Had Davinci removal - no regrets - lessons to share

Posted , 10 users are following.

I am eight months past the DaVinci procedure to remove my

prostate and I have no regrets. I learned a few things during my journey that I

wish I had read about when I was on this site seeking information when I leaned

about my prostate cancer. I am here to share and hopefully make other’s journeys

easier.

I was diagnosed with very early stage cancer eighteen months

ago. First thing I learned was during the biopsy. They numb the area on the

colon where the procedure occurs, but that is not where you feel it. In hind

sight it makes complete sense, but at the time I was freaked out when it hurt

on the end of my junk. It’s not bad – just an awkward surprise. I did my

research about treatments and the proton beam therapy seemed right for me –

comfortable, not too invasive and minimizing collateral damage. A major

hospital in my city was building one to open in the spring of the next year,

and I focused on that. My urologist was not impressed by the procedure,

emphasizing that it was no more effective than other options. He did not care

about my reasoning (comfortable, not too invasive and minimizing collateral

damage), perhaps because his practice and associated hospital did not offer it.

Second lesson – get a second opinion. I am sooooo glad I did, but that happened

later. At my request, he did give me a referral to a practice associated with

the other hospital; they verified that I was a candidate for the proton beam

and referred me to that team for when they were open for business.

I stayed with my original urologist for the time being. Next

step on the monitoring of my early stage cancer was the MRI and I had no

problem with that. The results came back and my urologist was focused on the

fact that I had bladder stones, and he can take of that. I read up on that and

every line made me cringe. Next meeting, “don’t worry, you will be asleep.” I

relented, and agreed to schedule it. Then he sprang it on me that he would need

to go up and take a ‘look see’ first just to verify, and I would not be asleep

for that. Says I – “you can tell me the size of these things, down to the

centimeter. You need to verify?” “Yes.” He says, “I have to have a secondary

verification before any procedure. We could do that with an ultrasound if you

like.” Third lesson – there are options, you just have ask. Ultra sound and the

procedure were scheduled.

And then my world changed. I woke up one morning and I could

not pee. That had happened three times before and I found that if I moved

around, had some coffee and even a hot bath, things eased up. Not this time.

Emergency room, Foley catheter and they took out a liter and a half of urine.

There was a big nurse dude in the room and I found out later he was there to

hold me down if need be. He was not needed – trust me, if you can’t pee and

have to, you can put up with anything. They sent me back to my urologist who

announced that it was a spasm, removed the cath and as I was able to void, sent

me home. Three days later I was back in the emergency room, this time with the

hospital that was building the proton beam. Fourth lesson – there are options

for catheter tips. The first time it was a blunt tube being shoved through an

impacted prostate (pain of childbirth), this second time it was a twisted tip

that gently worked its way through (not pleasant but not as bad).

Having been referred to that other urology group, I made an

appointment to discuss. This time I was talking to a very different type of

doctor. He is chief of both urology and non-invasive surgery at the hospital as

well as being chair of urology at the medical school. He looked at my records

and quickly identified a significant difference in prostate size from the

biopsy to the MRI six months later. Three minutes digging into the MRI and he

identified what my first urologist had missed – my prostate was not just getting

larger and denser, it was growing an appendage up into my bladder. He gave me

options – 1) he could go up through my junk and make things right, but probably

have to do that again in a few years as it grows back, or 2) have the prostate

removed with the DaVinci procedure. Knowing that there was cancer to address, bladder

stones to remove and not wanting to live in fear of future impacted prostate

issues it was easy for me to decide – remove the prostate. Up to that point I

had been scared away by chances of long term incontinence or needs for

self-catheterization, but that possibility was not as bad as the certainty I

was living. Fifth lesson – do your research to find the best possible doctor.

I was shocked by how quickly I healed after the surgery.

There were four small incisions spread out across my abdomen, and a smaller

incision for drain tube. The surgery was over six hours (reconstructing the

bladder and repairing an umbilical hernia), and I was sent home the next day

after they got me up and walking. They tell you about Keagle exercises to

strengthen the pelvic floor muscles that need to replace the bladder control

muscles that are removed with the prostate – do them! I wore a catheter for a

week post-surgery, and within a week after that was removed I gave up the big

boy pull-ups for pads, and within three weeks I no longer needed the pads.

I bet most guys avoid prostate removal because of the fear

of no more sex; I know that had been a concern of mine. Things are different –

the prostate controls ejaculation and that will never happen again. My junk is

smaller – the urethra goes through the prostate; they cut it above and below

the prostate and stretch the urethra up to reattach it to the bladder. That

length has to come from somewhere. The little blue pill can create an erection

(I was prescribed a small dose of this daily after the operation to help blood

vessels reattach). Sixth lesson to share – you can still have an orgasm; it’s

different and better. It’s called a dry orgasm and it’s great. With a prostate,

ejaculation ends it; without a prostate, it goes on and on and on.

One of the few hopeful comments I read last year when I was

here was a short one: “Guys, I am six months out from having the prostate

removed. It is all good! Hang in there!” At eight months out, I agree. If you

are here looking for answers, I hope my sharing has helped. I wish you all the

best for the solutions that work for you.

