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Posted 4/18/2021 2:32 AM (GMT 0)
Recently informed I have prostate Gleason score 4+5=9
I have had both bone and body scans.
Waiting for Dr to call for my wife and I to have a consultation. I know I’m new on this site but would like to hear from others or someone In the know. Thank you
Posted 4/18/2021 2:45 AM (GMT 0)
Hang in there, people will respond tomorrow, provide more details if you can.

I was just heading to bed so this is short. We all know how you feel right now so be patient as you can and give us some time.
Posted 4/18/2021 2:59 AM (GMT 0)

SteveSwitz said...
Recently informed I have prostate Gleason score 4+5=9
I have had both bone and body scans.
Waiting for Dr to call for my wife and I to have a consultation. I know I’m new on this site but would like to hear from others or someone In the know. Thank you

that's a tough one man but you are in the right place. maybe while you're waiting get a second read on your slides, good luck to you.
Posted 4/18/2021 3:07 AM (GMT 0)
I am 67 yo
Been checked for PSA every 3 months the last two years
Posted 4/18/2021 3:32 AM (GMT 0)
Uggh

I am also a 4+5=9, and we are not alone!

The bone/body scan results will help with decisions.

If you post more info you will get tons of shared experiences. For example can you share your Psa history?. Seems like you have been keeping an eye on things.

What did the biopsy specifically say?
Posted 4/18/2021 3:34 AM (GMT 0)

Hello, SteveSwitz ----

We're all here for you --- we have members from far and wide ---- brothers united in the battle together.

We're here to listen, share first-hand treatment experiences, answering questions, providing encouragement, and offering advice, when asked.

When first diagnosed, it feels like a whirlwind --- anxiety, uncertainties, worrisome thoughts. We have all stood at the spot in the road where you now stand.

There's HOPE --- and more medications and effective treatments than ever before.

I had an unexpected diagnosis in my 40s ---- a case with some complexities -- and this is my eighth year of survivorship.

Hope is what I needed when I first received the news of my diagnosis, and that's the hope I share with you today.

To help you get started --- look at the current threads posted on your screen. Look for the thread entitled LETTERS TO THE NEWLY DIAGNOSED.

Click on that thread --- you'll see it on your current screen. Print off the thread, and start reading the letters.

Members here banded together to write letters to those facing a new diagnosis --- and the letters will lead you FORWARD, from that spot in the road where you stand right now.

We welcome you here, SteveSwitz --- we're here to support you --- and be sure to read the letters.

With my best,
CYCLONE ~ # Iowa State University
Posted 4/18/2021 12:45 PM (GMT 0)
SS - My signature is probably of little use as you are just getting started in this journey which is unique to each person. You will learn the abbreviations pretty quickly and there is a guide at the top of the forum. I was 66, just retired after 44 years of full time working, went for annual physical them boom, out went the lights for a couple of months after the dreaded “you should see the urologist” phone call after a PSA increase. It was the most depressing period of my life and my retirement planning was shattered.

It seemed that time had stopped. Doctor visits, scans, and procedures could not happen fast enough. Information came in spurts of good news, bad news then good news then some bad news and so on. I studied the disease hoping that the state of the practice would be advanced and straight forward since PCa had been around a long time and my 93 year old Dad had it 17 years ago. No such luck, it still is a confusing morass of evolving opinions and treatment schemes that have improved but have not settled on the “correct solution” for all patients. What works for one fellow does not work for the next person and so on. All cancer treatments have side effects that do not affect people the same so one person can’t pee and another can’t stop peeing after treatment. It is a total mess to figure out and leading institutions & medical associations publish all sorts of guide documents that seem to apply to everyone but your specific situation. They become out-of-date quickly also.

HealingWell is a great place to gain knowledge but it is an “Internet Forum” so you get what you pay for. At the end of the day, you have to sort through lots of opinions and information working with your doctors to make your own decisions. No one will make them for you so due diligence is your responsibility. There are no do-overs or looking back on decisions that will accomplish much so be patient and work towards the end goal for getting best treatment for your situation.

Since you have a high risk assessment, you will have to proceed diligently with this process over the next month or two. There are a number of “optional” items that you will want to line up including second opinions on your pathology and treatment recommendations. You should find the best cancer institution you can to provide an assessment of your situation. You should have an MRI if you haven’t to assess the location and possible local spread of the tumor and consider genomic testing on a cancer sample from your biopsy for RNA risk assessment. There are a lot of items to look after as your results start coming in and to discuss with your doctors. The CT scan and bone scan are necessary for higher risk cases but not particularly useful if they don’t find anything as their sensitivity is low and only discover obvious issues. It is great to get the call that the scans are clear but that is short lived as you still have to make treatment decisions.

