Is This Normal for PC?

[DMohr011]

Every Cancer is different is what they all say. I seem to have inherited a very different one.

Urination issues: Had urination issues as symptoms beginning last Summer, and diagnosed in November with Ductal PCA. The medical solution to my pissing problem was a TURP. Lasted a bit over two months. Pissing problems return. Medical solution - another TURP in March. Lasted a bit over two months. Pissing problems return. Medical solution - teach patient how to self catheter. URO said self cath at night, and should lead to a good nights sleep. For about a week I was able to piss a bit thru the day and catheter at night. Now, starting yesterday, I am using having to self catheter every single time.

Pain issues: Started about a month ago. Serious stabbing pain up the rectum, right side. Would occur once a day for maybe a minute and then leave. Pain scale of 'worst frickin pain i have ever felt'. After a week or so, stabbing pain coming more frequently and lasting longer. Medical solution - take a couple extra strength Tylenol and Meloxican. Scheduled for a 'impar ganglion block' on Tuesday.

Last scans were done in May and showed an 80% reduction in tumor size. Celebrated for a day. Then these other issues begin.

Medical solution: order another MRI. Waiting for the schedule folks to call.

The Pain: Anyone have ideas? I have done 4 rounds of Acupuncture. That seemed to help for a week, then wore off. Going to do more Acupuncture until I can get the blocker shot.

The pissing problem: is a supra catheter my next solution? URO said I am too young for it, that it is a real pain and inconvenience. That was before I was self cathing every time.

Other than ADT, I have yet to begin any real cancer killing radiation. They won't due to recent TURPS - concerned about, get this, causing serious urinary issues! Can it get any worse?

Or is this just normal for PC. Just deal with it, Dave. My wife said, 'you better toughen the fuck up'. (she grew up on a farm and in rodeo')

Ugh.

[Tall_Allen]

Some men in your situation have a radical prostatectomy.

[DMohr011 in reply to Tall_Allen]

Thanks TA.

So far, no surgeon will proceed. My tumor is attached to the rectum. When first diagnosed, I could feel it, and sigmoid clearly showed bulge. Now, no bulge - it has shrunk, but still attached.

[Tall_Allen in reply to DMohr011]

Damn! Are you shrinking it with ADT?

[DMohr011 in reply to Tall_Allen]

Yes, ADT is working. .28 PSA reading. Last scan in May showed an 80% reduction is size. ADT doing its work. Tumor is revolting?

[Tall_Allen in reply to DMohr011]

Can they get rid of the tumor on your rectum with photodynamic therapy (PDT)? It's experimental, but they have used it on vertebral metastases and on other cancer tumors.

clincancerres.aacrjournals....

nature.com/articles/bjc201495

jcmtjournal.com/article/vie...

Maybe it can also be used to permanently ablate your excess urethral tissue.

You may want to contact [e-mail] at the Weizmann Institute in Israel to see if they are treating patients with these kinds of applications.

[Spyder54 in reply to Tall_Allen]

Many applications: “Since photodynamic therapy (PDT) does not compromise other treatment options and presents reduced long-term morbidity when compared with chemotherapy or radiotherapy, it appears as a promising alternative treatment for controlling malignant diseases.” In this review,

[FRTHBST in reply to DMohr011]

Another focal therapy that could be useful is IRE. When I went through this in Germany, the doctors said that IRE can be used where there is rectal contact.

[Spyder54 in reply to FRTHBST]

IRE accepted by FDA. clinicaltrials.gov/ct2/show...

[TottenhamMan]

Dave, if you are self catheterizing every day I think that you have already “toughened the fuck up”. I recall that you are being treated at the Mayo Clinic in Phoenix. From your description it doesn’t sound as though you are receiving the level of care that you need. The MRI will show them a lot more information and hopefully they can base a plan of action on that and get you the care that you need.

I’m hoping that some of the experienced heads on this forum can offer you some badly needed insight.

Stay tough mate.

[DMohr011 in reply to TottenhamMan]

I think they are as surprised as I am. They are just reacting to the symptoms now. Fingers crossed the MRI shows them a direction.

Yes, care team is Mayo, Scottsdale. Oncologist is strictly prostate cancer. URO is surgeon. Radiologist runs the proton dept. Just seem to be sssslllloooww at reacting. Maybe not paid enough! Ha

[Hidden in reply to DMohr011]

Dr Pariminder Singh is the pc specialist that saved my life. He’s at Scottsdale Mayo now . Mayo is a great place to be . Good luck 🍀

[treedown in reply to Hidden]

My mother in law has been wanting me to come down and visit Mayo AZ since my dx. I keep telling her if after my initial treatment new decisions need to be made I may take her up on it.

