My Diary, day of surgery to post-op visit

Posted by chipe @chipe, Sep 17 1:09pm

9/16/2024
Had the surgery. Lasted 5 hours. Went into the OR at 2:30, out at 8.
I did get to tell my going under dad joke "Hey, anybody want anything while I'm out?" 🙂
Woke up at midnight!
Only acetaminophen for pain 325mg every 6 hours
The first time I got up to walk I had uncontrollable shaking, I was so cold.

9/17/2024
Up most of the night because my back really hurt.
The feeling that I really, really have to urinate and defecate is almost overwhelming. Sitting on the toilet is no relief.
No solid foods until, as the Doctor said, "I fart."
Came home at 11 am
I slept for about 2 hours nin a recliner
Emptied catheter twice

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@chipe

9/22/2024
-Lots of bladder spasms with urine and blood coming out of the tip of penis. Switched from pad to actual depends.
-Sleeping is MUCH better
-only took tylenol once
-Still need colace to soften stools
-walking stairs in house at least 3 times a day (go upstairs, downstairs, basement, repeat). Helps a lot
-noticing a lot of rumbling/gas pains in lower abdomen
-tomorrow is post-op to get cath removed!!

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Interesting about the blood. I'll keep an eye on that.
Leaving for the hospital in half an hour...

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@chipe

9/22/2024
-Lots of bladder spasms with urine and blood coming out of the tip of penis. Switched from pad to actual depends.
-Sleeping is MUCH better
-only took tylenol once
-Still need colace to soften stools
-walking stairs in house at least 3 times a day (go upstairs, downstairs, basement, repeat). Helps a lot
-noticing a lot of rumbling/gas pains in lower abdomen
-tomorrow is post-op to get cath removed!!

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You’re in for a surprise when they check to see how well you can empty your bladder. You’ve got a fire hose now.

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Oh my you are so spot on. Holy moly!

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9/24/2024
Post-op visit 8 am.
-good news/bad news. The good is that my score went from 5 to 3. Bad news is that cancer in 1 lymph node, seminal vesicle. Put those together and I’m a “high risk’ of reoccurrence.
-PSA blood test at 6 weeks, see radiation oncologist at 8 weeks, PSA again at 12 weeks.
-catheter OUT!!!!!! Didn’t hurt at all. Yes to incontinence. Not overly so.
-I now have a fire hose. Man, what a stream. 🙂

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@chipe

9/24/2024
Post-op visit 8 am.
-good news/bad news. The good is that my score went from 5 to 3. Bad news is that cancer in 1 lymph node, seminal vesicle. Put those together and I’m a “high risk’ of reoccurrence.
-PSA blood test at 6 weeks, see radiation oncologist at 8 weeks, PSA again at 12 weeks.
-catheter OUT!!!!!! Didn’t hurt at all. Yes to incontinence. Not overly so.
-I now have a fire hose. Man, what a stream. 🙂

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Wow. Talking about oncologist already. You'll be alright. You're tough.

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@chipe

9/24/2024
Post-op visit 8 am.
-good news/bad news. The good is that my score went from 5 to 3. Bad news is that cancer in 1 lymph node, seminal vesicle. Put those together and I’m a “high risk’ of reoccurrence.
-PSA blood test at 6 weeks, see radiation oncologist at 8 weeks, PSA again at 12 weeks.
-catheter OUT!!!!!! Didn’t hurt at all. Yes to incontinence. Not overly so.
-I now have a fire hose. Man, what a stream. 🙂

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chipe, sorry to hear of the bad news....have you had a PET scan already? How about a Genomic test? Hopefully they will treat that area at an early stage and prevent any further problem.
My pathology report was not ready yet, doc will call when it is...very minimal incontinence here, and yes, going from a huge prostate induced trickle to a fire hose was startling!

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@tom9410

chipe, sorry to hear of the bad news....have you had a PET scan already? How about a Genomic test? Hopefully they will treat that area at an early stage and prevent any further problem.
My pathology report was not ready yet, doc will call when it is...very minimal incontinence here, and yes, going from a huge prostate induced trickle to a fire hose was startling!

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I have not had a genomic test, I wouldn't know where to begin to get a genomic test. Does insurance cover those?

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Here is where you can get a free genetic test. Just make sure you don’t pick the option “you want your doctor involved” and they will send you a tube you can spit into. They will have you meet with a genetic counselor over the phone after the results come in. Takes 2-3 weeks.

http://www.prostatecancerpromise.org

The results will be analyzed by Color, one of the top places to go for genetic testing.

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@chipe

I have not had a genomic test, I wouldn't know where to begin to get a genomic test. Does insurance cover those?

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The doctor sends your biopsy core, I believe it is just the most serious one to one of the several Genomic Lab companies. Mine was Decipher. Not sure how it works for lymph nodes...maybe they can send positive tissue found there. Many doctors are using the genomic results to help devise the treatment course. For example, the radiologist I consulted said that even though
i had gleason 8, a shorter course of ADT might be in order due to my low genomic score. Might be worth asking your surgeon about it. My insurance did cover it. Wishing you all the best.

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