I have serious pissing problems with this cancer and after DX last fall, a TURP was done in December. From that sample, pathology determined this beast to be a Ductal PCA, a very aggressive cancer. Pissing problems returned in March, and the answer was to perform another TURP.
Radiation Doc is then unwilling to treat due to possible urninary complications from the TURP and wants to give this a full 6 months time to fully heal. Puts my treatment in September.
Pissing problems return and the solution is to teach patient how to self catheterize. Pain then develops in Ass, off and on at first. Then after a couple weeks becoming longer, stronger and more frequent. MRI ordered and finally got scheduled and completed last Wednesday.
Results determine that: "The MRI scan was done earlier today. It shows progressive disease. There is invasion of the musculature in the pelvis on the right side. There is also some progression into the anterior rectal wall on the right side. His right buttock pain appears to have a clear anatomic explanation. This is also evidence that he is not responding, clinically or radiographically to the current systemic therapy. He might have a prostate cancer with multiple cell lines. Part of the cell lines are responding to the current systemic therapy but the others are not. This would explain why the PSA is dropping yet, on imaging, the disease is progressing."
Well, I say, 'No Shit, Sherlock'!
Can't go back in time, but dammit, when you are dealing with a super aggressive cancer type, shouldn't the priority be to kill it? In March they should have brought out the self cathing lessons. Was not an option. So let's do a TURP and sit around.
Well, the cows got out of the barn!
This fully explains my pain problems. I went from super active to sitting on my ass taking Oxy in one month.
Radiation Doc at Mayo said he has never seen or treated a more aggressive cancer, ever. I am in the top 99 percentile, of the bad. I told him I wanted a prized from Mayo, and that he better sharpen his tools.
Let the killing begin, finally, Radiation party begins 7/6 for fittings and whatnot. Going to be proton IMRT. Also to add some other cocktails. I have yet to speak with my oncologist for his thoughts. Maybe he will recommend another TURP!
(well that was a cheap shot joke at my Mayo Team)
Also just earned an entry ticket into the Palliative Care club, but the earliest they can see me is August. In the meantime, they assign me a Pain Dr.
Brothers, I didn't think this pain could get worse. Holy fuck, was i wrong!
If you have Urinary issues and an aggressive disease, kill the disease and get use to a catheter. Now you all now more than, it seems, my Mayo Docs.
Dave
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DMohr011
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I’m shocked that your Mayo team failed to coordinate the treatment protocols between the urologist and the oncologist. The delay in providing urgent radiation therapy obviously allowed the cancer to grow. Plus, if the cancer is comprised of two different cell lines, why wasn’t that picked up by the pathologist at the time of the original diagnosis? They should have ordered an MRI back in March to see what was going on. The growth of the tumor into the muscle and the rectal wall should have been caught earlier.
The prospect of proton therapy is good news given that it releases all of its radiation energy when it reaches the tumour and doesn’t damage the healthy tissue that the beam passes through. Proton therapy vaults are typically huge due to the rotation of the machine. We don’t have any proton therapy units in this part of Canada due to the high cost of equipment and the related infrastructure.
I have Ductal adenocarcinoma also and I admit that your experiences are making me wonder what’s next for me. I have been warned many times about the aggressiveness of my cancer.
Stay strong Dave. I sincerely hope that this change in your condition is going to wake up your cancer care team and spur them into action. The radiation therapy is nothing to be concerned about and you will find it to be easy to go through.
Keep us updated on your progress brother. We are all pulling for you.
Dave, Man you have been dragged through the barnacles. All you really want to do is fish, and these guys keep dragging this out. The good news is knowledge, and knowledge is power. July 6th is coming up soon. Radiation should bring relief, and get you weened off the pain meds, and the constipation that goes with them. I was told by Dr Karen Hoffman (very sharp and hard working) Rad Onc at MD Anderson-Houston, that the Proton machine was booked out to November (everyone wants it because it works), but you powered your way in for early July….well done!
I previously sent you the piece on Nano Knife which uses Electro Magnetic PCa killer fields that can be used around other organs better than heat (Hifu) or cold (cryo). Think it is called IRE? Ask them if that can be used in conjunction with Radiology. MDA may not have yet?
Also, gene testing of the tumor (2x as often missed first time) with aggressive multi line PCa has been reversed with “Keytruda” with several guys on this site HU. It is one of the MAB drugs. Something like Premuzlemab or something similar (cant look up while typing here).
Man, hang in there. This too shall pass. You are one tough Cowboy. We share the double TURPs upfront. Hoping for pain free, catheter-less outcome here my friend. Pulling for ya.
Thanks Mike! I will bring this up with the team. Keytruda at same time as radiation was the option discussed before. Not sure if that has changed.....Oncologist has yet to respond to new spread.
I think we need some good old risk taking and throw out the SOC book for us!
Dave, I feel for you. I'll never complain about my issues again. Difficulty urinating, getting up at night 5-7 times and constipation following SBRT of the prostate. I am told that, in all probability its inflammation and that things should start getting better soon. It's been 6 weeks. so we should see.
Ha, i know Joe! 6 months ago I joined this Forum and took note, there is so many messed up cancer patients out there, and my problems are so small. I still think that today.
By the way, if you have true problems emptying the tank, and it just is painful and slow - self cathing is really not that bad, and the feeling of being empty is sooooo great.
Self cathing should be real easy unless you have complications such as mine in which case it may be an unbelievable challenge to get a catheter that works. There are many types and every vendor sells essentially all the same stuff but it is amazing how little their "associates" know about anything including catheters. Also, I have good doctors (i think) but no one gave me more than very very basic instructions on catheter use. No one inserted one for me to watch the techniques. This is insane, you can do a lot of damage if you have no idea what you are doing. If my general had prescribed catheters I am sure she would have demonstrated their use. She is the first and only woman to stick a finger up my butt (DRE) she can deal with the "ick" factor and i am sure she would not have a problem holding my dick and showing me how to cath.
Maybe it is PT where they teach cath use? Anyway my experience with this critical aspect of my health care has been less than good.
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Cyberknife is in my future
Any benefit to RP given likely extracapsular extension
My journey with PCa
