First Big Jump in PSA After 20 Years. - Advanced Prostate...

Advanced Prostate Cancer

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First Big Jump in PSA After 20 Years.

kenner profile image
42 Replies

Three years ago my annual PSA went to 0.29, two years ago 0.27, last year 0.21.I had a Radical done twenty years ago ...my Gleason score at that time was 7 and PSA was 37.5 at time of surgery.I never got to 0.0 and my Urologist was disappointed with my result...he didn't do the radical on me.Now I was surprised to find out my PSA is now 0.37 , a big jump. Going to my new Urologist next week ....not looking forward to it,as I know what's coming......either radiation of the prostate bed and hormone therapy...or do I put this off till next fall to enjoy the coming spring and summer months. I also have an artificial sphincter that is getting long in the tooth...it's not holding well anymore and is almost due for a change.Everything at once! I knew this would coming sometime...I am now 68 and still very active.

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kenner profile image
kenner
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42 Replies
fluffyfur profile image
fluffyfur

Curious, what was the lowest your PSA got to after your RP?

kenner profile image
kenner in reply tofluffyfur

I got down to 0.1 3 months after surgery. The surgeon also gave me a shot of Lupron....while I was in the O/R...I wasn't told but I had morning sickness for 24/7 for 2 months...I couldn't stand the smell of meat...I lost 30 pounds before I bottomed out.

Gemlin_ profile image
Gemlin_

PSA-DT seems long i.e slow growing, whatever it is. Wouldn't a PSMA PET/CT scan be viable to find out?

kenner profile image
kenner in reply toGemlin_

I want that. I will ask for it.

E2-Guy profile image
E2-Guy in reply tokenner

Your PSA is still very low. I doubt that any scan will identify everything that is going on. Tall_Allen has posted on this subject.

in reply toGemlin_

Gremlin, hi, I read your post of a PET scan and thy are useful at times for some cancers. A PSA (prostate serum antigen) a blood test is an easy way to check. All men should have a DRE (digital rectal exam) annually as part of a routine physical. The prostate can be palpated easily and if a nodule is felt, then a biopsy is usually done.

Prostate Cancer actually occurs in at least 50 % of all men, and it is “slow growing”. The American Cancer Society say that most men will pass away due to other conditions, i.e., heart disease, stroke, or other health issues, before the prostate cancer effects. But with that said, PC can affect nearby organs such as bladder cancer, high rates to those men who smoke, the bones, or colon cancer. Check with your insurance b/c PET scans may not be covered in your plan. Hope that helps. Respectfully, ZapKU

deano58 profile image
deano58 in reply toGemlin_

PSA must be at least 2.0 to be detectable by the PSMA PET/CT scan

Gemlin_ profile image
Gemlin_ in reply todeano58

The most updated guideline released by the European Association of Urology (EAU) suggests the use of PSMA-PET/CT imaging in any case of biochemical recurrence, i.e., PSA > 0.2 ng/mL, after radical prostatectomy.

Tall_Allen profile image
Tall_Allen

You might go to a radiation oncologist rather than a urologist. They're the ones who know and treat this sort of thing.

kenner profile image
kenner in reply toTall_Allen

I need to be referred by my Urologist first.

pilot52 profile image
pilot52 in reply tokenner

Are you being treated on a campus where you have both or are you seeing private practice guys....I see both when necessary but at Duke and MD Anderson...Just a thought . I did not scan the rest of the post just thinking out loud...Blue Skies

kenner profile image
kenner in reply topilot52

I am in Canada things are different here.I go to our resident Urologist who will refer me to a larger regional hospital for more evaluation.

Hirsch profile image
Hirsch in reply tokenner

How about a medical oncologist?

Wow, so similar. My husband had his 19 yrs ago and the psa crept up from 0.0 to now 2.0 over the last 18 months. His Gleason score at surgery was 4. He didn't want the hormone treatment, to him, he said that would be worse. He is starting his radiation treatment in a week. My heart goes out to you on whatever you decide. ZapKU

kenner profile image
kenner in reply to

Thank you so much for your kindness. I always knew I would be dealing with this again. I am much luckier than many who have long passed.I hope your husband comes out OK!Please keep me posted on his progress.Thanks again.

