The worry is continuing

Hi to everyone,

I'm sorry to bother you again, but I've been reading all the information on HW and also all the information and studies, to find out an answer to my question.

I'd like to know how long will usually take for any benign tissue (if left behind by the surgeon) to settle, and for the PSA to level up.

I am almost three years out since my operation. My PSA went up from 0.006 to 0.011 in the first year, and in second year it stayed around 0.013 and 0.014. Four months ago, it went up to 0.017, and now it is 0.024. Is my PSA ever going to level up, or am heading for BCR?

I had prophylactic prostatectomy, but they found small cancer (approximately 0.07 cu cm (about 0.1%) G6.

Thank you for any help.
Frederick

30 core biopsy: Negative with PIN
RALP: June 2013 Mr Karim London.
Histology by Bostwick lab:
SMALL ADENOCARCINOMA, GLEASON 3 + 3 = 6 PRESENT IN THE LEFT APEX ONLY.
Tumour volume: Approximately 0.07 cu cm (about 0.1%).
Apical margin: Negative.
Bladder margin: Negative.
Circumferential margin: Negative.
Perineural invasion: Negative.
Vascular/lymphatic invasion: Negative.
Extraprostatic extension: Negative.
Involvement of seminal vesicle(s): Negative.
Premalignant change: Multifocal high-grade prostatic intraepithelial neoplasia.
Other pathology: Nodular hyperplasia, chronic active inflammation.
Pathologic stage (TNM 2010): pT2aNx.

8 weeks sPSA: 0.007
6 months sPSA: 0.006
9 months sPSA: 0.008
1 Year sPSA: 0.013
20 months PSA 0.015
25 months PSA 0.013
29 months PSA 0.017
33 months PSA 0.024

Post Edited (Zeddy) : 3/11/2016 2:51:21 PM (GMT-7)

Frederick,

I agree with John T - you've been seriously overtreated and you now seem determined to find something when there is no evidence of anything there. If you found a doctor willing to give you a prophylactic prostatectomy, you can probably find a doctor willing to give you prophylactic salvage radiation. I think they call this Munchausen's Syndrome - which is a very real illness that you should really address before you do yourself anymore harm.

- Allen

Tall Allen said...
Frederick,

I agree with John T - you've been seriously overtreated and you now seem determined to find something when there is no evidence of anything there.

- Allen

Hi Allen and thank you for your attention. I'm a shrink myself. I don't agree with your diagnosis.
Munchausen's syndrome is a psychological and behavioural condition where someone pretends to be ill or induces symptoms of illness in themselves.

I don't pretend to be sick. I am feeling very normal physically and mentally. I just wanted to know if anyone had any idea about the behaviour of my PSA and its sudden rise. I was convinced that it had levelled up and it will not rise again, as it stayed the same around 0.014 for one year, and now sudden and speedy rise. My oncologist thinks 0.03 is the time to act. How is it possible for someone who didn't have a cancer (as some studies don't class G6 as cancer) to end up on RT table?

Fredrick

Post Edited (Zeddy) : 3/10/2016 3:39:49 AM (GMT-7)

Zeddy, it is ironic that you had a negative biopsy and now have a rising PSA after treatment. How old are you?
I think you are being vigilant in watching the PSA.
A secure thought is that Gleason 6 does not typically shorten life. Another secure thought is that state-of-the-art radiation therapies do not usually cause much harm or discomfort.
I don't think there is any need to act soon. Try to think of something else and stay busy.
(I wrote an Applied Psychology book myself.)

Post Edited (RobertC) : 3/10/2016 6:30:00 AM (GMT-7)

RobertC said...
Zeddy, it is ironic that you had a negative biopsy and now have a rising PSA after treatment. How old are you?
I think you are being vigilant in watching the PSA.
A secure thought is that Gleason 6 does not typically shorten life. Another secure thought is that state-of-the-art radiation therapies do not usually cause much harm or discomfort.
I don't think there is any need to act soon. Try to think of something else and stay busy.
(I wrote an Applied Psychology book myself.)

Hi Robert,
Thank you
I'm 60, but fitter than most people half my age. Have been running for 40 years, and I have no fat on my body. :) I know this is not relevant.
I had the operation because I didn't want to have this cancer which killed three members of my family.

John T said...
Wow Zeddy,
It seems you are bound and determined that you have cancer. You didn't and don't have it now, at least the type that would ever cause you harm or what 50% of all men have.
You need a good psychologist more than you need any medical assistance. Please get some help and get your life back, because there is no way that the issue you have should affect your life to the extent it has.

Dear John,

This is your post some 6 years ago:
"Other organs produce psa, but not in measurable amounts. It's either PC or benign prostate cells. If it is benign psa will stabalize while pc will keep rising. The only way to tell early on is with scans like Color Doppler or MRIS and a biopsy of the suspected area."

