Our journey begins....

My husband has been dx'd with prostate cancer.
I will start with his history.

He is 56 yrs old. Always been healthy and never went to a doctor for routine yearly exams or tests.

Months ago he started with urinary and erection/ejacutaion sx's and as they increased he decided to become established with a provider. She drew numerous labs and DRE. Prostate was enalrged and PSA 140.

He was referred to a uroligist and was seen by him a few weeks ago. Uroligist was alarmed by the high PSA. DRE was done and prostate is hard with no irritation.

Discussion of possible cancer. He also mentioned the possiblity of bone involvement due to a elevated Alkaline Phosphate.

Flomax started. Prostate biopsy completed 5/11 and results given 5/30.

14 core, 14 positive. 11 had Gleason score 8, 3 had Gleason score 9. Per Urologist, cancer is advanced and time is important. Ct and Bone scan scheduled for 6/1.

Results of Bone scan positive in all large bones, CT negative showing only bone activity. ( I was able to read and view readings due to my work) Now we wait for follow up with urologist for results.

My husband is in a state of shock hearing the "C" word. What is ironic, I am a registered nurse but my specialty is Emergency Room medicine and knowledge of prostates is very limited.

Now I am trying to learn as much as I can quickly.

Since the prostate biopsy urination has become increasingly difficult. Flomax increased.

Only good news my husband feels good. This morning he played 18 holes golf.

We are reading How to Survive Prostate Cancer.

Any advice or suggestions are very appreciated.

Thanks
Donna

redhtz, welcome to our club that none of wanted to join. The standard of care for the G8/G9 cohort with known bone mets generally begins with immediate HT (Lupron) and chemo. Radiation can be used to zap spots on the bones. It might be a good idea to seek out a medical oncologist who specializes in prostate care.

If you tell us where you're located, perhaps we can aim you towards an expert near you.

Welcome to HW, sorry you need to be here.

That is an advanced case and HT is in his future. The advanced PC folks will be along soon with better info than I have.

We've had guys show up here with worse numbers and still be around for many, many years, so there is hope for keeping it at bay for years, decades. There are a lot of treatments and trails out there these days.

Learn all you can and ask all the questions you have - there are lots of knowledgable folks here.
Andrew

Welcome and sorry you have to join our club.

There seem to be established treatment protocols for advanced prostate cancer. There are people on this forum who are surviving quite well with Gleason 8 and 9 disease. Many will be here soon to offer their stories and advice.

Good luck.

Hi redhtz. Sorry you need to be here, but glad you found us. This is a really helpful forum, with guys here in a wide variety of situations. Almost no matter what's happening you're likely to find a few of us that can relate and maybe provide some support.

We have a thread for Gleason 9+ cases, and welcome to the G9 Crew (the least favorite chapter of a club no one wants to join!). That thread is meant as a gathering place for those facing these diagnoses. Our concerns tend to be more specialized in the advanced treatment options, so this helps us find one another. You'll find many forum members there, and links to their initial posts where I could find them. I've placed your forum name there already. It's organized by G10, G9 5+4, and G9 4+5, then by diagnosis date within each group. Here's a link to it:
The Gleason 9 Crew -- Part 2, continued.

As others said, we have forum members here diagnosed with very serious metastatic situations that are still doing well much later. Notably, our forum's Todd1963 had a PSA of 3200, widely metastatic, over 10 years ago. Today, he has an undetectable PSA! His situation is admittedly unusual, but there is definitely hope. No one yet can predict any single patient's course.

You're going through one of the hardest phases of this, the initial shock and struggle to come to grips with this situation; there's no candy-coating that, it's very scary. Once the treatment plan begins to gel, and once it actually starts things tend to become better. Engaging in the battle gives you a new focus.

Please stay with us as you work through this. We're here for you.

Donna,
MD Anderson is one of the top institutions for prostate cancer. Your cancer center that is affiliated with them might allow you to participle in MDA's clinical trials.

For multiple mets, docetaxel with ADT is the standard of care. Clinical trial results reported this weekend tell us that starting with Zytiga may be equally good, but that use is not yet approved. There are a few clinical trials for men in your husband's position: metastatic but still hormone-sensitive.

My top choice would be this one at NIH (free travel and accommodations) that combines docetaxel with a new immunotherapy called ProstVac:

/clinicaltrials.gov/ct2/show/NCT02649855

One of the best ones combines a new hormonal agent that may be more powerful than Zytiga, called apalutamide. There are trial sites in Arizona and Colorado:

/clinicaltrials.gov/ct2/show/study/NCT02489318

This one uses a well-known advanced hormonal agent, Xtandi. There's a site in Colorado:

/clinicaltrials.gov/ct2/show/study/NCT02677896

This one includes Xofigo, a well-known nuclear medicine that specifically attacks bone mets. You'd have to travel for this one:

/clinicaltrials.gov/ct2/show/NCT02582749

There is also a trial at MD Anderson in Houston that goes ahead and treats the prostate anyway, either with radiation or surgery, to see if this "bebulking" or "cytoreduction" slows down the spread.