E2-Guy profile image
E2-Guy in reply to

An RP with a "Gleason of 4". That is very unusual.

in reply toE2-Guy

Oh, why is a Gleason score of strange? I have to go look in our files.

E2-Guy profile image
E2-Guy in reply to

google.com/url?sa=t&rct=j&q...

google.com/url?sa=t&rct=j&q...

in reply toE2-Guy

Thank you ronronHU, I have tried to be very frugal about medical records, having most every bit over the last 10-15 yrs. except this was 5/25/2001 an I do not have that record. I was pretty sure but now I question myself due to your post. Now I am about 80% positive it was a Gleason 4. CM, my husband of 28 yrs (today) is thinking the same. He had 5 biopsies and 4 came back cancerous. The other weird thing is that the American Cancer Association recommended that all men should get a PSA test annually at age 50 but he was 48 at the time. The recommendation may have changed since then. Anyway, I have made myself a note to write the doc and hospital for the report, just so I know. I still want to know why is it strange?

Hi Kenner, You said you got a shot of Lipton but didn’t know about it. Just curious, how did it affect you besides the nausea for 2 months? Did your PSAs drop to zero? Did you know what it was before your doc gave it to you?? My husbands urologist said “I can give you the shot right now”. My husband said no he wanted to know more about it first. It seemed to him (my husband) that the urologist was pushing it. My husband hasn’t went back since. He found another urologist and started seeing the radiation oncologist. Someone (on this site) suggested to see a radiation oncologist (RO) which is good advice. Thank you for sharing your experience. ZapKU

kenner profile image
kenner in reply to

I only found out that I was given a shot as my niece was pregnant and complained of her morning sickness and aversion to meat.I also had a terrible smell in my nose...everything smelled dirty...a sweaty odor.

in reply tokenner

Kenner, So sorry to hear about your experience with the hormone shot. My husband, CM, read the side effects of 1) gynecomastia is enlarged male breast tissue, 2) mood swings 3) depression 4) complete impotence, and/or 5) voice changes. He is considered obese by the body mass index and earlier in his years being much heavier, he had “fatty” areas that he hated. He lost weight and they decreased but if he got that shot, he figured they would be worse. In our opinion, a doc should have explained all these effects. Even though I was in health care or 40 years, it is a crying shame the way health care practices have deteriorated in morals without educating the patient. That’s about the best way I can opine about it. I hope your experience was just nausea.

kenner profile image
kenner in reply to

I am not willing to give up my love of women

Great job on those 20 years. Gives hope to many of us. This unfortunate uptick is said inevitable. Have these twenty years been goo for you ? It sounds like you’re due for an oil change and turn up . I make lite. Forgive me . I personally wouldn’t wait till

Later to check it out better. At the same time you’re still undetectable ? Please inform us what the dr says . APC is like the Mob. You think that you’re out —- but they pull you back in . I’ve been clear 4 years now. Praying for more time before a return . Take care

kenner profile image
kenner in reply to

Try and enjoy everyday. I have no regrets...other than never having the energy I had before RP.

in reply tokenner

👏🏼👏🏼👏🏼

SooHwa99 profile image
SooHwa99

I was 7 also prior to my surgery in April of this year. I was never undetectable. Peak post op PSA was 0.13 in October of this year. I just finished 34 Radiation Treatment and ADT for four month. It actually was nearly as bad as I though. I was very fearful of the radiation so soon post op, but so far so good.

in reply toSooHwa99

Hi SooHwa99, am C.M.s wife. Cm had a radical prostatectomy in 2001. He was cancer-free for 15 yrs until 2 yrs ago when his PSA was no longer 0.0. Since then it had increased to 2.1 and his doc recommended radiation treatments. CM wants to know how does the radiation is given. Is it done from the exterior of the body or through the rectum. He goes for his “simulation” next Wednesday. Of course questions arise on weekends, right? Thank you in advance of your experience.

SooHwa99 profile image
SooHwa99 in reply to

At the simulation they will instill solution into his bladder via a urinary catheter so they can map the area that will be treated. It is relatively painless. He will also most like receive three small tattoos the size of a mark of a pencil, tiny, tiny marks so that they can line him up appropriately each session. They will also make a mold of his legs with a contained item similar sort of to foam expanding insulation. Totally painless also. It is for proper position on the table.

