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Diagnosed with prostate cancer and worried!!!

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Prostate Cancer
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Posted 6/17/2018 10:05 PM (GMT 0)
Jon, two major myths that you have picked up. G6s don't turn into higher grades and they don't matastize to other parts of your body. They remain in the prostate. Most grade progression into a higher grade have proven to be new tumors.
There are many salvage treatments to failed radiation, most are radiation of a different type. salvage surgery or cryo surgery are available but not recommended.
The best strategy is to pick the best primary treatment without consideration of any salvage treatments.
Posted 6/18/2018 12:27 AM (GMT 0)
I don't know if this helps, but Tamim Niazi is using SBRT on metastases at Jewish General Hospital. I don't know if he is proficient at SBRT for the prostate, but it's worth a call. So many of the top radiation oncologists in Canada are in Vancouver or Toronto, especially at Sunnybrook. Of course, Klotz, the "father of active surveillance' is at U Toronto, but I know that his protocols have been adopted across Canada.
Posted 9/8/2018 3:52 AM (GMT 0)
Hi all,
Here is my update:
After researching for around 5 months, I decided to go with surgery. The surgery was done on September 5, my major problem now is nausea and acidity which is causing a lot of gas in my stomach. I’m throwing up everything I eat. Doctors gave me medications for this problem, but so far nothing helped. I don’t know how long this will last. Is this normal? Your advice is greatly appreciated.
Posted 9/8/2018 4:38 AM (GMT 0)
John-Can...

No. It's' not normal. Stay in touch with your doctor. I had that too. So it's not unheard of. If it gets worse or doesn't go away...make 'em listen to ya.

Don't be afraid to use the doctor on call. Your surgeon has doctors on call 24 hours. They're paid well to do this.
Posted 9/8/2018 11:09 AM (GMT 0)
In 2011, I was diagnosed with Gleason 3 + 3 cancer with 10% of 2 cores involved. I went for brachytherapy.

In 2016, second biopsy after PSA rise from 0.1 to 1.5 found cancer in extra capsular extension. This time I had cyberknife with ADT. Now in 2018, I have rapidly rising PSA from undetectable in January.

My mistake:

1. I did not have a second opinion on my biopsy in 2011.
2. Decided on a treatment without a second opinion.

Possible reason for my recurrence: Initial biopsy missed a higher grade cancer very close to the capsule that was not killed by brachytherapy.

My advise to you: Take your time and be on AS for a while. Later on, have a fusion biopsy. Now there are many advanced options open that were not there in 2011.

The bottom line is that the ultimate decision is yours.
Posted 9/8/2018 11:52 AM (GMT 0)
What you are experiencing does not sound normal at all. Talk to a doc asap.
Posted 9/8/2018 2:16 PM (GMT 0)
Nausea can be a common reaction to anesthesia after a long surgery. But it shouldn’t last that long. I would agree with island time, make your Drs listen
Posted 9/18/2018 10:59 PM (GMT 0)
Dear All,

Sorry, I have been unable to post as my situation was so bad. I stayed 6 day in hospital after surgery unable to eat anything because of nausea and vomiting. I was just living on IV feeding. Day 7, I could eat a little bit without having nausea and throwing up my stomach contents. I was sent home on day 8 and yesterday my catheter was removed.

My problem is now total incontinence. That is 100% incontinence. It looks that my bladder got used to the catheter mechanism and is refusing to keep urine. Is this normal? What can I do to eliminate of at least reduce this complete incontinence?

Your valuable advice is greatly appreciated.
Posted 9/18/2018 11:42 PM (GMT 0)
Sorry to hear you had a rough time. Hopefully you're on the mend now.

Sadly, incontinence is a normal side effect of prostate removal. You've got a lot of healing to do. It should start to resolve over the next few weeks/months. It takes time.

The best thing you can do now is to just wait, walk, drink water, and do your kegals.

Hang in there, it gets better each day.
Andrew
Posted 9/19/2018 7:44 PM (GMT 0)
John, with your surgery having been done on September 5th, just 2 weeks ago, it’s way to early to get nervous about incontinence. Especially with the catheter having just come out. Lots of guys are fully continent within a month or two. Lots of guys also take a much longer time.
A small percentage don’t recover full continence, but it’s small. So don’t despair

Do your kegels regularly. Walk a lot. If it doesn’t start to improve , talk to your Dr. many Drs recommend a form of biofeedback to help with this issue, it helps assure you are doing the kegels correctly a,omg other things.
I’m betting you’ll start to see improvement soon. I was mostly continent at about 6 weeks, but I continued to improve out to the 9 monthnmark. Progress will be slow and not linear.

