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
tom86211 NoRegrets
Posted
A few questions:
NoRegrets tom86211
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.
tom86211 NoRegrets
Posted
Thank you for your answers - very informative.
henry84646 NoRegrets
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
NoRegrets henry84646
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!
henry84646 NoRegrets
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
patty56475 NoRegrets
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
NoRegrets patty56475
Posted
I hope I have offered some hope - my best for good results!
FratDude NoRegrets
Posted
Very informative! Thanks so much for posting!
NoRegrets FratDude
Posted
You are very welcome. Ask away if you have questions - nothing off limits.
patty56475 NoRegrets
Posted
so my husband was diagnosed with a GLEASON SCORE OF 6. ( low risk for now) LOTS OF RESEARCH TO DO ......
joshuapryce1987 NoRegrets
Posted
Glad things worked out for you. Keep up the good work soldier.