[Hidden in reply to treedown]

So if a new decision isn't needed, does that mean no more mother in law visits? I may need to do something like this.

[treedown in reply to Hidden]

No visits to her anyway. I haven't taken a sick day or a vacation day since 1997 when I started working for myself. She visits us once in awhile but not too often.

[TottenhamMan in reply to treedown]

I used to work 12 hour days, weekends, and avoided vacations until I was 69, and then I got prostate cancer. I see a pattern here.

[treedown in reply to TottenhamMan]

Well you made it longer than me. I was 56 when diagnosed but yes I have thought of all the things like this that may have contributed.

[lcfcpolo in reply to treedown]

Same. Diagnosed aged 53. 2 days sick in 35 years, then bang. Now just medically retired. Had been under massive stress 4 years before diagnosis.

[treedown in reply to lcfcpolo]

I have to try real hard and had to acquire some new skills to keep working and reduce the stress.. So far so good but retirement sounds really good so plans are being made. I hope your enjoying yours.

[TottenhamMan in reply to treedown]

I took a couple of months off to make my 6 weeks of radiation therapy easier on me. I’ve never taken that much time off ever in my life. I dropped into my office for a few hours this week for the first time in over 9 weeks. After four hours of listening to the problems with projects (I’m in Architecture), and people asking when I’m coming back to help out again with trouble shooting and conflict management (dealing with contractors), I decided there and then that I have to retire. I just don’t want it anymore. I realized my tank is empty and I’m done. Before PCa I would have carried on, but not anymore. I feel really bad for guys like Dave, Icfcpolo, and yourself because you are so much younger than me, but I know that you are all going to beat it.

[treedown in reply to TottenhamMan]

Good for you. My priorities changed quite a bit after being diagnosed but the desire to make sure my family is set regardless of which way my disease turns also weighs heavy on my mind.

[Hidden in reply to treedown]

We are responsible.

[Rocketman1960 in reply to treedown]

They say when they take your life they give you life. We never appreciate life until we stare a crummy diagnosis in the eye. March on brothers.

[TottenhamMan in reply to treedown]

That’s one of the reasons that I feel very sorry for you guys in your fifties. When I was in my fifties I was still putting my two sons through university, was a partner in my firm, and was still trying to save for retirement. I couldn’t have stopped working back then either. It would have been a very different situation for me back then, especially given that my retirement fund only accumulated over the past ten years (I’m 69 now). You guys have been dealt a really bad hand, and for that I feel badly for all who find themselves in such circumstances. I probably had early prostate cancer when I was in my late fifties but didn’t know it. My PSA was around 5 over 10 years ago, and my family doctor said it was a little high, but don’t worry about it. When I reviewed my PSA history with my oncologist in November last year, she told me that if she had seen me ten years ago with a PSA of 5 she would have said “you might have prostate cancer” and she would have ordered a biopsy. Ten years later I now have locally advanced ductal adenocarcinoma. Bitter? Not much.

[treedown in reply to TottenhamMan]

Thanks for the sentiment and I wish I would have been older when it appeared as well. My adopted son is only 14 so when I got cancer and the pandemic hit all at the same time it did a number on his world view. I just pray I will be around long enough to get him to young adulthood like 21 or 22.

[DMohr011 in reply to TottenhamMan]

Man you are so right. I made it thru 4 daughters, all with college degrees and and all finally married. These last few years began to focus on retirement fund and have had the biggest income years of my life.

Now having to make some planning decisions with my business, and working thru this disease, packing the retirement account for the wife. Even though she pulls the tough love once in a while, she's my rock and probably is as pissed off about not getting layed as I am!

My last physical exam was 2 years ago. The Doc asked questions off his Apple and ordered blood work to check psa. I asked, what no more finger checks? Yes, he replied, unless you want one we just go off the blood work. Psa at 1.4 then too.

When the first Uro did a finger check in November before biopsy, he knew it was cancer, in fact, by the feel of it he said I may have a rare form.

Would that first doc had felt something was off?

[Hidden in reply to treedown]

You can do it. I was forced into it at 53 on disability only for six years now. I was not as prepared as I thought for a catastrophic pc . 👍

[Hidden in reply to lcfcpolo]

I too was 53 and no other illnesses. Stress was killing me .

