I haven't posted in quite a while but like many others read daily and laugh and cry along with you.
Quick summary my husband was diagnosed November 2018. Had chemo and 37 fractions of radiotherapy. Due to come off Lupron in November this year if PSA stays undetectable 🙏 He had N1 T3a.
He has been getting up a lot in the night to pee for over a year (same times ever night). He had a flow test at the hospital which the consultant said was 3 out of 10 (which we knew).
Based on the flow test he's been diagnosed with an enlarged prostate. Two options given are; a catheter with risk of bleeding and infection or a TURP which he said as he has a Gleason 9 has a high risk of incontinence 😭
Unsurprisingly both options sound pretty awful and maybe leave my husband in a worse place than he is now!
He tried Flomax but had to stop due to low blood pressure.
Any thoughts/ideas? We have just read Cialis may offer some benefit 🤷🏻♀️
Thanks so much,
Gemma
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Thanks, yes I'm starting to think dealing with it is the better option in comparison to incontinence by TURP anyway.
He just looked so disappointed after today's call which was pretty harsh so thought I'd check that we aren't missing something the NHS isn't offering. He's so tired of hourly trips bless him
I found Rapaflo worked even better than 2 Flomax - there are about a dozen different alpha-blockers he can try - one might work for him. Orthostatic hypotension usually resolves after a few days - remind him to get up slowly at first. Cialis can help too.
I'm surprised his prostate is still enlarged after 3 years of Lupron. How big is his prostate now?
There is a mechanical device called Urolift that they can place in the urethra that opens it up.
Thanks so much TA. I hoped you'd reply.I'm a bit baffled by the call, this diagnosis was from a flow test so I don't know how big his prostate is and how they can know the cause of nocturia from a flow test. At diagnosis it was 45 (whatever the measurement is)
A year a go they were going to use a camera to investigate but couldn't because of a UTI at the time. My husband asked about this today as he expected more investigation before treatment options and was told it isn't needed.
He definitely had trouble with Flomax as he took it for some time and nearly passed out and fell a couple of times. Definitely couldn't drive as it was dangerous. I think all alpha blockers are the same with regards to dropping blood pressure.
Hmmmm maybe we can look at Cialis as an alternative with his gp (no alpha blocker or Cialis was offered from Urology)
I agree, this makes more sense to me. His prostate was never huge to start with. It would fit with radiotherapy and perhaps scar tissue. We'll see with Cialis and speak to gp about alternatives to flow max.
Then we'll have to pay to go private for further investigations to get to actual cause. Not poor guess work from an uninterested urologist.
If it was scar tissue, would we still be left with a TURP as recommended treatment for that?
TURP can get rid of scar tissue, but scar tissue can grow back. Some people are more prone than others. There are collagenases that dissolve scar tissue, but it is experimental. Is Urolift available?
It is an available treatment on the NHS website but wasn't an option given.
The urologist pushed for a decision on the phone TURP with high chance of incontinence or catheter. My husband hadn't even heard of a TURP! We'll have to pay to go private.
Sorry to vent! Thanks again for your time, very much appreciated
I have same prob...4 times evry two hrs like clock work...ive resorted to pee bottle as i can limit awakeness...and try to get back to sleep ,i know others on here resort to same ...another problem is when i goto loo somehow refrigerator gets between me and bed.....uhmmm...🤔
Thanks Boywonder56! I'm sure it's a common problem here.
It it weird, my husband goes exactly the same times every night too! Thankfully he seems to sleep walk and goes straight back to sleep for an hour or two 🙄
I have had 2 TURP’s. Im 67 yrs old. Incontinence not a problem. First, you need the scope (cystoctomy) to see what is happening. 2nd, follow Tall Allens recommendation as they are far easier than a TURP. My PCa was bulging into bladder from prostate, causing urinary blockage. The TURP is how my biopsy/diagnosis was obtained (not typical needle biopsy rectally). Gl 8, 2 Lymph nodes >1cm, 1 possible bone met in T5 spine. Not something you would look forward to, but survival is key here. Much of the bad stats on TURPs come from older machines-no longer used- with high electro magnetic field frying nerves. One of the obvious issues is to find someone who has completed many. Dr Paul Young at Mayo in Jacksonville did my first. He is in early 60’s and has completed over 2,000 TURPS. I believe the”been there, done that” theory is real. He is excellent. They ask u to not lift >10lbs for 8 weeks or exercise for 4 weeks. Dr Matthew Sorensen did my 2nd TURP to clear up some hematuria and friable tissue in bladder. He is out of Pinellas Urology in St Pete also excellent and caring. In his mid 30’s with fewer under his belt, but very competent and compassionate with very good outcome. My recovery from 2nd much easier than first, probably because much less invasive. Hope that helps,Mike K
Given that your husband has successfully dealt with this problem for over a year already I find his urologist's insistence on a quick decision and his limiting the options to only the two that he stated (TA has shown that there are a lot more options than just those two) are uncalled for. You might be able to find another, more interested urologist who will think harder about the problem and explain all of the possible treatments.
