Not the results I was hoping for

Hello everyone. I would like to thank everyone that has responded to my previous two posts concerning my prostate cancer diagnosis. I did receive some results, not really what I wanted to hear. My nuclear medicine bone scan, my CT and my MRI all indicate my cancer has moved out of my prostate and into my pelvis, the Doctor said my cancer is at a "T4" level. The Doc also said I am not going to be cured of this cancer and surgically removing the prostate will not help me. The Doc wants to start me on a drug that stops testosterone production, he has advised me of the side effects. It has not yet been decided on what level radiation treatment I will receive and what level chemo I will receive. The hopes are slowing the cancer down. For all the hype about prostate cancer being "the good cancer" the treatment side effects are pretty rough.
I ended up having the cancer in 3 of the 12 spots tested, all at a 4+3 Gleason scale. I conclude that since the cancer has moved out of the prostate all that data I see others post really is of no value in my case, please correct me if I am wrong. I do have pretty intense pain in my hips (for the longest time this pain was explained as being caused by degenerative issues with my back). Treatment starts at the end of January 2015. I will hang in there. Thanks to all for the information, I certainly had been hoping that the cancer had not moved out of the prostate like it has. I am taking all test information to another Doc (my urologist is fine with this) for a second opinion.

Hey PCC Student.

Welcome to HW. I read your previous posts and do not understand a couple of things. If you fill in the blanks we might be able to give you more intelligent info.
You just had a biopsy with 3 cores (out of 12?) reading 4+3. Correct?
What was your PSA?
You have not had scans yet. Why does the doc say you are T4?

--- edit by me- I see that you just had the scans and they indicate it has spread. (I was reading an older post.)----

It would help if you put info in your profile so we can understand better.
I wish you well.
Jeff

Dang, dang and more dang. I think it's great that you're seeking another opinion and you might want to consider an oncologist that specializes in prostate cancer. Several of us here use Dr Scholz and his team here in Southern California, but there are other experts around the country. They can give you insights into the most leading edge treatments and research.

I'm also glad you're keeping a positive attitude. Despite your more advanced diagnosis, there's a whole lot that can be done to keep this at bay for a whole long time. Lots of success stories here as has been pointed out.

Good luck to you and let us know how we can help.

PCCStudent,

Urgh. Sorry to hear about that result. Do you know how many spots on your pelvis? Sometimes, if there are only a few mets good things can be accomplished by combining aggressive radiation with the hormones you are already scheduled for. Here's a link to a newsletter piece that talks about it: Oligometastatic Prostate Cancer

That's worth checking into but if you don't qualify there are lots of other treatment options, so not to fret excessively.

Do you have a "medical oncologist" on your team of doctors? You probably want to find a good one. The standard of care for T4 disease as provided by urologists is usually rather so-so. Your urologist can get you started on the hormones (generally the first step no matter what option you wind up taking) and that will hopefully give you some pain relief and will give you some time to find a good MO. If you tell us where you live (nearest big city) we may be able to recommend one.

Hi PCCStudent, Wanted to write some words of encouragement, because my father´s statistics were pretty much like yours, and he is celebrating 4th year since his diagnosis, active and enjoying life. As a side note, hip pain (especially if in both hips) can have many different causes. I don´t know if one radiologist has looked at all your scans, but find a doctor who can interpret them and see whether your hip pain is due to PC or something else. My bet is that it is not PC. With the combination of 3 types of scans, although never a 100%, you can get a good idea of what is happening.

PCC, I want to say to you do not get discouraged, and hang in there as you say. Those of us with advanced PC with Mets, can still get treatment with a good quality of life for many, MANY years, I've been doing that for two and a half years now, and that's what I plan on doing for many more. Get with a good, solid Oncologist team to help you make informed decisions, consider options, rely also on the knowlegible laymen here on Healing Well, there is also very good advisors at other sites, advancedprostatecancer.net with Chuck Maack and also Advanced PC Malecare group/forum with Joel Nowak.

So just Keep the Faith and surround yourself with support, we are all here for you,

 Dan in So Cal

Post Edited (Wings of Eagles) : 12/16/2014 3:56:47 PM (GMT-7)

PCCstudent,

Pratoman mentioned Todd. You need to read his story if you already have not done so. He was diagnosed in 2006 with Gleason 7 stage 4 with mets to lung, bone, and lymph nodes. He is on year 8 with an undetectable PSA.

His blog can be found at: toddseals63.blogspot.com/

That news is tough to take. I understand first hand. I got similar news years ago that my gleason 9 had spread to my pelvic bone...

But it's time to fight back and kick it back....Lots of options. But, I would get a medical oncologist to guide you and perhaps get a 2nd opinion. And of course, we are all here for you at Healing Well.

Where exactly on the bone mets?

Jerry L.

Hi, Sorry you got this news.

Therapy at the very least should begin fast and consist of androgen deprivation (ADT) generally Lupron with another drug for at least the first two weeks. This at the very least should be very soon, please don't hesitate on this part of the treatment if you can help it.

Taxotere in the beginning is a new protocol as well and I would recommend reading the NCCN guidelines on this and discussing with MD asap as well. Paul's oncologist hadn't heard of it when he was diagnosed in May but we sent her links she read and was more than willing to do this.

So may treatments to research and discuss, it will seem overwhelming but there are some amazing men and women on here to help guide you where to find the information you need to make informed choices and the best decision for you.

I do hope this doesn't dampen things for the holidays for you.

Check out Todd1963's blog. Very encouraging for those diagnosed with advanced PCa.
Wishing the best for your positive response to treatment and helping your hip pain.