[Hidden in reply to treedown]

Do what you’ve got yo do !💪

[Spyder54]

Wow Dave, sorry you are having so much pain and discomfort. Your wife needs to put her Compassionate Rodeo hat on at this time. Dont care how tough a cowboy is, this pushes all men to their limits. My 2nd Turp was in November with no hematuria events since. Good flow. So many possibilities other than obvious PCa is sqeezingbon the uretha as it passes thru the center of prostate. I also had Scar Tissue at the tip of the uretha where urine exits causing 6’-8’ projectile urination but next step would be closing it off at tip and backing up. Urologist went in with Cystoscopy and opened up scar tissue at tip. Said it happens from Turp procedure occasionally. Maybe you too? Just trying to think. Your self cath’s should open up scar tissue I would think.

[DMohr011]

One would think a cath would clear the way some. Things seem to be just closing up, and these last couple of self cath's - man, something is blocking and that last inch really sucks.

[Spyder54 in reply to DMohr011]

Dave,One more thought on the Cystoscopy. After my first 2; in URO’s office, I said these are BS. Said to Doc, I will never do another of these without Anesthesia. If you are w Mayo,” ask, and you shall receive”. They clearly need to see whats going on with your Urethra.

Tall Allen is right (again😎) with his suggestions above on the rectal PCa possibility. They cannot/will not cut that or try to peel it away with Robotics. Too much danger to rectum. You must pursue alternatives and soon. I may be 2 steps behind you, as my MRI is very similar, and no Surgeon (7 now) will agree to Prostetechtomy. Last weeks appt w Surgeon who has done 14,000 RRP’s said “No, get all those lymph nodes shrunk down, and the PCa along rectum, and PSA closer to undetectable, and only then will I present your pathology to my 15 member tumor board. If they then say yes, only then will he do the surgery, and he added, you would have a good outcome.” btw: when he told me my PCa may already be in rectum, I said I have had no bleeding, and had a negative Cologuard test last year, he said….Cologuard does not pick up PCa, and you will not usually have bleeding until very late stages. I too have had super sharp yelping rectal pain that stops me in my tracks, usually on way to bathroom. Ya, Cowboy Cerrone of UFC fame would not do well with the journey we have been on.

[Kaliber]

For your pain, probably nsaids aren’t gonna do it and are bad for the liver over time too. You’d want to try to avoid all those generally and especially because of the load your adt and other drugs puts on your liver. Ask your palliative care team for some break thru pain meds like hydromorphone or OxyContin. Especially for the stabbing ones or the short duration mega pains. If you have some “ discomforts “ ( doncha love that stupid brush off for the plain ole word pain !!) which are the continuous gnawing or grinding pains, then also ask for some Vicodin or time release morphine.

There is nothing wrong with trying to be comfortable as much as possible. The above may not make “ all “ the pain disappear, but it will make you way more comfortable. Since you are in palliative care, you should have no problems getting the pain meds.

💪💪💪❤️❤️❤️

[Hidden]

Hey Dave.. I feel your pain. You will find a way out of these current issues. Rt will hopefully shrink down the tumors and let you pee freely again. I went into k failure with pc tumors blocking urethra and bladder. Great pain ending with bi-lateral neuphrostimy tubes and a foley for a year and a half of hell. Then it worked . The tubes shedded foley tossed in the trash. That was over five years ago now. I pray for you to escape this torture sooner than later . This uro stuff is demoralizing.. stay strong and keep the faith. You can come out of this . Likening APC to a rodeo is a good fit. This thing wants to kill us. Don’t let it . Hang in there Dave.. 🙏

[DMohr011 in reply to Hidden]

Thanks Lulu! Wow, foley for a year and a half? Holy Foley! I was thinking that a long term Foley for me may be a better solution than this constant cathing.

I believe one doctor used the term eviscerated when he talked about my prostate and the tumor that surrounded it.

Tuesday have appmt with Uro. I'm not leaving his office until there is a plan. Maybe I'll bring a pillow!

[Hidden in reply to DMohr011]

I had constant u t I s and was delt bad antibiotics that drove neuropathy on to me. Foleys get UTI’s. Then I had internal stints that also had UTI’s. You don’t want any of this stuff ever. I Feel for you . This is the worst torment to a fine fellow. You need a fix for the urology . I hope it will soon. Then you can heal . Stay strong.

[Dett]

For what it’s worth, I would never say that to my husband or to anyone who is dealing with serious health issues or intractable pain. It’s possible that your wife is terrified and can’t deal with what you’re going through. Nonetheless, you deserve better.