/clinicaltrials.gov/ct2/show/study/NCT01751438

I suggest you send these links to your oncologist and tell him you would like to discuss at your next meeting (don't assume he knows them!). They are all excellent options, and some will give him access to drugs (like Xofigo or Xtandi) that he wouldn't be able to get until he is castration resistant, or drugs that are not yet available outside of clinical trials (like Prostvac or apalutamide). De-bulking is a very promising therapy, and may be done by some surgeons or ROs outside of a clinical trial, if insurance will cover it (UT Southwestern in Dallas has a registry).

Hello Redhtz,

You've found a caring corner of the world here, with supportive and informed members.

We're here to support you and your husband --- we're here to listen --- we're here to answer questions --- we're here to share first-hand treatment experiences. There's friendship, fellowship, and camaraderie to be found here, as well.

It sounds like you are beginning to wrap your minds around your diagnosis. It's tough at first --- the shock of it all --- and it can trigger a wide range of emotions.

I was also diagnosed with a PSA of over 100. I knew that my treatments needed to begin in earnest. My urologist got me started on ADT hormone shots and we began to see results, soon thereafter.

Within a couple of months, my PSA plummeted down into the decimal range. That gave me a lot of HOPE and ENCOURAGEMENT.

Your husband's treatments will begin soon --- and just getting some treatments started is a very encouraging feeling, believe me.

From there, I added a medical oncologist. I would recommend that your husband consults very soon with an oncologist who specializes in prostate cancer with complexities.

Adding an oncologist to my team opened up many new treatment possibilities. It was at that time that I also decided to pursue a series of chemotherapy treatments, in addition to the ADT hormone shots --- this allowed me to attack my cancer in TWO different ways.

The members here can share first-hand treatment experiences, once you get a "battle plan" established.

You're likely feeling like you are in a whirlwind right now --- tests --- scans --- waiting rooms --- appointments --- waiting for results. You and your husband are experiencing shock, anxiety, alarm, and worry --- a wide range of emotions. I remember those first days, after being diagnosed ... it's a roller coaster of emotions. I remember the sleepless nights ... the fears, the worries, the anxieties. We've all experienced what you and your husband are experiencing right now.

Once your husband consults with his doctors --- a PLAN will emerge. Treatments will begin ... and you will begin to receive support from friends, neighbors, work colleagues, community members, old classmates, and even the members here on this website !

Since your husband's PSA score is in the same range that mine was upon diagnosis, he needs to know there is hope. Please let him know that I have continued working full-time in my teaching career, ever since diagnosis.

I have continued to stay active --- I exercise every day --- I attend social events --- I work on volunteer projects in the community --- I have kept up with all my usual hobbies and interests --- I attend sporting events and community events --- and I have kept living LIFE, despite a diagnosis of cancer.

One thing I have learned, through it all ... it is important to stay connected to your family, friends, and faith, in whatever form that takes for you. Set your sights on the day ahead --- set daily goals --- keep facing forward --- keep up with your usual activities.

Since my diagnosis, several of my friends now have the same health concern that I do. These friends are from every chapter of my life --- hometown friends, one of my old college roommates, a church minister friend of mine, and a couple of work colleagues. I have a bond of friendship and brotherhood with each one of them and we check in with each other often.

You have EVERY reason to believe that your husband's treatments will begin helping him immensely. As I said, once I started on the ADT hormone shots, my PSA went down into the low decimals in just a few weeks. I was very grateful for that --- and it made me determined to begin reaching out to others.

Please let your husband know that many of us here on this website have ALSO benefited from new breakthrough medications and treatment strategies that have emerged in just the past few years.

Since your husband is newly diagnosed, I believe that you and your husband would find a lot of hope and encouragement together by reading one of the threads on this very website. Go to the top of your screen, Donna, and you will see the SEARCH BOX. Type in this thread title into the search box, as follows: "LETTERS TO THE NEWLY DIAGNOSED" --- you'll immediately find that thread --- print it out on paper, and sit down with your husband and read the letters together.

I think reading the letters will help you, encourage you, and help you navigate through this new chapter in your lives ...

My fellow "battle brothers" and I have a saying, and I'd like for you to share this with your husband, Donna. It is best stated this way: "A cancer diagnosis may now be a chapter in your life's story, but don't EVER let cancer become the title of your BOOK OF LIFE."

The members here check in 'round the clock, Donna. You can read other posts from the present and the past. You can post as often as you wish, and you can reply and contribute to other posts that you see. Members are checking in here 365 days a year !

We have members from all parts of the globe --- all with the collective goal of helping each other and lending support and walking alongside each other.

My advice to share with you today ...

Find courage --- seek solace --- stay focused on the day ahead --- celebrate everyday events --- keep facing forward --- form a strong bond with your medical team --- stay hopeful --- and most of all, STAY DETERMINED !

Here's wishing you and your husband the very BEST, as he begins his treatments. Check in here with us often --- let us know how you are both faring --- and remember that you've discovered a tremendous resource, right here on this website.

Handshake of support and encouragement, from across the miles,
"Cyclone" Team Fan ~ Iowa State University