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Posted 2/16/2016 2:32 AM (GMT 0)
Hello all,

I am new to this site and I am glad found it. I have been reading many of the posts and it has given me some sense of relief knowing that I am not alone battling this nerve wrecking situation. This is my situation.

I am 64 years old and have Type 2 diabetes which I have under control. Other than that, I am in fairly good health. After my yearly physical in November 2015, my PSA came back at 4.7. My doctor wasn’t too happy with the results so she referred me to a Urologist for a biopsy.

Results came back T2 with 2 out of 12 cores positive with cancer. My Urologist gave me my options. I decided to go with the da Vinci surgery. Surgery was a success and I am healing well. The day I had my catheter removed, my Urologist gave me the results of the pathology report. Needless to say, I am not a doctor, but the results have me on edge. Doctors don’t explain everything in detail. I am hoping someone can help me decipher my pathology report in layman’s terms. Here are my results:

-Gleason Grade: 3+4 Combined Score of 7.
-Extent/Amount of Involvement: Fairly Extensive In The Peripheral Portions of The Gland, Both -Extracapsular Extension: Present, In the Left Posterior Portion of the Gland, Towards the Base
-Surgical Margins: Positive, In the Left Posterior Portion of the Gland, Towards the Base, Over an Area Measuring Up To 9 Mm in Length.
-Seminal Vesicles: Right And Left Seminal Vesicles Show No Pathologic Change.
-Prostatic Intraepithelial Neoplasia, High-Grade: Present, Focal.
-Perineural Invasion: Present, Focal.
-TNM: pT3a, Rl.
-Periprostatic Additional Margin Tissue, Resection: Adipose Tissue, Showing No Diagnostic Change.

Thank you.
Posted 2/16/2016 2:43 AM (GMT 0)
Pete, welcome, sorry you found your way here, but it's a good place to be with a diagnosis of PC

With positive margins and extra prostatic extension, you'll need to keep a close eye on your PSA, and be prepared to take action if there is a meaningful rise.
There have been many men here who have had more aggressive pathology than you with no subsequent rise after a long period. This is a crazy disease and it's unpredictable, you may well go the rest of your life with no sign of recurrence.

The good news is that with a G7(3+4), the cancer itself is not very aggressive, considered low intermediate risk.
At this point I would try to focus on healing and continuing to get well following the surgery. You'll know ore as you go thru your first few PSA tests
Posted 2/16/2016 2:52 AM (GMT 0)
Pete: Welcome, but sorry you need to be here. Others will weigh in too, but the one you want to weigh in on this is Tall Allen. As you are likely aware, the T3a does indicate that your PCa has escaped the prostate capsule to some degree, but your low PSA and relatively low gleason score weigh very positively on your side for effective treatment and a good outcome. Good luck, stay positive, and stay in touch.
Posted 2/16/2016 3:42 AM (GMT 0)
Welcome to HW, sorry you need to be here.

Kind of not the report you want, but could be worse. At your PSA level, it's likely the surgeon got it all, but there are areas of concern. The report suggests that some PC might be in areas that could cause concern that they didn't get it all.

Other than worry, there isn't anything you can do about it right now. So just heal up and move on with life. You're first post-op PSA test will tell the real tale. Worst case is that you might need some radiation treatment. Maybe, possibly, but not necessarily. It depends. You know, likely you're just fine or you might have to have more work done.

Hang on to the hope that they got it all the first time and get your PSA tests. Heal, enjoy life and save the worry for another day.

Andrew
Posted 2/16/2016 3:55 AM (GMT 0)
Thank you for your responses Pratoman and Northern Lights. My concern which scares the hell out of me is that my doctor immediately said that in 6 month we would go straight to adjuvant RT. I have read in other threads and you both tell me to watch my PSA numbers. My wife also tells me not to go through unnecessary RT until my PSA goes up. But what if by the time my PSA rises the cancer has already spread and it's too late?

On another note, how long till you regained your continence?
Posted 2/16/2016 4:05 AM (GMT 0)
Standard of care it to wait on SRT until your PSA starts to rise. PC grows so slowly that you've plenty of time to watch and wait.

Unless the surgeon said, get thee to the RO now, the plan is to wait. In any case, they wouldn't do RT until you've healed completely from surgery. I assume you had surgery recently, so likely it's too early for a PSA and far too early for anyone to consider sticking you in front of a radiation machine. Even if it was needed, you'd want to wait six months before starting it. Doing it now could cause more problems.

I realize the amount of anxiety and worry this must be causing. That's natural and we all went through it. It's easy for me to sit here and say, "don't worry," but I know how hard that is from your side of the screen.

Also, given your PSA and G7 score, it's unlikely that it's spread. Even if it has, there are plenty of treatments to deal with that.

and continence is all over the map, my brother recovered in a few weeks of surgery, but there are guys here who are never completely continent. Most guys are dry in a few months.

Hang in there, soon this will a just be a bad memory.
Andrew
Posted 2/16/2016 4:12 AM (GMT 0)
Hi Inthe Shop,

Thank you also for your support and advice. I wish I can stop worrying. What scares me is that I had absolutely no symptoms. I almost didn't go to my appointment. I am in good health and I figured I could wait till next year to go. My doctor made a good call by sending my to get a biopsy. I won't miss another doctor's appointment!
Posted 2/16/2016 4:26 AM (GMT 0)
Hang in there. This is all scary and world changing. Normal has changed and will keep changing for you. This whole PC thing is as much a mental/emotional thing as it is physical. Take time to care for your mind and spirit as well as your body.

In most cases PC has no symptoms until it is too late to do anything. You've caught it early and now, sadly, most of the side effects you'll suffer through will be from the surgery to cure you.

