Newly diagnosed 47 Year old...

Hey all,

I was diagnosed this week with prostate cancer
Intermediate stage.
8 positive cores
3 cores = 7
5 cores = 6
PSA = 4.2

I am flabbergasted, because I had no risk signs. I have been taking Testosterone supplements (very low testosterone in the low 200s since I was 38), which definitely contributed to the early diagnosis with PSA tests every 6 months.

The doctor said that Robotic Prostatectomy is the best and smartest choice given my age and health.

I am a healthy, fairly muscular guy and I am so worried that with testosterone dropping, that I'll become weaker and frail. That's my biggest fear.

What has been folk's experience with working out and lifting weights after the Prostate is removed? How long did it take to feel strong again?

Does it come back?

Jason, welcome to the forum. As Michael said, do you get a second opinion from Dr. Jonathan Epstein at Johns Hopkins. Many guys are upgraded or downgrade and Epstein is the gold standard in prostate pathology
This is standard operating procedure or you can just ask your urologist office to send the slides to Epstein at Johns Hopkins he will know what to do.

Also as Michael said you have many options. Talk to a radiation oncologist and specializes in also is Michael Sarina have many options. Talk to radiation oncologist specializes in SBRT Also known as cyber knife. Then talk to a radiation oncologist who specializes in Brachytherapy.
Then make an educated decision. I’m a surgery guy but I checked out all options first so that I know I was making informed decisions and wouldn’t look back matter what happens.
Then making educated decision. I’m the surgery guy but I checked out all options first so that I know I was making informed wouldn’t look back matter what happened
there’s no one right answer everybody is different and it’s a very personal decision.

As Michael said it would be 2 to 3 months at least before you could lift weights after surgery and I think even then you would have to observe limits f as Michael said it would be 2 to 3 months at least before you could lift weights after surgery and I think even then you would have to observe limits for a while or a while

As far as your question about whether It can come back? Unfortunately yes it can most guys with Gleason 6 and Gleason 7(3+4) Are cured after primary treatment. But some but some Eureka do recur. (I’m one) . But even then there are treatments that can still be curative.

I’m sure your head is spinning right now, try to relax and keep your thoughts and perspective. This is a very slow growing this is for most people, and with today’s treatment it’s almost always manageable as a chr i’m sure your head is spinning right now, try to relax and keep your thoughts and perspective this is a very slow growing disease for most people, and with today’s treatments it’s almost always manageable chronic disease for many years either the cage onic disease for many many years. Even decades. Even for life, till something else gets you,

Hang in there and keep us posted

By the way it would be helpful if you could create a signature to appear with your posts with pertinent information like the PSA, Gleason scores and updates as they occur.
To do that go to the very top of the page and click on my profile and There you’ll find a place to enter your signature

Welcome to HW. sorry you need to be here.

Now's the time to do your research. You have lots of options and don't need to rush into anything. Getting a second opinion is always a smart thing to do and checkout your other treatment options before doing one.

Surgery is a serious deal and likely will set you back awhile on weight lifting. 3 months is a minimum before you can really get back into, but your body takes a long time fully heal - expect 6-12 months till you're back to your post op levels.

Ask all the questions you have, we're here most days.
Andrew

Welcome to our club that none of us volunteered for. I'd offer my added suggestion as others have said to get your slides out for a second opinion from Johns Hopkins--they are the best. With that information, you can make a serious plan.

The good news is, that you have (some) time to research your treatment options and make a well thought out decision. The bad news is, that you have time to dig and go crazy with the digging.

A few steps to take...

As Pratoman suggested, build a signature for us to refer to, it helps us remember who is who. If you didn't get written copies of your biopsy report, get one. Include the information in your signature--it's important to know whether your G7 cores are graded 4+3 or 3+4.

Also, let us know where you are. Where is home? Maybe we can steer you to the experts who are near you. It's important for you to find the really experienced teams near you. They are usually in the major hospitals. If you don't know where to start, google search for "NCCN centers of excellence"--these are the top notch hospitals all over the US.

Your urologist suggests surgery. Well, he's a surgeon, and that's what he knows. I'd also second the suggestion that you talk to one or more radiation experts about your case. They can explain the radiation treatment options and their pros and cons, much better than a surgeon can.

If you're married, take your spouse with you to appointments if you can. Get a notebook to write down questions and answers. Get a big folder to carry your paper in--you'll accumulate a lot of it.

And, try to relax. PC, at this stage for you, is not going to kill you. You need to deal with it, and you have every chance for a cure. Yes, cure.

Hi, Jason.

Glad to meet you, but sorry it has to be here.

The others can guide you well with regard to the learning process and choice of treatments. You can also read my posts from around July or August, 2016 to follow my process.

I'd also like to tell you that you haven't done yourself any harm by supplementing low T. I, too, was diagnosed with clinically low T while younger (long story, cause not important) and began supplemental T when I was around 65. My cancer diagnosis came at 68. My uro, as well as the first radiation oncologist I saw, recommended ceasing supplemental T. I thought about how I felt before supplementing, and I couldn't go back there.