[spencoid2]

I had IMRT plus brachy plus ADT. All seemed OK until i started having occasional inability to urinate. One evening i could get an intermittent cath in but no urine would flow because blood and tissue were blocking the cath lumens. I could get it in but no flow so i ended up in the ER where a bitch of a doctor) created a false passage and then inflated the Foley balloon in my prostate. Time for another ER and an emergency TURP from which i have still not recovered 3 years later. I have a major bladder neck contracture. I can get the cath past the external sphincter (a coude tip can help with this) but at one point it became impossible to get any cath in, it just stopped at the bladder neck. It looked like the only options were more surgery (irradiated tissue does not heal well) or a supra pubic. I think i would rather just die.

I finally found a cath that i can get in. It has been a struggle dealing with cath suppliers. It is amazing how fucked up they are, they make a ton of money and seem to fuck up more than not. Welli can almost always get the cath in. It is a Tieman tip (this has a slight taper, just enough that i can get it in my tiny opening. My urologist said i should cath twice a day whether i "need" to or not. I was getting a series of UTIs and the URO suggested it was because i was not voiding fully. As with everything related to this disease nothing is consistent and i find it impossible to relate cause and effect. Have good days and lots of bad ones.

Being able to peep without trauma is important. See if you have any success with the Coloplast SpeediCath 28494. This is as 14 FR, i tried to get other sizes but it seems that cath suppliers like to make things as diffiuclt as possible so i only got the 14 and not the 16 i also wanted.

Most caths are made with fairly soft plastic which i do not understand. If there is any resistance the cath bunches up in the urethra which offers very little resistance. It can even get itself almost tied in a knot if it bunches up enough and it can be difficult to remove so be sure it is not bunching up. The speedi is a little stiffer than most caths so this helps. A large cath would also be stiffer. There is also a cath made by Roche which is supposed to be similar.

I have a ton of these and can send you some to try if you want to avoid the bullshit of getting a script and getting the cath supplier to send you the right thing. It took me almost two months to finally get the right cath and that was after basically giving up and deciding to try to find something that worked again. I live far from medical help and it is really scary to not be able to pee. Even when i could not get any cath in i could still pee enough to resist a supra pubic. I am not sure about this but i was told that once you get a supra it is not possible to go back?

I would hope there are surgical options. If you have not been irradiated you have a better chance of healing than if you had been. I would love to have my bladder neck "fixed" but the only surgery option my URO is suggesting is another TURP. no thanks!!!

[DMohr011 in reply to spencoid2]

Thanks for your comments Spen. There has been a couple times now that it just won't go that last inch, and, right don't force it. But when your sweating cause your so backed up, it is frustrating. If my resistance contoniues, I'll give that one a try. Never knew they came in different styles.

I could not imagine your situation where these straight soft tips do not work at all. Man, that had to be the worst.

We will get thru this shit.

[Higsby]

Sorry for your problem. Explore a procedure called Rezūm which I just got wind of today and have not looked into it - so I have no comment about its efficacy for your urination problem.chesapeakeurology.com/speci...

Higsby

[Madbeach]

My hubby is also dealing with problems urinating. Can u tell me a little more of what u r experiencing. He hasn’t started his radiation or the meds yet, probably start this coming week. has had only one shot of Eligard so far, but the problems he has had with urinating started a few years ago and before we learned that the cancer had returned. Thx and so sorry for your medical issues. Wishing the very best for you.

[Spyder54]

A little tidbit on IRE: “Thus, IRE is a non-thermal technique, which means that changes associated with tissue freezing or heating are not relevant.”

[DMohr011]

Had the Ganglion Blocker shot done and pain went away, for about an hour. Doc said it may take 6 - 12 days for the stereods to kick in, or it may not help at all. But just found out, It won't help. Got a referral to the Palliative Care Club. Where the good stuff is found!

MRI done yesterday and Radiation Doc calls. Fkcng cancer has grown into a muscle now. 30 days ago was my last MRI and it wasn't there. Doc said out of all his years, mine is the most aggressive cancer he has ever seen or treated, up there in the 99%. Said the cancer cells that invaded the muscle broke away from the mothership and are kinda a breed of their own, not emitting any psa.

Radiation party to begin in July. Some proton, some other. Sorry, not very doctor technical with this shit. Doc said he wanted to wait b/c of TURP done in March and didn't want any urinary complications but needs to speed it up b/c of the aggressiveness. I asked , ' you know I have to self catheter most of the day, and all night. how much more fucked up could my urinary become? '

He agreed. Its time to do some killing.