Please see the link below. Most places utilize a LINAC machine. You lay on a table and are positioned correctly. They usually take a mini CT each day to assess the fullness of your bladder and the emptiness of your rectum. They have specs of how full you should be to minimize damage to the rectum and surrounding tissues.

The plates for the CT are on either side of you and the LINAC is right over your abdomen. When that is done the the machine moves into position underneath you and makes two complete circles around your body and then it is done. It literally takes longer to get into position then to have the radiation and driving to where your will be having it done.

It is all completely painless. I have had a bit of urinary urgency, but it seems to be quickly dissipating.

They are so precise now days most people will have very mild if any symptoms.

Tell him not to be to fearful it actually wasn't to horrible. No drinking over a liter of water each day and trying to hold it...LOL that was special...LOL. I drove myself most days and afterward went to the gym to work out with weights as I also and on a 6 month run of ADT (Lupron monthly and Casodex daily). I think the ADT is more of an issue to be honest.

It will go by very fast. I am always so anxious about all these things too, but my fears always seem to be much, much worse than the reality. Obviously some people can and do have problems, but I think they are much less than years ago.

Wishing you all the best in your journey. I pray that I can go that long. He is actually quite fortunate in some ways, although I know it doesn't feel like it right now...big, big hugs!

radiologyinfo.org/en/info.c...

marlins1 profile image
marlins1

20yr on the first go around! Well done. If the scans are negative, do the Radiation. Not that bad, maybe you will get another 20yrs!

You are a very very lucky man. 20 years great news with no treatments.

E2-Guy profile image
E2-Guy

Hello Kenner,

Just a suggestion from a guy who is having great results with transdermal estradiol (tE2).

Brief overview of my history:

Currently 76 years old

RP 15 years ago

Pelvic radiation recommended in 2015 when PSA reached 0.6 (I declined)

PSA rising slowly over the years to 1.3 in 2017

68Ga-PSMA PET scan in AU

RP surgery to remove 8 identified lymph nodes in 2017

PSA decreased to 0.54

PSA increased to 0.71 in 2018...Lupron recommended (I declined)

Started applying tE2 gel

PSA today is <0.01

Only side effect is minor gynecomastia...feeling great!

I wish that I had tried the tE2 gel prior to having the LN surgery.

Richard Wassersug (my mentor) is the authority on this subject.

My best to you, Ron

kenner profile image
kenner in reply toE2-Guy

Thanks for the tip...if I am going to get treatment that takes away my quality of life....well I don't want to go there. Your treatment is something I might try. Thank you.

E2-Guy profile image
E2-Guy in reply tokenner

My QOL has not been affected by the tE2 regimen one iota!

kenner profile image
kenner in reply toE2-Guy

Thank you!

in reply toE2-Guy

I appreciate your history sharing. Pardon my question: what is AU?

E2-Guy profile image
E2-Guy in reply to

I had the 68Ga PSMA scan done in Melbourne, Australia since it was only $600. The entire trip cost me less than the $2650 that UCLA was charging.

j-o-h-n profile image
j-o-h-n

For me the 39 sessions of frying were a piece of cake.... but it's the residual effect years later (screwed up my left kidney)... But that was many years ago.... the newer zapping machines are improved and even have backup cameras...not to mention keyless entry and ignitions...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/29/2020 12:57 PM EST

monte1111 profile image
monte1111 in reply toj-o-h-n

So now your left kidney looks more like a banana than a bean? I hear the new zapping machines are operated by teenage gamers in India. You know it's coming. Can't understand half of what doctor says, so I guess it doesn't matter.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

I think you meant a banana split.... "We have a velly velly high tech system said the bobble head Ramish....as he turned the color of your nipples green"...You can interpret most radiologist's advice as "take two and hit to left"....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/01/2020 12:15 AM EST

monte1111 profile image
monte1111 in reply toj-o-h-n

I said "Hit to right! Hit to right!" Oh, well. Now you got two banana splits. We so velly velly solly.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Ooooo I thought you said "the other right"..... Solly Sahib...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/01/2020 5:32 PM EST

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