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I am 100% sure I have prostate cancer and scared to death

User
Posted 22 May 2023 at 12:17
I hope that your appointment puts your mind at rest, Jerry.

All the best,

Chris

User
Posted 22 May 2023 at 12:28

Originally Posted by: Online Community Member

...I wonder if you have ever heard of the term “confirmation bias” ? ...

Yes the study quoted costs $12, I have not paid to read it. The abstract says:

"The use of a single, elevated PSA level to screen for prostate cancer is controversial given its reported low specificity and the questionable benefits of PSA screening on prostate cancer mortality. Current guidelines in the USA recommend against screening using a single PSA measurement. Previous studies suggest that using changes in PSA level over time, or PSA velocity, may improve the detection of prostate cancer and/or aggressive disease; however, this is also controversial as other studies suggest PSA velocity does not improve detection and may further contribute to the overdetection of indolent prostate cancer."

So if one suffers from confirmation bias that very important last sentence - "as other studies suggest PSA velocity does not improve detection and may further contribute to the overdetection of indolent prostate cancer." - will be ignored.

Jerry you have found one research paper which I assume, could I afford to read it, I would find very interesting. However if we are to do good science the next requirement is to read other papers on the subject particularly those which contradict this paper.

Clearly none of the papers are correct, if they were they would all agree. They are not correct because it is a complex topic 

Then when we have as much evidence as possible from all sides, we can look at our own test results and see where they fit in. We can't draw any conclusions 100% one way or the other because the science is not that accurate.

 

 

Dave

User
Posted 22 May 2023 at 12:58

It doesn't really matter, but I read the whole article and the false positives were almost at 0% if the rise is more than 10% a year. Now the article is not available any longer, one has to pay 12$. I didn't pay, but I read it, but it is not possible any longer.

As I noticed, reading this forum alone, one can see that when PSA started rising signiffically, the result was almost always cancer at the end.

Edited by member 22 May 2023 at 13:44  | Reason: Not specified

User
Posted 22 May 2023 at 15:04

I am an academic and a researcher.

Most of scientific articles, reports, reviews, etc could be misunderstood and mis-interpreted especially if taken on individual basis and more so if you are emotionally engaged. Every word in scientific field has a different weight and value for the experts as compared to public.

Additionally, there are plenty of scientific publications that will argue otherwise and even oppose each other. The so called “scientific reports” at times are not very accurate, done by some who are not well known in the field, published in journals that are not of much scientific value. Some of them are one sided and some others does not give an accurate picture. Overall, be very careful when reading scientific reports and do not take them on their face value.

 Your own presumption and conclusion of the suffered ones in this forum is not scientific observation and thus not valid and/or acceptable.

Unfortunately, many of us including myself (and except those few active members here) under the psycho pressure of the word “cancer” tend to lose logic and lean to accept more negative news.

It is always said that the prostate grow slowly and many who spot it early will die from other illness that of prostatitis. Even at worst scenario, then it will be at very early stages and not needed so much worry. However, the way you go about it, with so much anxiety and worries, you may not survive the battle, let alone to win the war.. Remember, too much anxiety is poison, reduces your natural defense system, and ultimately speeds up prostate progress.

I know better said than done but remember we all had gone through this and take our words and advise.

Best wishes

User
Posted 22 May 2023 at 15:20

So true, anxiety has caused me diahrroea this 4 days and now I have again burning in my rectum :-( This I know is from stress, not anal cancer...

I did apply to urologist because I have some special insurance to be consulted by a specialist.

I got answer from my family doctor about my PSA worry, but he again read only the 0.04 increase in 10 days, not my initial fear about 100% increase from 0.67 to 1.345 in 17 months.

He told me to check the PSA again in 6 months and that he advises me to go to psychiatrist for my phobia... I am so glad to have the insurance so I can see urologist... I do not believe my PSA would suddenly just drop to 50%, it is much more likely that it will continue to rise and will be over 2,5 in 6-12 month. Family doctor is just looking at the absolute PSA. That is wrong.

User
Posted 22 May 2023 at 15:41

Jerry, your recent PSA test is meaningless because, as you yourself state, you have recently had a significant UTI. A UTI can increase your PSA to 5, 10, or even higher, and it can take a couple of months for your PSA levels to return to normal after the UTI is cured. You may well have had a PSA much higher than 1.3 when you had the infection, and it's now on its way back down but has not yet returned to normal. This is the reason I am sure that your anxiety is baseless.

