Prostate Cancer- getting help-questions answered

Posted by cony2 @cony2, Aug 16 4:01pm

Approximately 20 years ago a Urologist after listening to my symptoms and without doing procto or anything said I had prostate cancer and would schedule me for surgery next week– my response was lets talk and chose to go on the blue pill and wait.
Since then after biannual tests and blood count going from 4 to 7 now 14, suggests getting a bone marrow test to see if any cancer cells show up.
My question is: should I consult a cancer specialist now???

Interested in more discussions like this? Go to the Prostate Cancer group.

Certainly not a dr., however, I went to my regular urologist when my PSA went up. He had a surgeon that does RP and a radiation oncologist in the practice, so they are very experienced in treating Pca as a group.

If I understand you went from a PSA of 4 to 14 in a year, in my humble opinion, it's likely time to be thinking about cancer detection/treatment. When I went to 11 the sequence went;

Digital Rectal Exam (inconclusive, seemed normal to doc)
Biopsy, in office ( 8 or 12 cores showed cancer with a gleason of 4+3 in the worst 3 cores)
Bone scan to check for metastasis (negative)
MRI to prostate – showed cancer in the prostate only at that time.

Then on to treatment options….

Eventually I had a PSMA CT scan and it was negative as well,

There are a lot of other things that can impact this decision, including age and general health etc..

So short answer, if your urologist's practice can't take you down the diagnostic road, I'd say yes, it's time to look for someone who can.
Best of Luck to you!

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If you are near the Mayo Rochester area there is a cancer in person support group that got the ok to start up in October. I can post the info if you are near Rochester. In the past we have had people from near and far. Meets on Wednesday once per month at noon.

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You probably should, much has changed and in the hands of a good medical team of urologist, oncologist and radiologist and shared decision making you can make an informed decision based on clinical data snd your personal life and health information.

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@cony2, I agree with other members and encourage you to get a consult with a qualified urologist to test for prostate cancer.

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My husband’s oncologist prescribed Abirateron (Zytiga) treatment assuring us there was no risk of seizure side effects. Three to four weeks into treatment, husband had a gran mail seizure and was transported to ER. Thankful he was home and not driving, etc. Three of his doctors (oncologist, pcp, and now neurologist) still say this is not a side effect. They don’t like it when we do our own research, My husband has been seizure free for over forty years. He will be having an MRI and EEG just to be sure something else isn’t going on, but it seems the Abiraterone was the culprit. Any thoughts? Thank you.

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@cilong

My husband’s oncologist prescribed Abirateron (Zytiga) treatment assuring us there was no risk of seizure side effects. Three to four weeks into treatment, husband had a gran mail seizure and was transported to ER. Thankful he was home and not driving, etc. Three of his doctors (oncologist, pcp, and now neurologist) still say this is not a side effect. They don’t like it when we do our own research, My husband has been seizure free for over forty years. He will be having an MRI and EEG just to be sure something else isn’t going on, but it seems the Abiraterone was the culprit. Any thoughts? Thank you.

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Hello,
I was on Zytiga, and noticed a slight breathing problem which over a short period of time became more serious. When I couldn’t walk one block without feeling a heaviness in my chest I called my nurse and told her I would no longer be taking Zytiga. My Doctor told me that when her patients complain about this problem she recommends another medication. I don’t understand why we all can’t get out in front of the wrecking ball, but that seems to be the way it is. I have been using Relugolix for 11 months with no breathing issues.

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I did not know or missed that breathing problem with Zytiga
Thanks for that info
I will ask my oncologist
Interesting

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I don't know enough about these medications to comment. I do know that when my PSA score went from 4 to 11 my urologist did a biopsy in the local hospital and seemed hell-bent on doing robotic surgery.
I was scared and really had trouble thinking things thru. I ÓK'd the surgery and my prostate was taken out. For 2 weeks I had a lot of blood in my urine. I also (in the 2 weeks) had what appears to be my only "follow-up" with the urologist.
A year earlier my blood test showed that I had "low T". So I had monthly testosterone shots. But the shots seemed to have no effect. Then the urologist sent me for a blood test and my PSA had risen to 11. A final blood test (after 1 month of skipping the "T boosters) showed my PSA levels dropping but the biopsy showed my prostate was ridden with cancer.
Now some-one in a stronger position, either by way of money or something else, would probably ask the doctor if the T-shots caused the cancer. But when you are 70 years old and have been out of work for ten years because both your knees have to be "totally replaced" you become more careful what you say to some-one like my urologist. I was afraid that if I voiced my suspicions he would almost reflexively think that I was thinking "lawsuit".

