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Age 54 Gleason of 9. Psa 27

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Posted 11/16/2017 4:27 PM (GMT -5)
I am diagnosed with this and very scared. I have had many tests. It is not in my lymph nodes or bones. I meet with a oncologist on 11/27 to discuss my treatment options. I've read so many posts I'm very confused as to what to do. I'm a farmer by trade so I'm very active at this point and time and would like to continue. I'm a very big man 6' 10" at 350 pounds does size make a difference? Any advice would be very welcomed and thank you in advance.
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Posted 11/16/2017 4:39 PM (GMT -5)
I'm sorry you have to be here, but HW is a good resource. Please take time to consider your options. If the PC has not spread, it can be cured. You main options are surgery and radiation. Within radiation there are various options, so you need to take time to become educated and make the best choice. It's good that you are seeing an oncologist, not just a urologist. Better informed people will weigh in soon with more advice. I doubt that your size will matter.
Posted 11/16/2017 4:47 PM (GMT -5)
Welcome to HW, sorry you need to be here.

First, the answer to fear is knowledge. The more you learn about this the more you'll feel in control. I understand being scared, but PC isn't a death sentence and likely you'll still be farming next year, and beyond. PC is one of the most treatable cancers and you have every reason to expect a good outcome. It won't be fun and normal will change, but life will go on.

You have all the standard choices, surgery, radiation, etc. Honestly, I am not sure if size really matters that much for most of the mainline treatments. You doctors should be able to adjust to it.

So things to do: Drink a beer, enjoy a night out, watch a good movie, or read a book, then take a deep breath and dive into research. You have time to make an informed decision on what to do. Get a couple of second opinions on treatments - talk a surgeon, a radiation oncologist, and so on. Don't let anyone push you into a treatment. The trick is to find a doctor you can work with and are able to trust.

Checkout the stick threads at the top of the forum for more great information and ask any and all question you have here. Great bunch of folks here with lots of knowledge.

Hang in there, and we're here most days,
Andrew
Posted 11/16/2017 4:52 PM (GMT -5)
Welcome Bigmak!! to the club no one in their right mind wants to join ....that being said you have come to the right place for great information and there is a G9 group here that will welcome you also......I`m not the one you want to hear from ....just another guy that found this site when I was in the same place as you , but yes, with a lower G number . Still, all of us go through what your feeling and it`s no good ...granted . you need to have all the sex you can at this point ( if that is an issue)because you will most likely have hormone shots that will kill every last drop of desire in that dept....thats my input for you .....and others will be along soon to help out with much more than what I have said......good luck big guy ...we`re here for you .....David
Posted 11/16/2017 4:53 PM (GMT -5)
Thank you for the reply. I've always been able to fix anything but this is a lot harder to fix than a tractor.
Posted 11/16/2017 4:58 PM (GMT -5)

BigMak said...
I've always been able to fix anything but this is a lot harder to fix than a tractor.

Not a total DIY job - you have to take yourself to the service center for the repairs, but the factory techs will be able to fix you up just fine...

;)

but seriously, there are parts of the process you control. Just takes time to figure it out.

You'll get there. Keep asking questions.
Andrew
Posted 11/16/2017 5:07 PM (GMT -5)
Bigmak, I'm so sorry you're having to deal with this. This is a great place to get answers/information, and even to get talked down off the ledge when you're feeling crazy. I'm going to echo what you've already heard and tell you to educate yourself. This is manageable.

As to your size: my husband is 6'7". Not quite a big as you, but still a big guy. The only issue his size has caused is with scans. Sometimes, there are problems getting all of him in a scanner.

Donna
Posted 11/16/2017 5:08 PM (GMT -5)
Hi BigMak,
Sorry you are here but you came to a place where there are a lot of us G9'rs hanging around. Just to let you know, I was diagnosed at age 54 with a gleason 9 just like you and I am still hanging around. I have had lots of different treatments but today I am feeling good. Not the same as I used to but I am doing good. You have lots a different options available to you and if your G9 has not spread you can look forward to a long life ahead of you. Wishing you all the best.
Posted 11/16/2017 5:20 PM (GMT -5)
BigMak—
Just want to add my voice to the chorus of good wishes and support for you. Andrew is spot on when he says the answer to fear is knowledge. Sometimes it can feel like drinking out of a fire hose, so remember to slow down. The hardest lesson to learn when you’ve first been diagnosed is that you really do have time to gather information, ask questions, and make an informed decision. Deep breaths.
—SP.
Posted 11/16/2017 5:33 PM (GMT -5)
Big Mak,
Sorry you have to be going through with this. With a G9 and a psa of 27 you have to assume that it has already spread outside of the prostate. It would be highly unusual for a G9 in the prostate only to generate that much psa. Normal scans may not pick up anything at this stage and you would have to go with the more advanced PET scans or nano particle scans to pick up mets. You will most likely be looking at systemic treatments instead of local treatments which may include hormone therapy or chemo.
What options did your oncologist discuss with you?
Posted 11/16/2017 6:13 PM (GMT -5)
Hi BigMak
It is scary at first, but as others have said, learning about this will help. I kept a running list of questions between visits that I'd bring to my doctors and then make notes on their answers to help remember. I talked with several doctors several times to ask new questions and make sure I understood things correctly. My wife came with me to the appointments so I had someone with the same information that I could discuss things with.