Patience is tough to have in a situation like this. But it’s what you need. Hang in there.
Posted 9/19/2018 7:57 PM (GMT 0)
John, I hope I am not the bearer of bad news, but this should have been made clear to you before your surgery. Incontinence is VERY common, in fact the norm, for a short time after surgery. By short time I mean weeks. Some of us a good bit longer. Some a lot longer, even though a lucky fe are good to go right after surgery. It is sort of a crap shoot as to which category you will be in. But most- the majority- are at least mostly OK in few weeks. So don't be worrying that this is anything unusual, and most likely you will be mostly OK within a few weeks or eve sooner. A tad better each day.

Post Edited (BillyBob@388) : 9/19/2018 2:48:47 PM (GMT-6)

Posted 9/19/2018 8:31 PM (GMT 0)
Hi John. I saw this post and opened it to reply but I got nothing. Still have a prostate never had surgery never spent time wearing diapers only had a catheter one time when I had a bladder stone removed. This surgery guys are better suited to reply to your concerns. The one thing that I can say is that your body has been through a nasty surgery. It is going to take a while to adjust to a new normal. The USPSTF does not believe that men should make their own healthcare decisions. They think that there are too many guys out there who have unnecessary procedures and thus have recommended that prostate cancer should not be screen for. I think you informed yourself as best you could and made a treatment decision. Kudos. The healing process takes time some men do better than others some men have their prostate removed and never have another erection and never regain continents. Some men recover quickly and are back in the saddle in a couple of months. Do your exercises to strengthen those core muscles and be patient. It will happen for you
Posted 9/19/2018 9:57 PM (GMT 0)
Sorry to hear all the problems you've had with surgery. Although I myself didn't go the surgery route, the incontinence you're facing now is not uncommon. My brother did have surgery for his prostate cancer and I know it took a while before he could pretty comfortably control things. Good luck and do keep us posted!
Posted 9/19/2018 10:59 PM (GMT 0)
I did not experienced total incontinence. I realized that my blatter was emptied in the brief route from my doctor office to home, but I also realized I could have control when sitting or lying down. And it improved constantly so that I was dry in two months. I guess anyone follows a different course on this, but pacience and hope are needed during the hardest first days. Even if you are unlucky and this situation persists in the future, be sure there are different ways to solve it. But for most of us it has just been a temporary bad experience. First couple of months after surgery may be tough, but hopefully you will back to normal life sooner than you think.
Posted 9/20/2018 5:20 AM (GMT 0)
John-my husband had surgery July 26 And is gradually improving. He was pretty frustrated at first but walking and light activities have helped! Please be kind and patient with yourselfsmile He is starting a therapy called uro -stym tomorrow. I believe it is the same biofeedback treatment someone referred to. It may be worth checking out in a few weeks. Heal and treat yourself well. The guys here are petty great.
Kittytalk
Posted 9/20/2018 4:29 PM (GMT 0)
Dear forum members,

I thank everybody who tried to help me or comfort me and would like to post my update.
My incontinence started to improve yesterday and it is now around 50%. I’m still taking pain killer medications like Oxycodone and Tylenol because I still feel pain. I hope to improve daily over the next few weeks and wish good luck to everybody.
John
Posted 9/20/2018 5:39 PM (GMT 0)

John-Can said...
Dear forum members,

I thank everybody who tried to help me or comfort me and would like to post my update.
My incontinence started to improve yesterday and it is now around 50%. I’m still taking pain killer medications like Oxycodone and Tylenol because I still feel pain. I hope to improve daily over the next few weeks and wish good luck to everybody.
John

My surgery wasn't a walk in the park either. I lost 40 lbs, hospitalized for the same timeframe and symptoms as you, and was cathed for around 3 weeks. It made me feel like the lone ranger. It wasn't a fun place to be.

You're on your way back. But as has been said....it's a lot you've been through. Time will heal you.
Posted 9/20/2018 5:43 PM (GMT 0)
John - you got a raw deal here, but hang in there. Before you know it, this will all just be a bad memory.
Posted 9/21/2018 12:33 AM (GMT 0)
Great news that you are improving John, it will continue
Posted 9/21/2018 10:20 AM (GMT 0)
The fact that continence is improving so quickly is a great sign. With a lot of guys who had prostate surgery the improvement waits months. Sorry to here about the unpleasant side effects, but it will get better with time.
Posted 9/21/2018 4:12 PM (GMT 0)
John,

It's great news that your incontinence is improving already. It sounds like you are on the fast track to recovery. I don't have the exact stats but, roughly, the expectation for recovery of continence after surgery are:

When the catheter comes out: fewer than 10% of men are continent
Three months after surgery: about 65%
One year after surgery: about 90%

That remaining one guy in ten needs to talk to his doctor about fixing the problem with additional surgery.

But you seem to be on the fast track. My only advice is not to rush it. Doing you Kegels as you doctor advised will speed your recovery but getting impatient and doing too many will slow it down.

If you feel like your improvement is stuck s few months from now you can talk to your doctor about physical therapy or biofeedback training (both mostly the same thing.) That can help if you need it.
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