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Just found out I have PC, with Gleason 9 - Nervous/Worried

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Posted 1/16/2017 4:25 PM (GMT 0)
Hi everyone,

I just had my second biopsy and my Doctor called me last week with the result. I was told I have Prostate Cancer in the left quadrant with a Gleason level 9. I'm very worried because this is a pretty advanced stage. People keep telling me not to worry because their friend, uncle, cousin, etc has had it for years. I'm happy they are able to continue on but I believe I'm in a different boat since my level is advanced. My doctor actually said, "it's prett bad".

I'm a 45 year old , pretty healthy and active non-smoker, and social drinker. I have been trying to remain very calm because I don't want to scare my family ( who all know, but not fully understand). I feel great, strong and don't feel any pain. I'm. Trying to stay positive and hopeful but I have yet to see anything from anyone at my stage, that's why I came here. I have a CT scan coming up in two days but other than that, I don't know what's next. My son is 12 and we have not told him what's going on because we don't know yet and don't want him to start doing poorly in school.

Can someone with a Gleason level 9 or higher please reach out to me?
Posted 1/16/2017 4:34 PM (GMT 0)
Welcome to the forum. Gleason 9 , stage 4 here. I am six years into the fight. There are always new medications in the pipeline. One of my medications, Xtandi, was still in trial when I was diagnosed. I worked for five years while doing treatments (radiation, hormone therapy, Zytiga) and surgery. I finally retired because of age, not cancer. Your scans will tell more about your disease and what to do. We have a sort of G9 club here. Please know we are here for you.
Posted 1/16/2017 4:53 PM (GMT 0)
Faustmann, your reply just brightened my day. I felt as if I was in the dark by myself. It feels good to know there are others I can talk to. I look forward to hearing from you again as well as the others. I'll contribute what I can to be supportive and helpful to any and all.
Posted 1/16/2017 5:03 PM (GMT 0)
Hi Hope45 and sorry about your diagnosis. I'm another G9 here that is doing great 4.5 years after diagnosis. But I remember those crazy months after diagnosis when your world is totally askew. Believe it or not, it gets better. A few thoughts as you try to figure out what's up.

Not to get too caught up into terminology, but your cancer isn't necessarily "advanced." If your scans show distant mets then yes, it would be advanced. But if your PSA is below 20 (please let us know what it is), it's unlikely that it will show that. That's your first "gate" and you'll know a lot more about your diagnosis once you get those results. Here's to hoping for a clean scan!

However, your Gleason 9 does make your cancer "high risk," which means that the cancer cells are more aggressive and more likely to spread. Assuming no spread, you can cure G9 cancer and most guys choose to hit it hard with a variety of treatments, such as radiation and hormone therapy.

Unfortunately, there's not really much "one-stop" shopping when it comes to learning about various treatments. Urologists can tell you about surgery and radiation oncologists can talk to you about radiation. But even then there are different types of radiation and that can mean talking to more than one RO.

Where are you located? We might be able to give you some advice on who to see. Good luck to you and don't give up hope. You can do well!
Posted 1/16/2017 5:10 PM (GMT 0)
This is the club no man wants to join. However, the support available here should help you.

There are a number of topics in the forum regarding Gleason 9 diagnosis, and you should also look at the Sticky thread at the top of the forum.

Start reading, and please ask questions. Good luck.
Posted 1/16/2017 5:19 PM (GMT 0)
Welcome Hope45 and do have hope in this process.

I'm not a G9 but after reading posts from the G9 club it seems like many choose the "kitchen Sink" approach and throw multiple treatments at it but it all depends on the results of your scans, involvement, location etc.

Not sure if someone said it already but getting a second opinion on your slides is also prudent. Knowing exactly what's been found, where it is and if it has spread may point you in one direction or another for treatment.

It's scary at first but after you decide and begin the treatment process it actually gets better mentally, at least it did for me.

Post your stats, like how many cores, what G-level and percentage they were and results of any scans. Even your PSA history may be helpful if you have one. At 45 you may not have had many PSA tests.