In addition to the options that Tall_Allen suggested, one thing that might be worth trying is to cut down the Flowmax/tamsulosin (or other alphablocker) dosage. If he hasn't tried it yet, he might possibly find that a half dose will significantly ameliorate his urgency problem without lowering his blood pressure too much. Maybe it's possible to fiddle with the dosage to find an optimum dose. I took two Flowmax capsules a day to allow me to urinate at all after a brachytherapy treatment. When the inflamation died down some, I switched to one a day, and then later to one every two days. Eventually I got off it altogether, but I was easily able to tolerate the one per day and one per two days.
Another drug that helps me is ibuprofen. Two before bed allows me to sleep through the night with just one wake up. One before bed generally gets me through with two wakeups. I take one ibuprofen rather than two because I don't like to take any more than I need.
Another option is to keep a urinal or a jar with a tight fitting cap by the bed. I do that. I almost always get up at least once each night, usually twice, and sometimes three times. Going back to sleep after pissing in the jar isn't always easy but it's less disruption than walking to and from the toilet. I'm a light sleeper anyway and I'd probably wake up more than once even without the need to urinate. I try very hard to be quiet and not rock the bed in order to disrupt my wife's sleeping as little as possible. I don't like getting up but I'm used to it.
One more suggestion is to consider wearing diaper like things. They won't keep him from urinating but they'll handle small accidents where he doesn't wake up in time or where he's in a car, plane, or other place where he can't get to a bathroom fast enough when the urge become urgent. Search Google or Amazon for ( nighttime incontinence products for men ) to see some of the options.
Thank you so much Alan. A little care goes a long way! I so appreciate your time and all the care and compassion on this site. It's been invaluable to me ♥️
I had actually forgotten about Ibuprofen, it did help during radiotherapy (which I think is when things got worse).
Failing that we'll speak to the gp about trying other alpha blockers and possibly trialling dosages.
I use a wide mouth collapsible as a pee bottle when backpacking. Much harder for me to get out of sleeping bag and tent in the mountains than the short dash to the loo. A nalgeen bottle is probably more convenient at home.Safer too, if on Flomax or similar with risk of syncope on standing. I had that once 2 years ago getting off the toilet, fell on my head and broke my neck at C-2 odontoid. Very inconvenient.
Here's an idea that is free and easy. I read recently that there is a muscle that presses down on the bladder to empty it. As we get older, the muscle gets weaker and the bladder does not empty completely. I was only getting up once per night but sometimes could not go back to sleep so it was very annoying. I decided to try contracting the muscles below my stomach as hard as I could to urinate before bed. It only resulted in a small amount of extra urine, but, lo and behold, I slept through the night. That is my standard routine now and I only get up about once a week. I hope this works for you.
LeeLiam thanks so much for your tip. It's great that it is working for you 😊
I actually just read about a Urethral message on Prostate Cancer UK which sounds a similar idea but using a different part to empty the bladder before bed.
Dehydration can be a problem .. for me it 6-7 trips per night even with less water before bedtime. My urology is jacked up baby. No stopping the flow . Take care .
I take Nocdurna at bedtime and this has stopped my getting up at night. It was prescribed by my Urologist. Approximately 2.5 yrs now no issues
A pair of toilet bowl motion detector led lights make the night trips more pleasant. 2 for $25 on Amazon. Mine have keep up a charge for over a year now . No fumbling for lights or disturbing our partner . Good luck
Yet another considois the distinction between an over filled bladder from relative blockage/ obstruction and bladder spasm giving rise to urgency to urinate, or leakage without the bladder being full. Any urologist can sort out the difference with cystometry in the office. Neurogenic or spasm of the bladder can also be treated with Botox (botulinum) injection which can work for 4-6 months. This is an option to alpha blockers. Worth considering and discussing.
An urologist said he was high risk for incontinence because of Gleason 9, not sure why. I also wondered about radiotherapy but no mention of that being a problem🤷🏻♀️
Makes me wonder how much of the history he actually read as treatment was done by oncology which is another hospital (in same city). No mention of exploring medications beforehand
Thanks Turt713171, difficulties after radiotherapy makes sense.
My husband is trying a few things at the moment, such as Ibuprofen and Tumeric. Then we'll speak to GP about Avodart and failing that we'll pay to go to an Urologist privately who may have more time
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No cancer found from TURP tissue ???
Pluvicto trips airport scanners
Feeling very hopeless at this point.
looking for recommendations for top radiation oncologist in Calif or Mayo for second opinions.