Please let us know what your urologist says.

All the best,

Chris

Edited by member 22 May 2023 at 15:42  | Reason: Not specified

User
Posted 22 May 2023 at 16:00

Oh, I didn't know UTI can make PSA elevated for so long, in 2019 when I had 0.65 also, I had UTI, but it didn't raise. It was worse UTI than this one (I was crying when peeing), this time it was weird, manageble burning, but also some weird feelings like itching and even tickling, also when I defecated, I got severe tickling when stool passed my prostate. But now it is 3-4 weeks since I got rid of this UTI.

If so you are right, it may be coming down EXCEPT one "tiny" detail... first PSA when still some UTI showed 1.335 and the next one when UTI was cleared 10 days later showed 1.365. If it was going down, it sure has some strange way of showing it. I understand the measurement error, but if it would go down it would not be higher at the second test, because it would go down more than the measurement possibility of error.

User
Posted 23 May 2023 at 18:18

Hi there

I am back from urologist. He did check my prostate over DRE, he found it normal. He tried to do ultrasound of prostate, but couldn't as I didn't drink before (I didn't know he would also do ultrasound), but I have ultrasound of whole stomach on thursday so I will know about prostate volume. Urologist said it looks like 16,5, but since it was 20 2 years ago I think it is more. He found some small cysts in the kidney and told me if I still have urgency in 1 month maybe we do cystoscopy, but because my urgency problems with peeing go back on and off for years and I don't smoke, he told me that bladder cancer is unlikely, because we wouldn't talk to each other if I had this problems 2 years ago because of bladder cancer (because of how aggressive it is).

He said to check PSA again in 4 months and that it may or may not go down. It may go down because I had UTI recently or it may be around the same and this is my new baseline, it happens, he told me. If it goes up and crosses 2.5, then we will examine further. He can not say if this is cancer or not, but he said value is still normal and DRE is normal, if it would be aggressive, he would feel it.

I guess it is good news, but I will carry a stone in my head for 4 months to see if PSA goes more up or at least stays the same.

Thank you all for your encouragement in my dark times. I will let you know when I have some new data.

Edited by member 23 May 2023 at 18:21  | Reason: Not specified

User
Posted 23 May 2023 at 19:51
There you go then - good news. Glad it went well!

All the best,

Chris

User
Posted 23 May 2023 at 21:47
Hey,

Just to add, I can understand your worry, but just in case it helps I had an elevated PSA, and I've had blood in my seamen and urine for just over two years.... as well as all the UTI like symptoms you mention.

I've had 3x MRI's, 2x Cystoscopy, CT Scan, biopsies and more, and although I have issues the good news is there's no cancer, and most likely what I have is prostatitis...

But at one stage I went through the same range of emotions as you.

Just keep telling yourself you're not there yet and that your problems could be anything.... like a simple prostate infection.

As an aside, my main improvements came when I quit any liquids that could upset my prostate, no caffeine, alcohol, and just started drinking a lot of water. A litre of water first thing in the morning especially before anything else hits your system. More water the better in my book.

Goodluck.

Jon

User
Posted 23 May 2023 at 21:58

Originally Posted by: Online Community Member
Hey,

Just to add, I can understand your worry, but just in case it helps I had an elevated PSA, and I've had blood in my seamen and urine for just over two years.... as well as all the UTI like symptoms you mention.

I've had 3x MRI's, 2x Cystoscopy, CT Scan, biopsies and more, and although I have issues the good news is there's no cancer, and most likely what I have is prostatitis...

But at one stage I went through the same range of emotions as you.

Just keep telling yourself you're not there yet and that your problems could be anything.... like a simple prostate infection.

As an aside, my main improvements came when I quit any liquids that could upset my prostate, no caffeine, alcohol, and just started drinking a lot of water. A litre of water first thing in the morning especially before anything else hits your system. More water the better in my book.

Goodluck.
Jon

Thanx, that helps! Because I see no people where PSA accelerates and then goes down, it only goes up... I fear I will have 3 in 4 years...