Keep us in the loop - Jon
Posted 1/16/2017 5:26 PM (GMT 0)
Hope45, not a g9 here either, but we have plenty of G9ers who have done very well with treatments. Most important thing for you know is to get educated. Read the stickies, read elsewhere here. It will give you a lot if good questions to ask the numerous specialists in various treatments, that you should set up appointments with

Welcome to the forum, hope you stick around it will be very helpful and supportive for you
Posted 1/16/2017 6:10 PM (GMT 0)
Hello HOPE! Hope is a good handle, because there is always hope. I am the wife of a G9 very advanced. You can read Gary's stats in the signature. He is hanging in for 6 years now with a very poor prognosis. What was your psa? Generally the lower the psa, the least chance of metastasis. Bit you won't know for sure til after the scans. Do you know what the numbers are on your G Score? A 4+5 is better than a 5+4.
Your wife would find a supportive community here as well if she is an on- line kinda gal.
Keep us posted. The journey is one you haven't chosen and there will be tough times ahead, but being here and knowing how to deal with this and what you're up against will help you through. The folks here are so caring and compassionate. I'm always overwhelmed by the outpouring of love an understanding I've received on this forum.
Best wishes for good scan results.
Beth
P.s. You and your spouse might want to read the thread Letters to Newly Diagnosed.
Posted 1/16/2017 6:46 PM (GMT 0)
Hello Hope,

Hang in there. The initial dx is devestating because if you do not have any knowledge about the disease and the steps you can take to treat G9 prostate cancer ones imagination can get carried away.

I was dx'd with stage 4 G9 Jan. 17 2013. I researched many hours to try and understand what I was up against. It's a good idea to research because when a drug or treatment is offered to you having knowledge can prepare you to seek other advice or approve of the offering.

This forum has some of the most knowledgeable people I've come across. Even though they are not doctors they have vast resources to assist, support, and encourage you.

Someone will always answer your questions. Especially about the initial process to help relieve some of the anxiety a new dx can cause.

I'm sorry you have to be here, however you did find this forum and that was a very fortuitous start.

Best of care to you and keep hoping. New medications and many medications in the pipeline are available to treat you.

Your Brother in the fight.

Rick
Posted 1/16/2017 6:47 PM (GMT 0)
You'll know a lot more after the bone scan and CT. If it is "high risk" as Michael described, your odds of a complete cure using some advanced radiation techniques is actually pretty good. By pretty good, I mean that 4 in 5 men will be cured.

It is especially important that you send your biopsy slides to Epstein at Johns Hopkins for a second opinion. High grade PC is very rare in a man your age, and if it's some weird variant, that may change your treatment options. An expert pathologist like Epstein might see something different there.

When you get your bone scan results, please post along with your other diagnostic data, and we can all discuss this more fully.
Posted 1/16/2017 7:13 PM (GMT 0)
Welcome to HW, sorry you need to be here.

It's a shock to learn you have it. You're in that place where you need more info. Let us know what the scans say.

The best defense against the fear is to learn all you can about this PC thing. Even at G9, you have every reason to hope for a good outcome. There are plenty of treatments and every reason to hope that they effectively treat you. Normal will change, but you've got plenty of reason to hope.

We're here most days so ask all the questions you want, or just vent - we're good listeners too.

Andrew
Posted 1/16/2017 9:23 PM (GMT 0)
Hope,

Welcome to Healing Well. You've found a great place for support and information all things PC.

45 ... I can relate. I was 44 when I was diagnosed with Gleason 9...that was 7+ years ago. Doing great.

Hang in there and don't hesitate to use us. Feel free to email me as well.

Jerry L.
Posted 1/16/2017 9:57 PM (GMT 0)
Hope:

Plenty of support here. I, like you, am relatively young, athletic, active and a G9 (with a few 10s). I am 9 months into the battle and had advanced disease at DX. Once you get over the shock you will realize there is always hope and lots of good treatments for advanced cases. Hopefully, your initial scans will show no spread yet, but even if they do, lots of new treatment options. Stay on this site and engage. There is a lot of good information here. When you post, list your PSA numbers and other stats so others can help. Also let us know where you are located.

Good luck and try to stay calm for now. You will be ok.
Posted 1/17/2017 12:49 AM (GMT 0)
Hope45 - welcome to our forum. You're in probably the worst phase of this right now. As you learn, and as you get a treatment plan in place and underway you'll become more used to the new normal. I know those first few days it was hard to just keep breathing sometimes.

You've already found a great place here for support. We have a number of G9 folks here, and the mutual support is really helpful. We can help interpret what docs say, and sometimes offer questions to ask your docs. The guys here really helped me find my feet again!

I started a thread quite some time ago specifically as a gathering place for the G9 Crew, those of us facing this diagnosis. It got too long, and we started a second one from it. Our concerns tend to be more specific, maybe more "technical". I've added you to the roster. If you look through the thread, and the one linked before it, you'll find quite a lot of us here.

Just click on this link to go straight to that thread. Best of luck as you begin your journey, and we'll be here to support you. If you're ok sharing it, we can give you some better feedback if you let us know some of the diagnosis details.

The Gleason 9 Crew -- Part 2, continued.
Posted 1/17/2017 5:58 AM (GMT 0)

Hello Hope45,

We're here for you, starting right now !