So I kept quiet.

I was not given any medication for prostate cancer recovery and I stopped taking my usual daily dose of Tamsulosin. I figured that I was having enough trouble with bladder issues. I mean, I would be sitting more or less naked in front of my PC, and suddenly I would feel a warm wetness on my feet. I'd look at my penis and saw that once again I had decorated my bedroom floor with splashes of red and yellow. The blood tapered off to nothing after about 3 weeks, but I am still having issues with incontinence. My "robotic enhanced surgery" was done on June 16th. I still need to keep empty jars around my bed because I wake up having to pee but often, I know that I will not be able to stand upright before I start to piss on anything around me. Hence the 4 empty jars. Even without taking the Tamsulosin (aka Flomax) the only real control is to simply drink less liquids, especially an hour or so before going to bed.

Oh, since I have bored you all with TMI, I will also say that I have no sex drive post operation. I have tried to masturbate but even though some people claim you don't need an erection to reach orgasm, it has not worked so far for me. Maybe a few months down the road….

I appreciate having this bulletin board to read other men's experiences, and to share my own.
Thank you all.

REPLY
@ctpaul

I don't know enough about these medications to comment. I do know that when my PSA score went from 4 to 11 my urologist did a biopsy in the local hospital and seemed hell-bent on doing robotic surgery.
I was scared and really had trouble thinking things thru. I ÓK'd the surgery and my prostate was taken out. For 2 weeks I had a lot of blood in my urine. I also (in the 2 weeks) had what appears to be my only "follow-up" with the urologist.
A year earlier my blood test showed that I had "low T". So I had monthly testosterone shots. But the shots seemed to have no effect. Then the urologist sent me for a blood test and my PSA had risen to 11. A final blood test (after 1 month of skipping the "T boosters) showed my PSA levels dropping but the biopsy showed my prostate was ridden with cancer.
Now some-one in a stronger position, either by way of money or something else, would probably ask the doctor if the T-shots caused the cancer. But when you are 70 years old and have been out of work for ten years because both your knees have to be "totally replaced" you become more careful what you say to some-one like my urologist. I was afraid that if I voiced my suspicions he would almost reflexively think that I was thinking "lawsuit".

So I kept quiet.

I was not given any medication for prostate cancer recovery and I stopped taking my usual daily dose of Tamsulosin. I figured that I was having enough trouble with bladder issues. I mean, I would be sitting more or less naked in front of my PC, and suddenly I would feel a warm wetness on my feet. I'd look at my penis and saw that once again I had decorated my bedroom floor with splashes of red and yellow. The blood tapered off to nothing after about 3 weeks, but I am still having issues with incontinence. My "robotic enhanced surgery" was done on June 16th. I still need to keep empty jars around my bed because I wake up having to pee but often, I know that I will not be able to stand upright before I start to piss on anything around me. Hence the 4 empty jars. Even without taking the Tamsulosin (aka Flomax) the only real control is to simply drink less liquids, especially an hour or so before going to bed.

Oh, since I have bored you all with TMI, I will also say that I have no sex drive post operation. I have tried to masturbate but even though some people claim you don't need an erection to reach orgasm, it has not worked so far for me. Maybe a few months down the road….

I appreciate having this bulletin board to read other men's experiences, and to share my own.
Thank you all.

Jump to this post

I (age 69) had my radical prostatectomy in March 2022 and the incontinence is still with me 6+ months later but is much, much improved. I stopped using pads after 3-4 months and now only have occasional drips and dribbles, usually in the evening. No longer any problems during the night. I would recommend pelvic-floor therapy as it helped me. As for sex drive and ED, my urologist started me on a daily low dose of Viagra (with stimulation) after my catheter was removed. Not much happened for the first 3 months or so but I was able to have an erection-less orgasm occasionally. Progress improved slowly but surely after 3 months and I am happy to report that intercourse was achieved recently (6 months post-surgery) so maybe you will have similar good fortune.