I actually do drink a lot of water, 1 liter in till noon. I drink carbonated water, I have my own carbonator. I don't drink alcohol nor coffee (but I drink some green cola that has caffeine).

Doctor told me it could be non bacterial prostatistis, but this doesn't elevate PSA he said.

I just have so many troubles with urinary and gastro system for so many years. Like I hve mild UTI for months and then better and then worse again, I have pain in rectum that comes and goes...

Some of it is psychosomatic. I had severe anal pain this 4 days, today after the DRE, the pain suddenly disappeared again.

User
Posted 24 May 2023 at 10:39

Commenting on the point about kidney cysts, apparently, according to my consultant at least, most men over 50 have them (Women not so much). When I was scanned for bowel cancer in 2018 (It turned out to be piles) they were found then but I did not hear about them until 2021 when I was diagnosed with prostate cancer. The report mentioned kidney cysts and when I queried this I was told yes, you have them and when asked how many was told loads.The consultant went onto say that most men have them and that it was not an issue (Presumably until it is!).

 

Ivan

User
Posted 24 May 2023 at 10:44

Thank you for letting me know. The PSA still scares me, funny that the cysts of the kidney do not.

User
Posted 01 Jun 2023 at 11:47

Aches and pains that come and go are common with prostatitis. 

I've had groin pain, dull and sharp, testicle aches, and pressure in the perineum. 

When something is mild but comes and goes you start to doubt yourself.

What I eventually realised was that the NHS hasn't really got any expertise for prostatitis, and in my case, they have just been working to rule out cancer.

I've had to do a lot of my own research and seek out a private urologist who has got proven prostatitis experience.

I'm still not  100% fixed, I'm currently on a 6 weeks course of antibiotics, but I'm the best I've been since all this started 2+ years ago and right now I'm hopeful.

 

 

User
Posted 01 Jun 2023 at 16:48

Thank you for your experience.

After urologist meeting I am terrible. I do not say he did something wrong but testicle examination was very painful and dre was also very unpleasant.

Since then I now have constant or too frequent urge to urinate. My testicles hurt and are kind of painful, my tip of the penis feels like i feel it all the time and not in pleasant way. My perineium is somewhat tender. I did try to ejaculate fortunately there was no blood but it didnt feel quite ok and was a little unpleasurable at that...

To sum it i feel like i have a very mild uti but urine is clear. Now i fear bladder cancer more than prostate cancer. My urine is somewhat light brown but it is like that even when i give urine sample so that is no blood. I never saw like something completely off in urine although i have color blindness problem i would see gross hematuria i think.

So a lot of problems not just psa from 0.66 to 1.36 in year and half. Since urologist exam it is worse. I dont know what can it be except cancer, bladder or prostate. But if it is it is advanced to give so much problem. At night it is better but half nights i have to go to pee once. Scared if i will see gross hematuria this days.

My sto.ach ultrasound in in 5 days it may bring bad news or no news.

User
Posted 01 Jun 2023 at 18:22
You need to see a psychologist or psychiatrist- otherwise you are going to waste your life worrying about things that don't exist
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Jun 2023 at 18:24

Quite similar to me, I have flare-ups, with blood in urine and mild UTI symptoms, and all the aches, but the UTI culture test is always negative.

What I do have is stones in my prostate/urethra and blood in my seminal vesicles (part of the prostate). 

User
Posted 01 Jun 2023 at 18:37

I do get how you're feeling. When you have all these aches and pains every day for months, and you're being woken up every night multiple times needing to pee, same through the day, dribbling, seeing blood in your pee and seamen, and you're worried about something more sinister and the effect on the people you love, it grinds you down.... I've definitely been there.

I had to come up with strategies to get past a lot of the above. Happy to share if you need help with any of the same.

User
Posted 01 Jun 2023 at 22:07
Jerry,

You undoubtedly ARE going to die. Every one of us is. Do you really want to spend the rest of your life worrying about how and when it's going to happen?

My honest advice to you is to enjoy life. You only get one chance at it (unless you're a Buddhist 🙂). Stop worrying, and live life to the full.

Best wishes,

Chris

User
Posted 03 Jun 2023 at 16:56

I have hard time enjoying life if i constantly have a need to urinate and my urinary tract is telling me something is wrong and I do not know what.

 
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