Newly diagnosed also - dont' know what to expect yet (first post too)

Hello all.

I'm 55 and I just got the call that my biopsy came back positive. I don't know anyone who has had prostate cancer and, to be honest, I am scared. The timing of the call was the kicker... it came the same day I was eligible for full retirement - which I was going to take. Not now though.

Here's some background - I just turned 55 this past month, I'm white, weight about 192, pretty active outside and I think physically I was in pretty good shape. I do have high blood pressure, so about 2 years ago they put me on meds for that which took care of the issue but I started getting some ED - so we thought that was the cause.

The physicals in the past always were okay, at least with the finger test on the prostrate.

Then my PSA started to climb - not horribly, at least from what I have seen on the forum:

09/10/2015 13:51 SERUM 4.42 H
07/09/2015 13:37 SERUM 4.71 H
04/25/2015 11:42 SERUM 6.03 H
07/22/2013 13:42 SERUM 3.31

The DRE I had in 2015 came back abnormal, no nodules, only larger on one side. Only other things out of the ordinary is I have been looking tired and I have had night sweats for about a year now. I do have lower back pain but I'm not sure if that is connected as I was in a car wreck about 18 months ago where I was rear-ended.

So - they scheduled the biopsy and I got the call. Out of the 12 samples one came back with cancer:

DIAGNOSIS
Part # 1 - Prostate, right base, needle core biopsies:
- Benign prostatic glands and stroma.

Part # 2 - Prostate, right mid, needle core biopsies:
- Benign prostatic glands and stroma.

Part # 3 - Prostate, right apex, needle core biopsies:
- Benign prostatic glands and stroma.

Part # 4 - Prostate, left base, needle core biopsies:
- Prostatic adenocarcinoma, Gleason score 3+4=7
(Grade Group 2).
- Number of tissue cores involved: 1.
- Percent involvement: 60%.
- Number of tissue cores examined: 2.

Part # 5 - Prostate, left mid, needle core biopsies:
- Benign prostatic glands and stroma.
- Chronic Inflammation.

Part # 6 - Prostate, left apex, needle core biopsies:
- Benign prostatic glands and stroma.
- Acute and chronic inflammation.



My next appointment is not until the 22nd, almost 3 weeks away which is driving me nuts. I have read the "read this first" section and there was almost too much to digest there. The Gleason score of 7 sounds bad but the 3+4 part is the better option from what I read. This seems like it came on pretty fast as I thought prostrate cancer was a slow one.

I was hoping someone here would understand the 3+4 and grade group 2 data and perhaps have had experience with it, so I know what to expect – or at least get an idea of what are some possible options.

Thanks for any help.

Welcome aboard Cooper!

Man, we all know how you feel right know. Why me? I watch what I eat, exercise, do all the things I am suppose to. How did I get prostate cancer?

Don't try to evaluate it, it just is and happens to 1 of every 7 men.

Your numbers are good and very treatable. I am a Gleason 3+4=7 myself but I had 10 of 12 core positive.

As my urologist said to me, "from this point on, your life is going to change".

PCa IS very slow growing so you don't have to run out and pick a treatment plan right away. Ask questions, get a second opinion of your slides as Jay has said.

Sorry you had to join our club. Many of the guys and gals will be along soon to welcome you. We will be here for all your questions and venting is allowed on this forum.

Thanks Mac. Yea, it sucks. It doesn't run in my family so I was not really expecting to hear it was cancer.

Cooper, welcome to our club none of us wanted to join. You'll find a lot of answers. It's hard to believe, but you have plenty of time to evaluate options and make a careful decision. With 1 G7 core, there is no rush.

I'd also encourage you to have your slides sent to Johns Hopkins for a second opinion, you'll be glad you did. Having the best info available is key. Get a big accordion folder to keep your paper in, you're going to accumulate a LOT of it.

I don't know how the VA system works, but you've got great resources in Atlanta on the civilian side. Any of the standard treatments should work fine for you, and you might be a candidate for Active surveillance--where they basically watch it and do periodic biopsies to see what's going on over time. It might not do anything.

For now, try to relax. It's not a death sentence. Far from it.

Hello Cooper:

First, take a deep breath. You have time. Like you, once I got the results, the wait for my follow-up appointment made me crazy. What helped was educating myself on the disease. There are many books on the subject and, I hope this is allowed, the two that were (and continue to be) helpful to me are "100 Questions and Answers about Prostate Cancer" and "Winning the Battle Against Prostate Cancer". Eighteen months later, I still refer to them.

Second and even third opinions only require your existing information. Find other doctors and just bring them your results and tell them you are looking for a second opinion. But don't do this until after you have met with your primary guy. Btw, start a file and keep copies of everything.

During your follow-up, your doctor will talk you through your diagnosis and potential ways to treat your disease. Go in with questions and I would suggest bringing someone with you to help remember everything that was said. It can be daunting to have so much info thrown at you especially when you are in an anxious state.

Indeed, 3+4 is better than 4+3.