2 likes, 13 replies

13 Replies

  • Posted

    A few questions:

    1. are you able to control your pee (incontinence)?
    2. how long did you have a Foley catheter in after the operation before you could remove it?
    3. how long did it take before you felt like you were healed and able to get back to normal activities?
    4. do you exercise, and if so, are you able to to exercise again?
    5. how old are you?
    6. what was your PSA before the operation?
    • Posted

      Hi Tom,

      I am 64, and the I think my PSA was in the 600's.

      I have complete control over when it comes to peeing - that took a little time. The catheter came out a week after the surgery, and I had no control. Drying off after a shower I noticed I was peeing on the floor and not even aware. We went out on an errand the next day and I went through five pads in 3 hours. I was very demoralized, but kept up with the Keagle exercises. The next week I found that I was able to get through the night by waking up to pee. It got better and better over the weeks. One month out no pads and only a little leakage when I lifted something. Two months out even that stopped.

      I have been walking for exercise. I have horses and did not ride for 6 months out of caution. They told me I was fine to after 3 months but I felt like be cautious. Riding now and no issues. I would say 3 or 4 months out I was back to normal, Honestly, there was a process of learning my new body - I had memories of being a little buy and learning to pee like a big kid. It was all good once I realized the process.

      In all, I wore the catherter for six weeks. They wanted to take it out while we waited for the surgery, but i would not let them. I knew the prostate would get impacted again and I did not want to go through being cathed again - they said they would teach me how to self cath and I refused to go that route.

      I hope this helps.

  • Posted

    Mate,

    You have posted a great account of your path.

    Me.. Iam 75 i live in Cairnc , Queenslnd, Austrdlia.

    I was diagnosed in march 2017 had a biopsi with 20 needles into the prostrate which found 9 cores inthe prostrate, 5 on 1 side and 4 on the other. Giving me a Gleeson score of 9 .

    Thus a grade of Tb3 . As you know that the growth has escaped out into the seminal vestricle.

    I went onto ,immediately a course of hormones ADT, 6 monthly injections for 2 years .the hormone treatment effects into the body should finish TODAY...

    I finished Radiation Therapy in December 2017. 39 radiation shots over a 8 week period 8 weeks , 5 days a wee

    I am at the moment in the middle of having Shingles, wow painfull.

    The side effectc of the 2 treatments have bee awful. From day 1 i have experienced insomnia, vomiting, erectile disfunction (no doctor told me to use small amounts of viagara etc, so i i am now totally not actice ) night sweats , profuse, headaches loss of muscle content,

    The full box and dice.

    Urination say 7 times a night

    Still having the urination problem and insomnia, and blood pressure all over the place, bowel problems

    My Psa is now low .o1 but that may not indicate any cancer spread , also now have soft bones.

    To check on my

    Spread or not regular blood tests plus scans are done.

    I am now having pains in the groin, pepvis scrotum and lower stomach, that needs atendin to

    Nasty bugger prostrate problems....

    I was too old to have the prostrate removed

    Regards

    • Posted

      Wow - it does sound like you have had a real go of it. If I may ask, does Australia have the same kind of government run healthcare like England has? Was it that system that told you you were too old to have it removed? I am in the states, and we are having that discussion over here. I am glad I had the choice and am sorry you did not.

      I don't really remember all of my numbers, I put all that behind me. I do know that I had 12 needles in the biopsy and a small trace was found in one. Definately very early stage - had my prostate not become an alien growing inside me and taking over my bladder, I honestly don't think I would have gone the removal route - but I am glad I did.

      Hang in there!

    • Posted

      Good morning

      Yes Australia has a great medical system.

      All of my treatment has been free, from the specialist DRs whogave me prognosis , after the GPs, Mri, 2 years of hormone tredtment, Radiation Therapy, then the ongoing needed visits to my everyddy DR and any tablets etc . Oops any presription that he gives costs me $ 6.5, my physiotherapy is free , all my ambulance journeys are free , my hospitalization ( many) is free, my MRI s etc are free.

      Yuk, my medicines are costing me at the moment $ 100+ a month. Shingles now, Opiats are $ 10 at tablet. Shingles should be gone witin a week.i am still getting abt 8 sweats/ flushes a day.

      Keep well my friend

  • Posted

    wow! alot of info here. my husband just had the biopsy and we will get results JULY 8th. HIS PSA SCORES WERE NEVER super high- like 6.0 but he has a very large prostate and history of prostate cancer ( father) in family. we are fearing the worst, hoping for the best. HE IS 61. WE HAVE alot of research to do if cancer is found. I MAY REACH BACK OUT to you then. Thank you

    • Posted

      I hope I have offered some hope - my best for good results!

  • Posted

    Very informative! Thanks so much for posting!

    • Posted

      You are very welcome. Ask away if you have questions - nothing off limits.

    • Posted

      so my husband was diagnosed with a GLEASON SCORE OF 6. ( low risk for now) LOTS OF RESEARCH TO DO ......

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