REPLY
@ctpaul

I don't know enough about these medications to comment. I do know that when my PSA score went from 4 to 11 my urologist did a biopsy in the local hospital and seemed hell-bent on doing robotic surgery.
I was scared and really had trouble thinking things thru. I ÓK'd the surgery and my prostate was taken out. For 2 weeks I had a lot of blood in my urine. I also (in the 2 weeks) had what appears to be my only "follow-up" with the urologist.
A year earlier my blood test showed that I had "low T". So I had monthly testosterone shots. But the shots seemed to have no effect. Then the urologist sent me for a blood test and my PSA had risen to 11. A final blood test (after 1 month of skipping the "T boosters) showed my PSA levels dropping but the biopsy showed my prostate was ridden with cancer.
Now some-one in a stronger position, either by way of money or something else, would probably ask the doctor if the T-shots caused the cancer. But when you are 70 years old and have been out of work for ten years because both your knees have to be "totally replaced" you become more careful what you say to some-one like my urologist. I was afraid that if I voiced my suspicions he would almost reflexively think that I was thinking "lawsuit".

So I kept quiet.

I was not given any medication for prostate cancer recovery and I stopped taking my usual daily dose of Tamsulosin. I figured that I was having enough trouble with bladder issues. I mean, I would be sitting more or less naked in front of my PC, and suddenly I would feel a warm wetness on my feet. I'd look at my penis and saw that once again I had decorated my bedroom floor with splashes of red and yellow. The blood tapered off to nothing after about 3 weeks, but I am still having issues with incontinence. My "robotic enhanced surgery" was done on June 16th. I still need to keep empty jars around my bed because I wake up having to pee but often, I know that I will not be able to stand upright before I start to piss on anything around me. Hence the 4 empty jars. Even without taking the Tamsulosin (aka Flomax) the only real control is to simply drink less liquids, especially an hour or so before going to bed.

Oh, since I have bored you all with TMI, I will also say that I have no sex drive post operation. I have tried to masturbate but even though some people claim you don't need an erection to reach orgasm, it has not worked so far for me. Maybe a few months down the road….

I appreciate having this bulletin board to read other men's experiences, and to share my own.
Thank you all.

Jump to this post

I'll just drop a couple comments here with the caveat that I'm not a dr or an expert, just having gone through the operation myself.

My understanding of the T relationship, put in simple terms is, Testosterone is essentially prostate cancer "food", this is why when you're on radiation they give you therapy to reduce the production of testosterone. I've often hear of folks getting testosterone injections but I just don't understand the science/idea behind it other than trying to boost quality of life for the patient.

At your stage of the game, again as a layman again, the continual bleeding would concern me a great deal. It shouldn't be from the urethra repair at 10 weeks if that's not healed it should be checked. However, if it's not that, they'd have to start looking at bladder issues or perhaps kidney stones. Having said that, by intentionally dehydrating to avoid the incontinence issues you could be creating an environment where stones might flourish.

You said you haven't had a follow up yet, but, have you told the doc what is happening? With this symptom in mind, I'd be knocking hard on the urologists door at this point for some answers/diagnoses. Maybe even a second opinion. Other things like sex drive and erectile issues would be secondary for me at this point, and, I would think it's fairly early in that part of the journey for you.
Good Luck to you!

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YES don't wait Lots of therapies Zolodex, I did 40 sets of radiation but 5 yrs later metastasized to L2 Lumbar which I had radiated 1 yr ago PSA 1.2 on Zolodex

Now looking at Darolutimide

Just saw this " Relugolix Approval Expected to Alter Treatment for Advanced Prostate Cancer Best to reduce testosterone which as you know is the fertilizer for prostate cancer

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@edo

I (age 69) had my radical prostatectomy in March 2022 and the incontinence is still with me 6+ months later but is much, much improved. I stopped using pads after 3-4 months and now only have occasional drips and dribbles, usually in the evening. No longer any problems during the night. I would recommend pelvic-floor therapy as it helped me. As for sex drive and ED, my urologist started me on a daily low dose of Viagra (with stimulation) after my catheter was removed. Not much happened for the first 3 months or so but I was able to have an erection-less orgasm occasionally. Progress improved slowly but surely after 3 months and I am happy to report that intercourse was achieved recently (6 months post-surgery) so maybe you will have similar good fortune.

Jump to this post

Forget about sex Its the testosterone feeding P cancer

Get to oncology Maybe get on Zolodex

Just saw this " Relugolix Approval Expected to Alter Treatment for Advanced Prostate Cancer Best to reduce testosterone which as you know is the fertilizer for prostate cancer

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