Sorry to ramble, I remember those days well when my journey started and have tremendous sympathy for anyone with a cancer diagnosis. It is a tough time and my wife helped as much as she could as a cancer survivor but it is deeply personal to the one who actually has the cancer. Lean on your family and HW members for support as needed. You will be here in a few months after treatment looking back on this period wondering where the panic went. Time heals all.
Posted 4/18/2021 1:22 PM (GMT 0)
Hi Steve and Welcome to the Forum where no one wants to be! I think we can be of a bit more help if you provide for us:

(1) Your PSA history and why you were being tested every 3 months for the last 2 years.

(2) The results of any previous biopsies and, for your last one: total number of cores and for each positive core, the Gleason score, core location, and percent cancer in that core.

(3) The results of your imaging.

(4) Anything else of import your docs have told you about your cancer.

You should get copies of all complete reports (not summaries) for your records. Start a folder for them, as well as a list of questions to bring to your next visit. As you get answers, you'll have new questions. It's very easy to get distracted listening to one answer and forget to ask your other questions unless they are written down. Taking someone along to visits and consults is generally a good idea.

After your workup is complete, your docs should be able to give you some idea as to whether your PCa is currently confined to the prostate or whether the is evidence of metastases and/or local spread out from the prostate. This info can play a major role in deciding whether surgery is on the table (well, you're always lying on the table, so I should say whether it merits consideration) in addition to the radiation + hormone therapy route.

Your workup together with all the info you get from your docs, consultations, your research, and all other input, will let you come to a treatment decision based on your personal weighing of all factors. Two men with identical prostate-cancer profiles can easily come to different treatment decisions.

We're here to support you!

Djin, another G9 (4+5) guy
Posted 4/18/2021 1:25 PM (GMT 0)
Welcome to the site. Sorry to hear about your diagnosis but what you will discover is that: many of us with advance disease have been here for along time and are doing quite well. Wishing you the best and hope you find a treatment plan that works for you.
Posted 4/18/2021 1:44 PM (GMT 0)
Steve, you’ve gotten great advice here, not much I can add, just want to welcome you to the forum. One of the most important things you should do in my opinion, is get educated. U,timately, you will have choices, and the decisions will be yours to make. Learn from the doctors, learn from our experiences, but educate yourself above all.
Your diagnosis is a tough one to swallow, but it’s manageable, and with all the advances in PCa treatment over the last decade, chances are very good that you will die of something else, many years from now.
Good luck and keep us posted.
Posted 4/18/2021 3:54 PM (GMT 0)
We are all sorry to learn of your diagnosis. I have a couple of suggestions. First, your wife should accompany you on doctor's visits, and bring a note pad. Take copious notes. You might think you will remember it all, but you won't! Second, if your urologist recommends surgery, ask for a referral to a radiation oncologist. Be sure to explore all potential treatments, and learn about them. Good luck!
Posted 4/18/2021 4:08 PM (GMT 0)
My grandfather and my dad both had prostate cancer however passed away from other causes.
My PSA history up until 2 years ago was consistently 1.8 year after year etc
After my first jump my urologist thought it best to go every 3 months
I had incremental changes the last two up .5 and .65
My latest PSA was 4.4 with the Gleason 4+5=9
I was scheduled for a body CT only, and when the Gleason score was received the Urologist ordered the bone scan.

This was my first biopsy , 12 samples were taken with 5 positive hits all on the right side.

At this time I only have this information to share.

I do read all posts received from each person , I want you to know this.
Posted 4/18/2021 5:52 PM (GMT 0)
Steve, the diligence of you and your uro point to the cancer having been diagnosed early (although your family history could have prompted an even earlier baseline biopsy when your PSA first began to climb from a steady 1.8).The biggest gun in the arsenal against serious PCa is early diagnosis and treatment! With a bit of good fortune thrown in, this may pay you nice dividends in terms of a successful treatment outcome.

Djin
Posted 4/18/2021 7:01 PM (GMT 0)
Hi Steve, welcome to our world from another G9 guy. Sorry you have to be here, but hope we can help. The bad news is that G9 is considered a high-risk diagnosis. The good news is that even high-risk guys can do well--lots of success stories here.

There are many options on treatments and making that decision generally involves talking to two or more specialists. Be patient and learn to be your own advocate. There's a knowledgable group here and we'll help as we can.
Posted 4/18/2021 7:29 PM (GMT 0)

DjinTonic said...
Steve, the diligence of you and your uro point to the cancer having been diagnosed early (although your family history could have prompted an even earlier baseline biopsy when your PSA first began to climb from a steady 1.8).The biggest gun in the arsenal against serious PCa is early diagnosis and treatment! With a bit of good fortune thrown in, this may pay you nice dividends in terms of a successful treatment outcome.

