Joint the pros..PC advanced

Not sure if I'm doing this right, but here goes. I was Dx with advanced PC last month. When I went into the urologists office he greeted me with " Its bad, its really bad"..what a bummer. More questions revealed I had 10 out of 10 samples of biopsy, positive. He said G9 close to 10. Now, I had a full body scan done a few weeks earlier, as the Uro felt I did have cancer. He was surprised that the pelvic and body scan showed no barium results. He felt with my biopsy, there should be some mets. He said I would be on HT (eligard) and 39 HT's. I will be seeing the oncologist Oct. 21st. This makes my aneurysms seem like a dark walk. Reading the stories from others here, I feel there may be a few years left. I could use some consolation, but am prepared for the worst. I am very healthy otherwise, weigh 163 lbs and fit also exercise regularly.

Dear Sixpacks,

We're all right here to support you, starting now. We can all relate to the day you heard the news from your doctor and we're all walking this path along with you right now. It takes some time to deal with the news, grapple with the medical treatments, and to find your way along the trail again ...

My initial PSA was over 100, with a diagnosis of prostate cancer that had already spread to both of my lungs. The news sent me reeling, so I can relate to your emotions. I started on treatments right away, and began to see results, which encouraged me greatly. I was just in my 40s when diagnosed, and had perfect health up to that point in time. I've been on ADT hormone shots continuously since my diagnosis, plus a round of Taxotere chemotherapy treatments, and now I'm on one of the new breakthrough drugs called ZYTIGA to control my cancer. Recently, I also went to Mayo Clinic in Rochester, Minnesota, to do some additional scans and to get a second opinion.

Over time, I've formed a medical team consisting of my original urologist, my primary oncologist, and now Dr. Kwon from Mayo Clinic. Adding an oncologist to my team was an important step in my treatment plan.

I want to send you some hope and encouragement right now. I am fortunate in that I've been able to keep working full-time each day and I have kept up with all my usual activities since being diagnosed. I'm heading towards my third Christmas since being diagnosed and I hope that hearing that is a strong message of encouragement to you right now.

This forum will provide you with feedback, care, concern, and SUPPORT right now. When you first get diagnosed, you need that --- we all need that. So posting your message here is your first step towards connecting with everyone here.

Remember --- we're all in this together --- we're all here to support you as you begin your journey --- and I wanted to wish you the best as you begin your treatments. Please keep in touch and let us know how you are doing and how your treatments are going.

Sent with my best to you,
Cyclone

Post Edited (ISU-CycloneFan) : 10/18/2015 3:50:27 PM (GMT-6)

You don't say where you're located, if you let us know, someone here may have some suggestions about specific specialists for you to look for in your area. The mantra "go big or go home" applies here. PC is a tough disease to treat because of anatomy, and true experts are needed.

You need to get yourself to a top-notch academic medical center, that falls in the "top regional centers" ratings. For your case, in particular, you need to find a place that has great radiation and oncology teams. Surgery may be an option, but at G9-10, you need a clear indication that the cat is still in the bag, as it were.

Guys thank you so much for your warm caring. Cyclone you almost had me crying when I read your post. It clear that there is always someone worst of than you and I should be thankful that I may come out of this ok, with your help...again thank you sooooo much.

Sixpack,
Just want to extend a welcome to our club, tough diagnosis, sorry you received it.
But one thing you'll learn here, is that hope is NEVER lost. Cyclone is a good example of that. And there are many others as well, as you'll see as you read through posts.

Best of luck in fighting the good fight, we all have different diagnosis, but we are all in this together

Sixpacks,
So very sorry to hear about your wife. And now your diagnosis on top.
My husband is g9 with most cores positive. Prostate cancer treatment has come a long way in the last couple years. We don't know exactly where we are yet (his first psa test after salvage radiation is in a week) but his doc says he's likely to have decades more of life. So dont panic.

There are lots of guys (and some gals also) who will be here to support you as you go thru this next journey. You will be in my prayers tonight.
Sophie

sixpacks- another G9 here. This month marks five years since my psa increase, leading to dx. Initially the bone scan showed no mets but I have bone mets now, for the last two years. My quality of life is good and I can work full time. I agree you should go to a major cancer facility for another opinion. My choice was MD Anderson in Houston. I am sorry you are here and very sorry about the way your uro broke the news. You likely have many years left with today's treatments. Take care.

Hi sixpacks,
I don't have much to add here but wanted to extend a welcome to you and let you know that you are not alone. As you can see, there are many G9 guys on this site each with their own unique case and each of us are doing a little differently. You will see from my signature that I also had extensive cores involved but my PSA was 187 at diagnosis. Although there were two suspicious spots on my spine, two independent biopsies could not find Pca in my bones. There have been three subsequent scans and none has found any cancer. The CT scans are a different story and have shown progressive lymph node involvement.

The point I am trying to make is to convince your doctor to treat YOU, not just your numbers rather than just dismissing you and telling you that its bad. Your cancer may be contained in the prostate and surgery would take care of it, or you may be locally advanced and radiation therapy may be your best bet.

Six - Luckily you've stumbled into a great resource site that can help you out. You by no means have a certain amount of time left.

I have two big suggestions for you..

First - stay positive. There will be days that you feel overwhelmed, that you will ask "why me"...those are normal. But plow through those days. There are great medical advancements being made every day.

Second - Get a second opinion. I see you are seeing an oncologist, is that medical? If not, find one. Now, cant tell you to dump your urologist, but his manner seems a bit off. They had some difficulty diagnosing me, when they finally did, I go into my dr's office. He starts off saying well this isn't what we thought, but we found it now. Then he looked at me, goes, oh yeah, you know this isn't curable right? well...that was my last appt with him :) My point is, be sure you are comfortable and trust your doctors. It's going to be a long journey, and you will see plenty of them, so make sure they are right for you.

Ok....well best of luck on your journey, please keep us informed of your progress and let us know if you have any other questions!

Jordan

Sorry Tall Allen a typo on my 39HT..should read 39 "radiation treatments". Now that was my Uro saying that as I will find out Wednesday as to my treatment plan, if I decide to go with her....thank you

Hi sixpacks. Sorry to hear of your diagnosis, and so sorry to hear about your wife. That's very hard. Welcome to our forum.

I'm another G9, 5+4, cT3, 6 of 12 positive. So, I kind of know the kick in the stomach that diagnosis feels like.

I've added you to our illustrious G9 Crew roster, our newest member! Perhaps you've already found our G9 thread(s), set up as a meeting place for those of us facing this diagnosis. You will find a lot of great guys, as so many have already responded here, with similar situations, various treatments, and most doing pretty well.

Here's a link to our G9 Crew thread, and there's an earlier one referenced in there.
www.healingwell.com/community/default.aspx?f=35&m=3182035&g=3182504#m3182504

Tall Allen especially, and others here, are very good resources. All the best, and know that we're here for you. Ask, vent, complain, whatever. Most of us have been right where you are, and have great empathy for what you're feeling.

Jerry

Hi Sixpacks... Another G9, and a newbie, welcoming you to the site. Sorry you have to be here and very sorry to hear about your wife. I have learned that there is a lot of support here and great feedback when you ask a question. Sometimes getting an opinion from some of these guys going through this has been as good as talking to a doctor. Good luck and take care. -JR

Hi all. Saw my Uro today. Scheduled to start Eligard for 18 months and 2 weeks of Casodex on Monday the 26th. External beam radiation for 39 treatments starts 3 months after initial HT. Her plan fits in with my expectations and she says I could go 10 years.I feel good about it. thanks all will keep in touch. by the way, if new stuff comes up, do I start a new thread or stay on this one???