Just diagnosed scary: Hi folks, just... - Advanced Prostate...

Advanced Prostate Cancer

20,782 members25,890 posts

Just diagnosed scary

Jimbob9999 profile image
12 Replies

Hi folks, just got my results. PSA 164, T4N1M0, bone scan clear. Waiting for mtg with oncologist. Feeling a bit bewildered.

Written by
Jimbob9999 profile image
Jimbob9999
To view profiles and participate in discussions please or .
Read more about...
12 Replies
Dan59 profile image
Dan59

Hi Jimbo, Welcome to the group. Check out recent post by PJOshea , on current standards in up front treatment for advanced patients here> healthunlocked.com/advanced... As a message of hope , I was dxed 11 years ago with bpsa 148 M1B and LN , never had a clear scan ever, and that was before the new standards were approved. There has been an order of Magnitude change in how advanced prostate Cancer is treated in the last decade, and I expect the same in the next decade. Currently having your biopsy gene mapped at foundation 1, can help to know as much as you can about it and find genetic mutations that may have targeted meds.

I wish you the best, keep us posted on what you MO (medical Oncologist) says.

what was your Gleason score?.

Dan

Dayatatime profile image
Dayatatime

Take some deep breaths and although your world will change life will still exist. I was diagnosed on February 2016 with Gleason 9 and a PSA of 286 with pelvic and abdominal lymph node involvement. Today I have no signs showing in scans and PSA holding at < 0.01.

Educate yourself on the disease and your prognosis. My local doctors offered me only a part of what is out there in bigger research hospitals. I was told by several doctors I was inoperable until the Mayo Clinic thought otherwise. Never give up. Don't rely only on your doctors to make decisions. Be involved and ready for what course of action they are taking. 2nd and 3rd opinions by doctors that are specialist are very important. If none are available in your area buy a plane ticket.

The harder the cancer is hit early the better off you will be. This is the time to dig in and get busy with treatment. ADT and chemo are not easy treatments but they will knock cancer down and then it can be hit with a localized treatment such as surgery or radiation. The weaker the disease the better the result. This is where a specialist shines hopefully getting your PSA down low before local treatment is administered.

If you have any questions feel free to contact or email me. The initial news and treatment is overwhelming but stay strong my friend. This site is by far the most valuable I have found. Keep us posted.

Ron

Kevinski65 profile image
Kevinski65 in reply to Dayatatime

How can u get RP with advanced prostate cancer? All I got is Lupron and , after 2.5 years Xtandi. I also got Casodex for 2 weeks, and 2 yearly treatments of Zometa. I'm 5.5 years out. I can't get anyone to operate with a consistent 0.02 PSA. How would I get any other treatments , if the one I'm getting is working. Could I get provenge, surgery or chemo? How could I do this? Would Medicare (ordinary) pay?

Dayatatime profile image
Dayatatime in reply to Kevinski65

I actually sought several doctors opinions including a so called specialist from a large treatment center in Buffalo and was told surgery not an option by all. I was told It's metastatic disease and not much can be done other than standard of care treatment. I almost gave up but gave it one more try. I read and researched other options and found The Mayo, Sloan Kettering and MD were sometimes offering debulking surgery depending on the patient. I made a phone call, went through a series of scans and ended up in the care of an exceptional surgeon. I chose The Mayo because of their approach on oligometastatic disease, my insurance was accepted there and obviously they have a reputation second to none.

Facilities of this scale offer more than the average hospital. Not only did I have prostate removed, I also had an extended Lymphadenectomy with the removal of 42 nodes. I was 46 at the time and in good physical health. Mets to pelvic and abdominal nodes and bone scan clean. I'm sure the decision for surgery is based on age and current condition. Based on my experience I would highly recommend it.

I would also recommend contacting the Urology Department because from what I understand they tend to be more aggressive than the Oncology with prostate cancer. My story is in my profile if you would like to see it in detail.

As far as Medicare I can't say because I'm 48 now and still working. Just call Mayo and ask them. They were very helpful to me with insurance questions when I initially called for an appointment.

Ron

JamesAtlanta profile image
JamesAtlanta

Welcome to the group! We all know what you are going through ... since we all experienced the diagnosis.

Sage advice from the previous posts. I would simply offer a few thoughts:

1) There is a lot of hope. Many members on this site have lived 10-20 years with PCa and are doing fine. And as mentioned earlier, many new treatments are available and more coming. Think of PCa as a chronic disease that needs ongoing treatment.

2) Get a great oncologist who specializes in PCa. I have a local oncologist in Atlanta who is great for my day to day care. But I travel to MD Anderson every 6 months to ensure I get leading edge care.

3) Educate yourself so you can be an informed advocate for your own treatment. Read Dr. Patrick Walsh’s book - Guide to Surviving Prostate Cancer. It is an excellent way to understand the disease at all stages and to learn about the latest treatment options.

We are all pulling for you! Keep this group posted and I know you will get great support!

Apollo123 profile image
Apollo123

Hi I was diagnosed this year PSA around 30 Gleason 9 and pelvic and chest lymph involvement at the age of 47. The initial diagnosis is such a hard time but you will make the mental switch and start to fight! Learn all you can and read stories on this site, the men are inspirational and many have been fighting for 10/20+. We are all different and there are so many effective treatments. I’ve lost the over whelming fear now and have learnt to live with it. You will be ok and every year new developments are being made. Let us know how it all goes. 👍

BigRich profile image
BigRich

Welcome aboard! I second the previous posts. I only tell you the following to give you hope: the doctor said with your profile we are going to work on getting you 5 years, that was 19 years ago.

God Bless,

Rich

in reply to BigRich

Awesome big rich! Absolutely right. Don’t listen or live up to those bad stats they spout out. Fear is the enemy.

BigRich profile image
BigRich in reply to

Lulu you are correct fear cripples men. As you increase your knowledge of this disease and obtain good doctors you can achieve your goal to die with this disease and not from it. I am blessed. My other goal is to become a marathon man, 26 years.

I believe, I am going to make it.

Rich

dockam profile image
dockam

Welcome to the brotherhood - a group that no one wants to be a part of, but we are all here to share our successes, failures and to high five and commiserate. Do the research, get/stay fit. eat healthily and fight the good fight.

My story: Dx in 01/2015 with GL& (4+3), PSA 840 with mets to ureter lymph nodes. Started ADT (Lupron/Casodex) and did that for 30 months, did 15 Taxotere chemos in 2015 and with Metformin, Lipitor and a bunch of supplements (which I researched online) - I'm at 0.1 PSA! Check out my other posts for more details

Randy

Looks like it's time for you to slip on your ass kicking boots and get to work for the next ten years. Your life is officially different, adjust.

in reply to

Kick the mother down the road, and keep kickin!

You may also like...

Just Diagnosed with PC

then be meeting up with docs on 24th to go over results. Is a gleason 8 always gonna be stage 4?...

Prostate Cancer just Diagnosed

husband was just diagnosed with prostate cancer. It was found inadvertently when a PET scan...

just diagnosed; worried and unsure

age 79 is Just told I have aggressive prostate cancer; getting info from radiation oncologist which...

Husband Just Diagnosed

with him. I feel horrible and wish I could wave a magic wand to make him better. His PSA has...

Just Diagnosed. Suggestions Please

I have just been diagnosed with Advanced Prostate cancer, PSA 350.0 and several bone lesions. My...