Do something to distract your mind from all this. Enjoy a hobby, a day out, a movie, good book, you wife, or whatever. Take this as a call to live life to the full.

but don't miss those appointments...
Andrew
Posted 2/16/2016 5:15 AM (GMT 0)
Thank you for lifting my spirits up a little!

Will keep in touch with progress!
Posted 2/16/2016 12:45 PM (GMT 0)
Pete, it's not the best news to hear, but definitely not the worst. Just concentrate on healing. Once the 1st psa comes back they'll have a better idea if or when you'll need additional treatment. Maybe never. Just know that secondary treatments are available, and they are not always devastating as some report. I recently completed SRT with no issues.
Posted 2/16/2016 2:14 PM (GMT 0)
Pete, I would be very hesitant to do RT in six months, if PSA was undetectable. I'm no expert, but I'd question the doc and get a second opinion before putting myself through that.

As Northern Lights said, Tall Allen is the guy you'll want to herpar from, he'll respond with science, and I'm sure he'll see your post soon.
Posted 2/16/2016 4:36 PM (GMT 0)
Some recent evidence shows that you can wait for evidence of rising PSA on an ultrasensitive PSA test before having salvage radiation. I know you're anxious, but a PSA before at least 2-3 months won't really tell you anything, and they usually wait at least 3 months to allow tissues time to heal. If that PSA is above 0.03 ng/ml, it is highly likely it will keep going up and then having salvage radiation sooner rather than later has better outcomes. If it remains below that level, you should feel comfortable watching it.

Did your pathology report mention the Gleason score at the positive margin?

- Allen
Posted 2/16/2016 4:58 PM (GMT 0)
Pete,
Sorry to meet up with you here, but you've come to a good place. Just as an FYI, I was PT3b with Gleason 3 + 4 and about 70% involvement on one side of prostate and partial involvement on the other side. That was 14 years ago. I had salvage radiation nearly 6 years ago. Though I'm now beginning to see some low levels of PSA again, I've nonetheless gone a long time since diagnosis and assume I still have many years to go if something else doesn't get me first. We are all different, so there are no guarantees. But even with a potentially aggressive PT3a you might still be going strong years from now.

Jim
Posted 2/16/2016 6:15 PM (GMT 0)
Hi Pete, not much to add from me, I just wanted welcome you to the site. You already got some great advice. Please keep us up to date. Take care. -JR
Posted 2/17/2016 6:17 AM (GMT 0)
Thanks to everyone for the great advice. I am feeling a little better. When i first got the pathology report, I thought for sure it was a death sentence.

Tall Allen, yes Gleason Score is 7 (3+4), positive margin
Posted 2/17/2016 6:20 AM (GMT 0)
Thanks to everyone for the great advice. I am feeling a little better. When i first got the pathology report, I thought for sure it was a death sentence.

Tall Allen, yes Gleason Score is 7 (3+4), positive margin
Posted 2/17/2016 6:22 AM (GMT 0)
I keep forgetting to ask. On the pathology report, what does the R1 mean in the TNM results?
Posted 2/17/2016 8:00 AM (GMT 0)
Welcome Pete
You have received great information. SRT will possibly be in your future. I am 11 months out from SRT. Surgery in October 2007. Current Psa is <.006. No real problems - grateful for the life and health I have. Be encouraged- keep us posted.
Posted 2/17/2016 6:57 PM (GMT 0)
It means positive margin.
Posted 2/17/2016 8:58 PM (GMT 0)

wierypete said...

On another note, how long till you regained your continence?

First, It's different for everyone. For me, I was about 80-90% continent right after the cath was pulled. Hard benches/stools tended to cause mishaps in the early days, plus some issues at night. I was back to pre-op status in about 3 weeks or so.

Keep doing kegels!
Posted 2/17/2016 9:30 PM (GMT 0)

wierypete said...
Hi Inthe Shop,

Thank you also for your support and advice. I wish I can stop worrying. What scares me is that I had absolutely no symptoms. I almost didn't go to my appointment. I am in good health and I figured I could wait till next year to go. My doctor made a good call by sending my to get a biopsy. I won't miss another doctor's appointment!

Pete, while I cant say this with 100% certainty.... I'm willing to bet a majority of us had no advance symptoms. I didnt. My detection was just a part of my routine annual physical. Thankfully my new doctor ordered a PSA test where my prior doc (who moved to CA) didnt feel the need to do one every year. Needless to say I'm a pain in the ass to my friends about getting physicals, including PSA tests. Hang in there, stay on top of things and you will be fine.
Posted 2/18/2016 3:48 AM (GMT 0)
Wow, its been 2 weeks since my cathiter was removed. I try and hold it but i leak all the way to the bathroom😟 i do my kegels during the day.
Posted 2/18/2016 4:14 AM (GMT 0)
Pete I got my cath out on 2-6 and I am having the same issues. Very frustrating to be honest. I come home from work dejected that I can't hold it and drip it seems like all day. I know I need to be patient but it's hard. I do my kegals and if I am sitting or in bed no issues.
Posted 2/18/2016 11:18 AM (GMT 0)
Something about Kegals that they don't tell you: It's possible to do too many and fatigue the muscles. I was told to do no more than 4 sets of 10 reps a day. The other thing to do is this: when you're getting ready to stand up from a chair (a common leak time), do a conscious kegal as you stand up.
Posted 2/18/2016 3:42 PM (GMT 0)
Pete,
I was about the same as you a couple of weeks after the catheter came out. By about 5 or 6 weeks I was pretty much in control, though I needed to wear pads for maybe 4 or 5 months -- mostly due to leakage when first standing up.
Jim
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