We've got some common threads in our story ... I was also in my 40s, when I was unexpectedly diagnosed with advanced prostate cancer. So many of us say the same thing, "I had been healthy my entire life when I suddenly got the news of my health diagnosis ..."

I wanted you to know that there are several of us here in your same age range ... it's important to know that you are NOT ALONE IN THIS FIGHT, and we are here to encourage you and support you along the way.

As you find out more about your diagnosis, a treatment plan will certainly emerge ... it's important to form a close and trusted bond with your doctors. My treatments began immediately upon my diagnosis ... and my treatment history is revealed beneath my signature on this post.

In my case, I needed to walk out onto the treatment battlefield, with very little preparation or warning. My family, friends, work colleagues, and community members encouraged me tremendously as my treatments began ... my doctors have been a Godsend to me ... and over time, I have experienced some very meaningful successes from my medical treatments. I have a lot to be thankful for each day ...

I know what it's like to receive the news you just received, Hope45. I remember the sleepless nights ... the worries and anxieties. We've all been there, I assure you. The members here will encourage you and support you in incredible ways. Check in here often ... and you will experience the comaraderie and brotherhood and fellowship found here first-hand, each time you check in ...

This website represents a network of informed, caring, and compassionate members ... willing to share first-hand treatment experiences ... support for you ... a listening ear ... encouragement whenever you need it ... and an instant source of fraternity and fellowship.

We're fortunate to have members checking in here, 'round the clock, 365 days a year ... members that hail from every "neck of the woods" from across this country ... and very loyal members from across the globe, as well. Over time, the bonds emerge ... check in often, Hope45 ... this website is a tremendous resource and I'm thankful you've discovered it.

I had a case with some complexities when I was first diagnosed ... I, just like you, was also in my 40s when I was diagnosed ... quite unexpectedly.

I had a PSA of over 100 when I was first diagnosed, and my prostate cancer had already infiltrated both of my lungs by the time I was diagnosed. With that sobering news, I got started immediately on treatments ... fortunately, my treatments began to help me immediately. There's tremendous HOPE that emerges once your treatments begin ... you go into "warrior mode" ... you grab your silver sword and trusted shield ... and once you emerge onto the treatment battlefield, your fighting spirit will emerge.

I wanted to let you know that since we are in the same general age range, that you can keep LIVING LIFE TO THE FULLEST, despite the news you just received. My treatments began ... but my full-time teaching career has continued, without interruption ... I keep up with hobbies and interests ... I keep up with volunteer projects ... I still attend social events, as usual ... and I continue to exercise on a daily basis. It's all about continuing to live your life, just as you always have ... living the everyday MOMENTS OF LIFE ...

Since you are dealing with the news of a new diagnosis, I would like to encourage you to check out an informative and encouraging thread that several of us put together to help our new BROTHERS here who just received the news of a prostate cancer diagnosis. Up in the top right-hand corner of your screen, you will see a SEARCH BOX ... type in this thread title, as follows: LETTERS TO THE NEWLY DIAGNOSED. Click on that thread title once it emerges after typing it into the search box ... and read through the collection of letters that we have assembled for our newly diagnosed brothers who have joined us here on this website. I think you will find the letters helpful, insightful, and encouraging to you.

All of us here acknowledge that prostate cancer is now a chapter in our life's story ... and there can be physical and emotional side effects, of course ... but EVERY fellow here will also attest to the fact that prostate cancer is NOT the title of our BOOK OF LIFE ... and somehow, all of us find our pathway forward ... your fighting spirit will become your constant ally ... and soon enough, you will find this to be true in your life, as well, Hope45.

Other friends of mine have now been diagnosed with prostate cancer. When other friends of mine ask me what I have learned since I was first diagnosed, I always say that I have learned that there is no substitute for staying connected to your family, friends, and faith, in whatever form that takes for you.

I hope that you will find some hope and inspiration in the words I've shared with you ... some of the life lessons I have learned since the day I was first diagnosed with prostate cancer ... and more than anything else, I want to wish you the best as your treatments begin, Hope45.

Check in here often, Hope45 ... we'll leave the front porch light on for you !

Handshake of support from across the miles, from "one brother to another brother" ~
"Cyclone Team Fan" ~ Iowa State University
Posted 1/17/2017 12:47 PM (GMT 0)
Sorry you have to deal with a G9 grading. Others who have responded to you have given you excellent advice.

I will add mine:

-- Make sure you are properly diagnosed before choosing a treatment. I wasn't properly diagnosed at first. I was misdiagnosed as a G7 when I was actually a G10. Took me four months and several consultations and second and third readings to find that out. But when I did, I was able to make an informed treatment choice. The treatment I chose seems to be working (as in producing a cure), but of course I will not know for sure for years.

