Post prostatectomy

Thanks very much Jason

I hope the Botox helps

I am at about 12 times a day but that is the bladder training regimen right now. I am hoping the gemtessa will help me get to every 2 1/2 hours shortly

Did you have any side effects with the Gemtesa?
I know I am 'just out of the gate' at ~6 weeks , but i sure want to do everything and anything I can to get back to normal if that is possible.
thanks

@edinmaryland
How much water do you drink a day? Perhaps if you keep track of the amount of water consumed in addition to coffee or other beverages with respect to the number of times of urination that might help your doctor. I drink about 80 oz from 5am to 8:30pm and I average about 10 times a day

I am not drinking as much water as you probably 30-40 ounces a day. Before the prostatectomy I did not drink much water. i do not drink soda, or alcohol or mild just coffee and water and now I am off coffee. I guess I am a light water drinker but am drinking more now -intentionally- in support of bladder re-training.
My doctor is really not keeping track . I was advised to shoot for going every two hours whether I needed to or not. I try to do that most days and like you stop the water around 5 or so So I can get some sleep at night.
However, most nights I am up every hour or two. I have learned the hard way not to try to bladder train when i might fall asleep.

Have others on here given up coffee or have any information about coffee and incontinence. I read that coffee can be an irritant so stopped. I missed it. But I will gladly forego if it will interfere with getting continent again.
Thanks everyone

Look up Dr Grim i think his name was. He compiled graphs of cure rates comparing the major treatment paths (surgery/radiation, etc) versus your risk staging.
He passed on but theres a foundation that maintains and continues his work.
There are real advantages of going one way or the other despite the industry mantra being… the outcome of surgery or radiation is about the same… Can’t count how many times i heard this false and ridiculous statement.
Think its prostatecancerfree dot org?

Hey hogy, Pretty good info on that Dr Grimm website. Took me a while to figure out those graphs and how to manipulate them, but they still leave me somewhat confused.
I plugged in robotic surgery and different EBRT regimens and they don’t seem all that different to me. Seed therapy, however, seemed to be better than both. Am I reading this correctly?
Thanks
Phil

Erin no side effects

I often wonder why the seeds do not get more attention. I have shared before that I have a 96 year old uncle who has had the seeds for probably 30-40 years seems to have helped him

My decision to have surgery when I was diagnosed in January 2014 (age 57) was based on binary options - surgery or brachytherapy, available "back in the day."

It was a very successful surgery (nerve sparing), the pathology report was very positive. I had zero incontinence when the catheter came out and recovered sexual function within the first year. The main difference sexually:

Dry Orgasms
Greater need for sexual and physical stimulation to achieve erection.

Alas, 18 months later I experienced BCR, did SRT...the rest is history as they say. I attached that clinical history

What will your experience be, we don't know. In part that lies with the skill of your surgeon, whether or not the surgeon has to remove a nerve(s) or not because of where they find the cancer once they operate, what your pre-surgery sexual health was...

Likely you will be on some type of "Penile Rehabilitaive Therapy (PRT) - the UCSF has a good program - https://urology.ucsf.edu/patient-care/adult-non-cancer/male-sexual-and-reproductive-health/erectile-dysfunction

My PRT was relatively "simple," daily 5 mg Cialis and use it or lose it, aka, masturbation.

As to other physical activity I was gradually able to resume normal activities, playing basketball, lifting weights, riding my bike, swimming, skiing, all within the first three to six months.

Will my experience be yours, don't know. There are too many variables, the surgeon, the location of your cancer, your surgeon, your pre-surgery health and physical condition.

If you stay with the surgery choice, certainly have the discussion of nerve sparing or not, guidance to your surgeon on what to do if he determines that he has to take out the nerve(s).

You don't give a lot of clinical detail on your diagnosis which may be useful in the members on this forum providing their feedback. certainly surgery is an option but not the only option. A good friend of mine chose radiation, others have chosen doublet or triplet therapy.

Have you discussed treatment with other specialists - radiology, oncology? Have you had imaging, if so, which and what did the report say> Have you had a biopsy, any Genomic testing or other tests such as Decipher...?

Every scrap of clinical data is important in making a decision, as is a multi-disciplinary team.

Kevin

@edinmaryland
I don't know whether coffee causes issues or not. I drink 3 times of 8oz a day between 5:30 an to 7:30am and none after that. I'd recommend that you keep a notebook with how much water you drink, how often you empty your bladder and how much each time. I kept a plastic cup with marks of 4, 8, 10 and 12oz and emptied into that to get an idea of the volume. I made sure i washed the cup with soap and water after each use.That kind of data over a week or two might help your doctor to see what he can recommend. We only get 15minutes with our doctors and the more data we provide it might help them see a clearer picture, is my experience.

Thanks
I am pushing water not sure my doctor is terribly concerned or would track volume like yours. I know I am drinking way more than I used to and I believe this should help my bladder get used to larger volume as opposed to letting it get used to less.

I would love to have my coffee back ( my one vice, I do not do drugs or alcohol at all) However, right now I want to win this incontinence challenge so am refraining from any experiments