My question was, does anyone know how long one has to wait before it stabilises?

Zeddy said...
My question was, does anyone know how long one has to wait before it stabilises?

The answer is there is no answer. Each case is different with results covering all possibilities. All you can do is keep testing and watch the results. Some folks will say the ultra-sensitive PSA test causes more anxiety than it does good. I think that may apply here.

I have had 4 PSA tests since my surgery. The first two reported as <.05. Great news right? The next two were reported as .03 Good news too right? The .03 is essentially the same result as <.05 but I went from "undetectable" to "detectable". I would of rather had the last two reported as <.05 but it's really the same result.

So in your case if your tests had come back as <.05 there would be no worries which is where I think you should be thinking. Of course keep testing and watching but live life. With a tiny amount of contained G6 I would be shocked if it ever would have given you an issue or will it in the future even with your family history.

Jon

Zeddy-
When you look at a bunch of really small numbers like that and imagine a pattern, you are just projecting. uPSA has never been validated for kinetic analysis (velocity or PSADT). At such low levels, there are normal fluctuations that obscure or show false trends. With your very favorable pathology (no positive margins, no EPE, low volume, GS6) and very low levels of uPSA your odds of a recurrence right now are negligible. Perhaps some "healthy" (they are outside of the prostate environment now, so they don't behave like intact prostate cells) prostate cells are in circulation, perhaps some have been left at the anastomosis - all as a result of your prophylactic surgery. If it goes above 0.03 ng/ml and then goes up at a rate of 0.05 ng/ml/year or more, come back. I hope this is what your doctor is telling you.

- Allen

PDA said...
At the same time one of the young women would cover me up with a gym-sized white modesty towel

Lucky you. She asked me to hold the towel while I lowered my pants and underwear a few inches. As I couldn't both hold the towel and hold my pants up, I just gave up on the modesty and flashed her. I guess she was unimpressed, as she didn't give me her number on the way out

- Allen

PeterDisAbelard. said...

Zeddy, you said...
I rather die than having Radio or hormone therapy.

No you wouldn't.

I would be met by two cute young women in white uniforms. I would unfasten my trousers and drop them around my knees. At the same time one of the young women would cover me up with a gym-sized white modesty towel, displaying all the practiced skill of a magician's assistant.

I still won't change my mind about RT. This is blackmailing !!

Frederick

Post Edited (Zeddy) : 3/10/2016 4:23:09 PM (GMT-7)

JNF said...
With due respect, if you are not going to use the two proven methods of treating a recurrence, radiotherapy and androgen deprivation, why are you concerned and even asking the question? If you are concerned, then man up and accept the proven treatments. All of the sudden I am sounding like Dr. Phil!!!

Seriously, I can't imagine being lower risk than you. I would have loved to have had your stats and then been able to do nothing and sleep well at night. In spite of your family history, my personal opinion is that the aggressive treatment you have had was unnecessary and, to this lay person, smacks of malpractice. I feel the same way about Angelina Joline's multiple surgeries. But then, I am probably out of line as I really don't know the specifics. You made your decisions and accept the consequences. I am stating my opinion, not criticizing you. But, you did ask the question and surely want the various opinions.

To your questions, what did your oncologist say? As a doctor you know what you expect of your patients. In this case as a patient, are you following the doctor's advice? I empathize with your concern, but I believe the evidence shows the concern is miss-founded at present and could be damaging to your well being if the concern becomes an obsession. I wish you the best and agree with others that are suggesting you re-assess your situation and relax.

Best wishes,

Jack

Dear Jack,

Thank you for your reply. We all have our principles in life. I am not afraid of RT, but I am very afraid of being disabled by the side effects of these toxic treatments or the cancer itself. Have been a naval officer, and a pilot in my early life, and running since I was 20, I hate to think of a day that I could be incontinent and disabled one way or another.

During the course of my biopsy, I developed septicaemia which almost killed me, but it did not scare me of having the operation. Probably I am the only man in the UK who had prophylactic prostatectomy as it is against the law to take out a healthy prostate, but having lost my father, my uncle and grand father to the disease, my doctor accepted that it was morally right thing to do. Our NHS didn't pay for my op, and I had to finance it out of my pocket.

My oncologist work for our NHS. Our NHS policy is "not to investigate so that they don't need to treat", and that is the cheapest way for the government. He told me that he would consider action at around 0.03 and treatment at 0.05, but that is beside the point.

I had one of the best surgeons in the country who is the trainer for robotic surgery. I never had any incontinent or ED from day one. He promised me that my PSA will not rise, but it is happening. Thank you for your advice. It is a case of mind over matter.

All the best to you too.

Frederick

Zeddy,
I'm not really a shrink. Really a patient who wrote a book about "The Recovery Method" developed by psychiatrist Abraham Low a long time ago. It uses a group form of Applied Psychology for anxiety and anger.

Wish I had your problems!
Bob