-- You probably will be channeled by well-intentioned doctors and others towards either radiation or surgery. There are alternatives. You might consider exploring those before making a treatment decision.

Good luck.
Posted 1/17/2017 3:49 PM (GMT 0)
Hi Boon1. I missed your entry to the forum with a G10. I hope you're doing well. I've added you to the G9 Crew thread, since I've tried to keep track of the similar-risk G10s there as well. No doubt you've already explored that thread, but for what it's worth here's a link to it. I've found only six G10s on the forum, going back to about 2011. That's an exclusive group!

The Gleason 9 Crew -- Part 2, continued.
Posted 1/17/2017 3:53 PM (GMT 0)
Wow, so much knowledge and positivity here. I'm so grateful something drew me to this forum. Thank you all for the comfort and kind words. I each and every one of you nothing but the best in your own battles against this disease.

I reached out to my doctor and was able to get my PSA scores.

10/09/2013: 4.5
12/09/2013 4.7
01/08/2014 4.7
08/07/2015 10.9
05/09/2016 14.0
08/14/2016 16.3

These score are from my General Practitioner. I'll request my biopsy details from my urologist.
Posted 1/17/2017 3:55 PM (GMT 0)
I'm in Northern California, the San Francisco Bay Area. I was diagnosed at Kaiser.
Posted 1/17/2017 4:16 PM (GMT 0)
As stated above, a Gleason 9 represents aggressive cancer but
does not mean advanced. Your PSA score was high for your age in 2013. Why in my he name of HE double hockey sticks was there not a biopsy then. I would be screaming my head off.
C.T. Scans, bone scans, and MRI's will reveal if the cancer has spread. If it has spread then You can consider yourself having advanced disease. I would be very angry if nobody referred you to a urologist in 2013.

Having said all of that, there is still hope for many many years despite this diagnosis. For lack of a better word, life is going to kind of suck for the
Next few weeks. I encourage you to find the best doctors Kaiser has to offer. I kicked Kaiser to the curb this year after 10+ years of fighting with them to get anything done. I can't complain too much though, they got me this far. Keep us posted.
Posted 1/17/2017 5:23 PM (GMT 0)
Hope45-

Are you restricted to Kaiser doctors? There are some top-notch doctors I could name at UCSF and Stanford - will they let you go outside Kaiser for a consult? for clinical trials?
Posted 1/17/2017 7:19 PM (GMT 0)
Hope,
I already posted earlier, but wanted to let you know we are Northern CA too!
Beth n Gary
Posted 1/19/2017 3:21 PM (GMT 0)
I Apologize for my posts being kinda choppy but I'm trying to provide as much as I can during my breaks at work, while on a tiny screen. I still need to follow up with many of you. I do plan on leaving Kaiser to be able to see doctors at UCSF, Standford, etc. (thanks)

I just had my 1st CT scan last night and waiting on results which should be in today.

Here are my Gleason scores:
A) Prostate, RIGHT APEX: 4+3=7
B) Prostate, RIGHT MID: 3+4=7
C) Prostate, RIGHT BASE: 4+3=7
D) Prostate, LEFT APEX: 4+5=9
E) Prostate, LEFT MID: 4+5=9
F) Prostate, LEFT BASE: 4+4=9
Posted 1/19/2017 5:17 PM (GMT 0)
Hello, Hope!

Welcome...but sorry you have to be here. My DH is also a GL9. He's been through both surgery and radiation with ADT, after which, his PSA continued to rise. Although there doesn't seem to be a "cure" for him, he is doing very well. He works every day, tinkers with his "toys", and goes on grand adventures with our grandchildren (backyard camping just this past weekend). With continued treatment, we're expecting many, many more awesome years.

There are lots of options for treatment and lots of new ones in the pipeline. If you get a chance, read Todd1963's blog. I think there's a link in his signature. He has survived and thrived with very advanced PCa for 10 years, I think, and is still doing very well.

Gleason 9 is not something to take lightly. But, it's not necessarily a death sentence, either. Best wished to you and your family.

Donna
Posted 1/19/2017 7:18 PM (GMT 0)
Redwing, thanks for adding me to the G9 thread. As you note, there aren't many G10's on the forum. While the G10's might be an "exclusive" group, I do not find that exclusivity at all reassuring!

But I suspect there are quite a few undiagnosed G10s around, given the truncated biopsy process through which so many go. I started out diagnosed as a G7. It was only when I had an 85-core mapping biopsy that the tiny G10 tumors were found. At that point, I knew I had to look not at traditional treatment such as cutting, burning, or poisoning, but for new approaches that had, if successful, a good chance of preserving my quality of life. So far, so good, but it's early. Nevertheless, I'm optimistic. Good luck to all. Boon
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