As my doctor warned me, don't get too hung up with Dr. Google. Read up on things, but stick with reputable sources (like hospitals) and watch the date they were published. I found a lot of information has changed in 10 years.

Do you know anyone who has been through PC? I found it helpful to talk. And if not, there's always this board smile

When I made my decision I felt ready to do it, and surprised myself that most of the fear wasn't there anymore.

Good luck to you!

Mike
Posted 11/16/2017 6:25 PM (GMT -5)
Welcome Bigmak

I hope you don't get the same question my 6" 10" nephew gets everyday of his life: "Dang boy how tall are you?"It is usually at the cold drink section of the little store from some short guy looking into Ryan's belt buckle then scanning upwards! The second question comes next: "what position do you play?" Clarinet, I am in the band- lol On to your real issues, Where do live? It would be great to go to a tier one prostate cancer facility- with GS9 and PSA of 27 - I would want someone who treats more than garden variety PC looking out after me. I think you will want to find the very best doctors and facility to take care of what ever mode of treatment you decide is best for you. John T has made some good points about containment. That will have an impact on the type of treatment which will bring the best results. Aggressive treatment might include radiation+hormones+ chemo. You are young and active- you want to get as many years out of this as possible - if not a cure! stay engaged with your research and the knowledge available here. I am sure there will be opinions of where to go once we know where you live. In some aspects, it really does not matter where you live, if you can travel - you want to be with best doctor you can find that knows your type of case.
Posted 11/16/2017 6:35 PM (GMT -5)
Hey BigMak!

Reading about your work reminds me the father of one of my partners. The "old" man owns a large dairy farm in upper E. TN. That man is up a the crack of dawn to milk the cows....come hell or high weather....he's in his 70's. It can be 10 degrees at day break and he's out there tending to those cows. He has the same cancer. wasn't going down the primary treatment road. Just doesn't trust the medical profession. (I think he calls it the "big cancer money machine"). He's on hormones....but you'd never know it by his work ethic.

His distrust is so great....he tried talking *me* out of treatment. He's had this stuff so long...I don't think even he remembers when he got diagnosed....and just keeps on ticking like he's never been sick a day in his life. Anyway.....not trying to sway your thinking on treatment....just passing on one man's attitude.....and his way of living with prostate cancer.

Sorry...no advice.....just a story ...

take care

ps....that guy's stronger than I am....and twice as tough
Posted 11/16/2017 6:42 PM (GMT -5)
he's probably never seen a computer unless it was at his doctor's office. He's got a cell phone....flip style.
Posted 11/16/2017 8:07 PM (GMT -5)
I sure do appreciate the stories. There's no doubt I will beat this or go down trying
Posted 11/17/2017 11:20 AM (GMT -5)
From one GS9'er to another. Take some time to do your homework. There are plenty of options for you out there to beat this. Since we're not sure where you live, find the best facility you can afford to get to. It pays to get the best. The decision you may will affect the rest of your life. Arrange meetings with doctors experienced in both fields. Urologists are trained in surgery. They will usually recommend that course. But there have been so many changes in treatments with radiation, that you need to speak with radiation oncologists also. And both have similar success rates, but side effects usually are at different times. Surgery being pretty much immediate and radiation down the road.
When you schedule your appointments, bring someone with you and bring questions. There are some sticky threads at the top of the forum page and you'll find some great info there. Bring a notebook and keep notes. You don't want to be trying to remember what the doctor said. With a pretty high psa and a GS9, you may need to throw a lot at this. If it has escaped your prostate and is still in the area, this will more than likely direct your treatment plan.
This forum is a great place to get info. It is filled with so many people fighting this same battle. Make sure you ask questions here and learn which ones to ask at the surgeons office and what to ask at the radiation oncologists office. Educating yourself will be your greatest tool in the battle.
If you would, post some info about your DX in a signature. It gives some additional info to others who may be looking to give you some help or advice.
Good luck.. Hang around.. And ask plenty of questions and get educated on this battle and keep us informed.
Posted 11/17/2017 11:31 AM (GMT -5)
I have a appointment with Dr Zahara at the University of Chicago hospital. I live in the midwest. Has anyone else been treated by him?
Posted 11/17/2017 11:42 AM (GMT -5)
It seems like a safe bet that he will recommend 'hormone therapy' (Androgen Deprivation Therapy, ADT) at the outset. But listen carefully (bring a partner along, if possible) to the therapies that he will suggest. Is he a urologist/surgeon or a radiation oncologist?
As has been pointed out in the above responses (all good), that may make a difference in how he proposes to go forward.
I am sure that many here will be willing to respond once you report what Dr. Zahara has told you.
And, BTW, of the three prostate cancer forums that I visit, this is the best one!
Posted 11/17/2017 1:04 PM (GMT -5)
Would castration be better than hormone therspy so far as physical effects?
Posted 11/17/2017 1:16 PM (GMT -5)
I wouldn't go that route unless ADT wasn't effective any longer in suppressing your testosterone, I suppose it's a man thing. Castration is, well, permanent. Maybe you won't need a permanent reduction in T.
Posted 11/17/2017 1:32 PM (GMT -5)
If there's no evidence that the cancer has spread to the bones, you have a chance for a cure and you wouldn't necessarily need to take that drastic a step.