There is so much more but it takes time to absorb it all. Take heart that you are not alone. Read, then read again and start pulling your list of questions together.

Once more, you have time.

Joe

Let me add my welcome, although I'm sure you'd rather not be welcomed here! But based on your diagnosis you have every reason to think that you'll beat this. You've been given some great advice upthread, so I don't really have anything to add to it.

As I understand it, grade Group 2 refers to a way of using Gleason scores to broadly group different men's diagnoses. Out of the five grade groups, you're in the second one. (1 is lowest, 5 is highest.) Here's a link explaining this: http://urology.jhu.edu/newsletter/2014/prostate_cancer_2014_19.php

Just remember we're here to help. Good luck and keep us posted!

An interesting point on the second opinion, which I've addressed ad nauseum. I've had a second opinion fro JH and hopefully Epstein himself , I requested that...I could practically hear the laughter over the phpne....anyway.
Went from 3 cores, 2 3+3 <5%, 1 3+4 <5% out of 14 to 3 3+3 < 5% from JH. Talked it over with the two pathologists that did the original...looked a the slides with them on one of those fancy 2 person 'scopes as they explained the cell structure...not totally sure what I was looking at ,but sort of. Wasn't the firs histology I'd ever looked at. Bottom line...I'm going with the 3+4 and a 3TMRI Uronav biopsy.

Hey cooper...

Don't let the lower back pain and the fatigue scare you more than you already are. Alot of us "50 and 60 somthings" show up tired and hurting. Your diagnosis and numbers DO NOT indicate what you've probably read on the internet and are scared of.

It just seems that men tend to start hurting (for the first time in their lives) from aches and pains about the same age as prostate cancer is diagnosed.

In your case, I would highly doubt any of it is connected.

Be cool, breath and welcome aboard.

Peace

David

Cooper,
While I know it isn't easy, try to relax. As was mentioned earlier, you may be able to choose Active Surveillance for a while (maybe even a long while). Before I had treatment, I had a mapping biopsy that showed 15 out of 60 samples at GL6 and one at GL7. I don't know if I was group 1 or 2 because frankly, I've never even heard of that until I read your post. At any rate, I had LDR brachy 5 years ago, and have never looked back. I am 'cured' of the disease, and my sex life has never been better.
My point is, that there is indeed quality life after a pc diagnosis. Take your time to learn as much as you can about your situation before you make a decision that will affect the rest of your life.
Best to you, Brother

I just got off the phone with the urologist who broke me the news last week. I asked about a 2nd opinion on the biopsy as there's a leading cancer hospital in the area (Emory) who I was wanting to talk to. It turns out that was who did my initial pathology and the doctors at Emory work at both places. The one who had looked at my samples is a pretty well-respected doctor in the field. So, it was good that I found my results didn't come from someone not experienced. I'm still going to research out how to find another lab to give me something to compare to.

He also said this was genetic. There is no (known) prostate issues in the family. I have no brothers but the only cancer issue of any kind was an uncle on my mom's side who had colon cancer. All other men lived well into their late 80s and died of other things... mostly falling and breaking hips.

The doc also said I was not a candidate for "active surveillance" because of my test results, and there were two options that I should research before the next appointment: external radiation and robotic surgery.

The radiation option would be 5 times a week for 6-9 weeks and the robotic surgery would be for total removal. In both cases I would no longer have a prostate. The main differences would be with the radiation there might be problems with nausea & weakness and the urinary incontinence could take several months to show up, but with the surgery it would immediately show up. In both cases this may be resolved, in part or completely, over time through exercise and other means.

Man, this is a lot to take in.

And thank you all for all the help - I'm walking in a storm alone here and your replies are my only guiding light.

ED issues - no more sex after surgery or can one still get an erection through pills/injection? This is a concern but I'm going to be more upset if I have permanent incontinence.

cooper-

Once again - the second opinion must be from Bostwick or Epstein - they are the gold standard. This is because even in big hospitals like Emory, the pathologists must be able to read all kinds of tissue and fluid samples from every kind of disease. They will never be as good at reading prostate tissue as someone who only does that. They are the ones who wrote the book. Just tell your urologists to overnight the slides to one of those labs - you might have to pay about $200 out of pocket if your insurance doesn't cover it. It's worth it.

Your doctor is not well-informed as to all your options, which is why you need to be. You will have to make the effort to go out and interview doctors that specialize in all the other treatments that Jim mentioned. Then you will be able to make a good decision for yourself. This will take some time and some effort on your part.

As I mentioned before..you won't know for sure even then..the odds of changing the pathology are the same as the biopsy missing a more aggressive tumor. As to treatment, just google stuff, there are many papers referenced and they are not that hard to understand. Generally , it seems that the SEs are similar after surgery right away and after radiation 5-10 years..just when you think you've go it made. As you review the studies..you'll see that urinary incontinence can and usually is a serious side effect of surgery to some degree or another...on the other hand some studies note increases in rectal toxicity including rectal incontinence as a result of radiation. There basically are no good choices.