen you hear the c word but as they keep telling me its the best kind of cancer to have.. i have a gleason 8/9 iv had my surgery on nov 7th 2017 and im still recovering , i had an prostatectomy w extensive lymph nodes removal doc says he got all he can see but we will watch my psa for now .. i have a few more test coming up for follow up .. ERIC YOUR not alone talk talk talk about it , have faith and STAY STRONG ..

2 likes
Reply

Eric,

Check out this blog site "toddseals63blogspot.com" Todd also lives Washington, plays the guitar and sings, oh and by the way had a 3,000 plus ten years ago and is now undetectable!

Reply

Eric, Where are you being treated? I assume you have had to find an oncologist in Seattle. Is that correct? If you are not seeing one, you must do so. Do you know about Seattle Cancer Care Alliance? Several hospitals are presented there: U of Washington Med Center, Fred Hutch....

1 like
Reply

Yes. I think I am in good hands. I'm out on the Olympic Peninsula. So far I've had a surgical consult at U of W. Unfortunately the surgeon felt the cancer was out of the capsule. He also seemed to have concerns about my weight. I am seeing a very good, fairly young doc in Sequim named Jewell. My intitial consult with him lasted 2 1/2 hours. He was very energetic, very knowledgeable, didn't talk down to us and sounded very positive that he could get it all. We'll see. In January I am going to the Cancer Care Alliance to meet with a doctor who specializes in immunotherapy but I don't recall her name. The best part so far is that now with a new cancer center on the Peninsula, I don't have to be in Seattle every day for radiation, which I hope will start in February. I'm getting markers implated on Jan 5th her on the OP.

Reply

My circumstances arr a bit different, but I did robot assisted mastetectomy surgery. So far, though the cancer did break out of the capsule, two PSAs suggest we got it all. The leaking is a hassle so far (5 months +), but not hortible. My messages are: “listen” to the advice on this site (really helped me), surgery is a valid option, and do conduct your own research.

2 likes
Reply

I do hope you had a prostatectomy instead of a mastetectomy!

Reply

Only enough to be curious about what I found through Google. Do you have an explanation? Are you preying off of the sick? casewatch.org/fdawarning/pr...

2 likes
Reply

Sure sounds like it.

1 like
Reply

Dear Eric,

I am responding to your reply to my post to you. I assure you that the last thing in this world that I am about is to prey off the sick...and I sincerely apologize to you if something I said in my post caused you to think this or offended you.

About me ...as stated in my original post..I am a 10 YEAR Prostate cancer Survivor! ..so I know the ups and downs of this disease. Upon my original diagnosis ..and biopsy, I felt the deep shock and searching and wondering about what to do. so I can very much relate to what you are probably going through.

For me after a lot of careful consideration and speaking with doctors..I happened to find the website I mentioned..and chose after speaking with the site owner, reading the testimonials and talking to other men using their protocol ..chose to use the products. So long story short ..for 10 years I have and treated my cancer non invasively ..using the all natural supplements from this site and an associated sister site, and other alternative therapies ...along with a lot or prayer and faith I will add!. I have not used any radiation, surgery, medical hormone therapy or other traditional medical options. I can proudly say that my recent December PSA result came in at .5 !! My original PSA upon diagnosis was 14.4. So this has been a God send for me!

So I am a very real cancer ...and part of my paying it forward I do my best to point out to other men dealing with prostate cancer there is an alternative option to treat this disease ..if they so choose to.. without all of the potential gruesome side affects of invasive treatment that can happen. I have lived a pretty quality life to date in treating my prostate cancer ..I have no incontinence and have not been impacted that greatly sexually.

I hope this helps you . Blessings and prayer to you in your decision on your ongoing treatment Eric on this path in life for you. Sincerely....Dave

Reply

Oh I am sorry ..yes about the link that you mentioned...I can only say that I don't know all of the FDA technical rules and requirements....that they mentioned violations of. Upon reading it does sound concerning, and I don't know anything about reply or fixes potentially made by the site in response to this.

I can offer that I know the FDA is not thrilled at times with the success of products and companies that aren't intimately tied to the traditional medical community and big pharmaceuticals.

Bottom line for me, is that I can only tell you of my personal results with you about my use of their products...and they have worked very well for me as I stated..as well as for many other men as listed in their testimonials pages on the site

Reply

Dr. Kwon from Mayo treats metastatic prostate cancer successfully.

Reply

You may also like...