Djin

in other words he knew the risks when ordering 3-month PSAs but really didn't act on it with any urgency
Posted 4/18/2021 8:17 PM (GMT 0)
F8, and for comparison, in my case I had years of PSA with a non detectable baseline, and it was 3 annual increases before I had a biopsy (<0.1 then 0.6, 1.5, then 3.0) each a year apart. It's not uncommon to wait for biopsy until there are successive slow steady rises.
Posted 4/19/2021 1:06 AM (GMT 0)
Halbert, If I had agreed with my URO and waited until there was successive a slow steady rise I would have been at least T3b and maybe T4 IF it finally occurred.
Posted 4/19/2021 10:58 AM (GMT 0)
Hi Steve Switz yes as the guys have said you have just gotten hit by a big truck and then backed over as this is what it feels like when you get this kind of diagnosis. One of the most important things I believe and I advise the new guys is for you and your family to become your own advocates, this means finding the very best team and yes it will be a team of doctors and hospitals or cancer clinics, deciding on the best treatment that works for you and your family. This is so very important especially for higher gleason numbers like you have gotten. Some of the guys recommend that you send your slides to Epstein for a second opinion. There are lots of us guys here that are gleason 9 guys that can relate to you. PCa will change your life as you will discover that's why it is so important to get family involved and to make sure you have a top notch medical team.. You don't have to make a decision tomorrow but will need to in the near future. As hard as it is to believe some of us have in a way almost have been glad we have gotten this cancer as it has allowed us to see things a lot differently and spend time with our families and realize how precious life is and to make the most of it. For the last 4 yrs I have gotten to help with my grandson and the last year with distance learning and all the craziness in the world as the commercial says this is priceless. I will also encourage you to try to get in the best shape that you can as this will help during your treatments. Wishing you and your family the very best and keep us in the loop.

Larry
Posted 4/19/2021 12:08 PM (GMT 0)
Steve,
I was diagnosed about 3 years ago with a 4+5 (later downgraded to 4+4.) I echo what others have said about seeking out the best medical team and getting multiple opinions before making a decision on treatment. I relied heavily on my network of friends, family, doctors, counselors, and others to help me make my way through the treatment process. I wish you only the best on your path.
Posted 4/28/2021 11:10 PM (GMT 0)
First I was to thank all of you who responded to me after my original post.
Due to high risk from a recent prostate biopsy, I have a scheduled
Radical Prostatectomy (Complete prostate removal) Monday May 24
Supposed to be an overnight go home the following morning
Robotic surgery
This was my plan and my urologist agreed with me
Again,, Thank you

I am ready to Get R Done
Posted 4/28/2021 11:29 PM (GMT 0)
Good to meet you, sorry you have found us. Lots of great advice posted to you so far. Just to follow up on our friend and awesome poster Cyclone-ISU, take the time to read these "Letters for the newly Diagnosed". Lots of hope, healing and consolation to be found there.

https://healingwell.com/community/default.aspx?f=35&m=3675218

Keep the faith
Wings
Posted 4/29/2021 2:24 AM (GMT 0)
SS - Glad you made your decision. Now is the time to start getting ready for your surgery with less than a month to go. You will want to be in good physical shape, following a healthy diet, and start getting things ready for when you are released the day after surgery with a bag and tube in your hand. The best single item to have is a comfy recliner chair at home as sitting in a hard chair will not cut it and sleeping in a bed will be difficult for a couple of days. Also make sure you have all the recommended wipes and ointments to keep things clean. Hopefully you have a wife that can help out as it is tough by yourself at first until you master the basics.

Now is also the time to start practicing the kegel exercises to strengthen your urinary control with your pelvic floor muscles. You need to do these multiple times a day, every day. The better prepared you are, the better your recovery will be. Last, walk, drink water, walk, drink water, etc as soon as you can. Coffee and alcohol will not be your friend for a while until things settle down.

There are lots of details and tips for surgery recovery that you can read or ask about. Most of this does not become obvious until after your get home and you start wondering what to do about things that come up. Like how do you get your underwear on and off with a catheter? Or sweat pants?

Good luck in May.
Posted 4/29/2021 2:49 AM (GMT 0)
Yes
Thank you. I’ve thought about the before and aftercare. I am looking at the Kreger exercises and I appreciate your knowledge and sharing
Posted 4/29/2021 3:52 AM (GMT 0)
From one Stephen S to another.....

If you do not already have a recliner, obtain one. They are rentable at many medical supply kinds of stores.
Posted 4/29/2021 4:11 AM (GMT 0)
Thank you
Yes we have XL recliners

Great thought from more than one response
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