Even if it has gone to the bones, there's another post that just went up about someone that is having great success with intermittent hormone therapy, despite being diagnosed with bone mets seven years ago. In intermittent HT you take "vacations," which allows the SEs to go away for awhile before starting it back up.

That said, it's a personal decision and there was someone here that chose to do castration and was very comfortable with his decision. He even had implants put in so he could still scratch 'em when he wanted to.
Posted 11/17/2017 4:18 PM (GMT -5)
I was looking at side effects basically. Imy comfortable enough with myself that it's no big deal but the side effects from hormone therapy is quite long is why I asked
Posted 11/17/2017 5:11 PM (GMT -5)
Hi BigMak, sorry you need to be here, but glad you found us. I was diagnosed with Gleason 9, 5+4 at age 55, so I have some empathy for what you're going through right now. It sux.

You have a fight on your hands, to be sure. You're used to hard work, doing what needs to be done, taking initiative. This will involve a lot of that.

Stay with us, ask lots of questions. None of us are doctors, but all are either patients or partners of patients so we can offer our own experiences for what it's worth.

I've added you to the G9 Crew roster, a group of us with the Gleason 9 diagnosis. There's a thread (one of these forum conversations) there, with lots of G9 guys and links to a lot of their first posts. You can see what many others have considered, done, how they're doing, and so on. Here's the link:
The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

The good news is even though you may already have scared yourself by Googling too much, there is a lot of hope and most of us are doing pretty well. I'm personally now about 4 and 1/2 years after diagnosis, with a fully recovered testosterone level and stable PSA; a durable remission is definitely a possibility!

The side effects of hormone therapy are mainly due to the loss of testosterone, not so much from the drug itself. There is variability in that, and if you needed permanent testosterone suppression the surgical route is a good option. But it is obviously permanent, and you may not need that. I was on ADT for 3 years (most recommend around 2 now), but have fully recovered. ADT isn't fun, but you can do it.

All the best as you work through this. It's a little complicated.
Posted 11/17/2017 8:09 PM (GMT -5)
Thank you for your response. I'll keep everyone informed. Unless you are going through this nobody can understand.
Posted 11/18/2017 12:59 PM (GMT -5)

InTheShop said...

BigMak said...
I've always been able to fix anything but this is a lot harder to fix than a tractor.

Not a total DIY job - you have to take yourself to the service center for the repairs, but the factory techs will be able to fix you up just fine...

;)

but seriously, there are parts of the process you control. Just takes time to figure it out.

You'll get there. Keep asking questions.
Andrew

Well said! And welcome, BigMak, to our club, even if you were drafted into it. Though there are of course never any guarantees, you can almost assuredly manage this disease to result in a long life. Just remember that most of us PC guys- even those like you and me with the really aggressive PCs- die of something else before the PC can come close to killing us. Not all of us, but most of us. So you have some very good chances, reasons for a lot of hope.

The main thing you have to deal with is deciding which one of several treatment options- all with good possible outcomes but differing a lot in the possible side effects- is best for you. The trouble with these decisions is- at least in my case- emotion, and fear. That can make it quite difficult to make the rational choices when you might be getting conflicting advice from different specialists. Or from the non-physicians on the internet.

But do your best to avoid panic or excessive fear or other negative emotions(I know, easier said than done), so that you can do some research and decide what is best for you when it comes to better or equal odds of having long, cancer symptom free life and secondarily, with the fewest possible unwanted long term side effects. God bless you and good luck for you in your research! Ask away to the folks here, and of course, ask a lot of questions to your docs!
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