To make a very long story short (again, see my old posts), with the help of my current RO I was directed to consult with Dr. Abraham Morgentaler (in Boston, affiliated with Harvard), as he has spent much of the past 20 or so years researching the impact of T on prostate cancer. He has published or co-published numerous studies dealing with the impact of T on prostate cancer. His "Saturation Theory" indicates that for many (most?) PCa patients, their T level has no impact on the amount, grade or progression of their disease. (May not apply to high risk patients, but neither you or I are high risk.) I won't try to write it all here, but do a web search on it and you can read the journal articles yourself.

I ended up flying to Boston to be seen by Dr. Morgentaler. With his input, my local docs are managing my care. I have used supplemental T before, during and after treatment for prostate cancer. With your intermediate risk diagnosis, you might receive the same guidance that I did.

I suggest you discuss this with your local doc. If he is open to it, maybe share some of the papers and studies with him. You might eventually want to do as I did and go see the doc in Boston. He was willing to meet with me, examine me, review my biopsy report and discuss ongoing management with me. He also wrote a summary and opinion to my local docs, which they are using in managing my ongoing care. (Note that I have no connection with Dr. Morgentaler other than the doctor-patient relationship. Either I or my insurer paid all applicable fees and costs for my care.)

My own opinion -- if your doc tells you (as one RO told me) "We stop the testosterone. That is just what we do." -- maybe a different doc would be better for you.

I could go on and on, but the new board software is too laggy to type it all at once. If you want to go deeper into this issue, let me know and we will find a way to connect somehow.

Removing the prostate does not affect your T level. Neither does radiation. However, most radiation treatment is preceded by testosterone suppression, usually accomplished with a Lupron injection. Lowering the T to zero or nearly zero tends to make the cancer more vulnerable to the effects of radiation treatment. Surgery can be a good option but not if the cancer has spread beyond the margin of the prostate gland. If it has gotten out, the surgeon needs to take more tissue, which increases the likelihood of ED and incontinence. These are tough decisions! Do research now and ask questions of the doctors.

Research everything about the ED before making your treatment decision. There is a lot more involved with penil health than just ED after your nerves are removed. I was planning on nerve sparing RP. Nerve sparing is out the window if cancer has spread out of the capsule.

It's an emotional shock to learn you have to deal with cancer. Take time to deal with that emotion. The best way is to learn all you can about PC. You have every reason to hope for a positive outcome and for this to just be a bump in the road (big bump).

It can be overwhelming to deal with this, so take it a step at a time. Talk to a few doctors to understand your options and then make your choice. I think you'll find choosing to be the hardest part as sometimes there are no clear scientific measurements that make one treatment better than another. Sometimes it comes down to what you feel most comfortable doing.

Let us know what the RO says,
Andrew

Thanks for adding your data in your signature, including the additional info on your Gleason score...since your G7 is a 3+4, that puts you in the "favorable" intermediate category. Your chances of a cure are very good with that diagnosis. I'd still ask for the second opinion on the biopsy slides from Johns Hopkins to confirm that, but that's a bit of good news that we couldn't quite tell from your initial post. It also means you have lots of time to get this all figured out! Hope we can help.

I was diagnosed in 2007 with G-6 and had my prostrate removed robotically. To this date my psa has come 0, so I assume I am cured.

As to lifting weights. I was a avid lifter before surgery and still am today at 67. After surgery, I layed offf all lifting for 6 to 8 months just to give the incision near my belly button a lot of time to heal so I had no chance for a hernia. I did a lot of cardio to keep in relativelly good shape.

As to ED , I was very lucky in that I had none. The day after my catheter was removed, I had rock solid erections without taking any viagra, and still have them to this day. The only difference is that after my surgery, the mind to penis connection was missing.

Before surgery, I could get an erection just by thinking about sex, or looking at a naked woman. After surgery, I could look at a naked woman or think about sex 24/7 without any repsonse what so ever. Not until I had some sort of manual physical stimulation, could I get an solid erection .

The other problem I have is I ejaculate urine when I have an orgasm , which is a kind of different experience. But empting my bladder right before sex really helps alot with that, so I got use to it.

Hey Jason,
I haven't been here long myself, but have learned a lot. Sometimes I think maybe too much. I'm not as young as yourself, but not much older in the whole scheme of things. Kind of like yourself, mine was found out by accident, looking for a urinary issue. If that would have been found and dealt with, well I might add, I'd have not found out this early. It may have gone for years otherwise. Still haven't decided if that was a blessing or a curse. Also still haven't decided about my treatment plan yet either. We both have lots of thinking to do. Good thing is, we also have a great group of folks to ask questions.

Hello Jason,

I was diagnosed recently as well (49 years old) and would like to recommend you to get as much info as possible before making educated decision. If you do not have time to read books dedicated to PC then at least read the PC guide line in the link below:

https://www.nccn.org/patients/guidelines/prostate/files/assets/common/downloads/files/prostate.pdf

In addition to what everyone else said, I would add get a digital recorder and take it to meetings with doctors (you wont need it at a biopsy however :>) It helped me a lot to record my conversations with doctors so I could listen to them later. There is a lot to process mentally at the meetings. Even though my wife was with me, we found ourselves driving home asking each other, "what exactly did he say?". In one case we both thought he said one thing, but on reviewing the tape found that he said something else.

I've found myself going back and listening to it even several weeks later as I work through my decision process.

Also write down a list of questions before you go. Its easy to forget to ask something

Good luck and take your time with your decsion.