Anyone just blown off follow up PSA testing?

I know nobody is going to reply to this is as being a sound strategy.

For those who had G6 and very minute amount of tumor with very minimal chance of recurrence and probably could've just done AS but were too worried to do so, would it be the end of the world to not do follow up PSA's?

All of us are different. Some hear the word "C" and it will forever define them and it will be an omnipresent experience and concern. Some will get the dx and do something and just want to move on not letting the experience define them in any manner. A this is just a bump in the road mentality.

Clearly, there is some risk involved in not doing all these PSA tests, but how risky is it really? Yes, you could end up perishing in some rare cases, but, again, how likely is it?

I'm of the mind that these 3-4 month PSA tests are overkill and am pondering just doing an annual one. I did the 3 month test, and think I'm going to bypass the next two. I'm feeling like once a year is plenty. Just curious if anyone has done that, and if so, why they chose to?

Actually I did skip my September check...I decided on my own to reduce to one per year. Several reasons including the chicken s--t one.

With my insurance company, if I decline what is considered "standard of care" tests and reviews, they can refuse (and we have seen this happen) to cover additional issues that would have been discovered as part of the testing.

Part of the contract.

I don't refuse to do prescribed tests as a result.

I figure that if I've come this far, the schedule of 6 week then 3 months then 6 months for the follow-up PSA tests is not to big of a deal for me.

Wings of Eagles said...
Dear Inchoation,
Interesting name, where is that from? We are not coming from the same perspective, for me I have advanced prostate cancer, and the main reason it was not detected and advanced outside my prostate to my bones, is because I did not have the courage to do a biopsy or even a follow up PSA test for 3 1/2 years after they found it was rising, for me there is no question about having recurring PSA tests now. I waited too long,believing I was in good health, no symptoms, etc. I lost my Insurance at that time 3 1/2 years ago and did not have any until I was fortunate to get a employer where I now have Cigna. I am now a $100,000 man and they pay for the test every 3 months. I try not to let the "number" define my outlook though. I wish you the best, Take care my Brother. I am a strong believer in FAITH. I encourage you to keep vigilant and think about those you love,and keep up your determination to stay healthy as possible.

Hello, Wings... Inchoation happened to be the word of the day on dictionary.com when I registered. I liked the meaning... a beginning...origin. Just beginning...rudimentary...immature. That defines me at the early stage of dealing with life AC (after cancer).

There are several factors swirling behind my asking of the question. One of the main ones is I'm pondering putting myself in a position where I no longer have insurance. As of now, I pay no annual premium just the deductible amount. I've been meaning to call around to see what a PSA test would run me without insurance. I guess I could look at some past bills, but I don't think those are accurate descriptions of what a PSA test actually costs but more of what the provider can get away with billing the insurance. If I find it's a tolerable sum, I may continue to get the testing, but I'm not sure how closely I'm going to adhere to the suggested intervals. Most suggested things are in favor of the provider and not the receiver...oil change at 3k miles would be an example. You can go double that with no issue. Not changing oil won't kill you, though.

I just wanted to see an assemblage of opinion as it may be influential in me sticking to the original plan suggested by my surgeon. Strangely, my uro told me he'd see me in 4 months after my last one. I thought I was on the 3 month plan but 4 sounds better.

Lotsahope,
You are very right,I agree with you. Have to move forward now, and not look back,with Lots of Hope. I like your "moniker". Take care and sorry you need to be here, but welcome to our brotherhood, there are a lot of encouraging people on this site! from Dan in Southern Cal.

Inchoation, Thanks for your info, and on your profile, especially your Number 1 "hobby"-Keep the Faith Brother-"Wings"

I love it, Chuck! You got the 3 monther and then told to wait for what would be basically an annual checkup. I have no issue with an annual...this checking so often only months apart seems to be potentially a lot of overkill very similar to the bone scan we went through. I read the odds of cancer spreading to bone in many cases with numbers like ours is less than 1% yet most of us are sent off for the scan.

The issue any of us could face is "micro metastasis". That is the "ooooooh" moment where fear takes hold when they tell you that some teeny tiny cancerous cell escapes the prostate and settles elsewhere. That could've happened to any of us. Fortunately, if my understanding is correct, the lower the Gleason the better the chance that the cancer was confined to the capsule. That was one of the reasons I was so happy my Gleason was downgraded from 7 to 6. Hopefully, that is a good sign no micro metastasis took place.

An option might be to get your doc to write you a script for the PSA exam at labcorp. Then you could get it done at your convenience.

I am the type that would avoid Dr. appointments too but I did do my three month PSA tests. Third one came back with elevated PSA and they had me do another one within the two weeks to be sure. Now I'm back on the roller coaster ride. I thought I was done with this after the RP. Do it, it takes little time and IF you have rising PSA the sooner you are able to get more treatment the better your chances are. crap, I thought I was done with this crap.

Inchoation said...
I love it, Chuck! You got the 3 monther and then told to wait for what would be basically an annual checkup. I have no issue with an annual...this checking so often only months apart seems to be potentially a lot of overkill very similar to the bone scan we went through. I read the odds of cancer spreading to bone in many cases with numbers like ours is less than 1% yet most of us are sent off for the scan.

The issue any of us could face is "micro metastasis". That is the "ooooooh" moment where fear takes hold when they tell you that some teeny tiny cancerous cell escapes the prostate and settles elsewhere. That could've happened to any of us. Fortunately, if my understanding is correct, the lower the Gleason the better the chance that the cancer was confined to the capsule. That was one of the reasons I was so happy my Gleason was downgraded from 7 to 6. Hopefully, that is a good sign no micro metastasis took place.

Johns Hopkins did a study, a number of years ago, which involved 17,000 Gleason 6 patients who underwent RRP -- these were TRUE G 6's that remained a 6 in the pathology reports. Out of 17,000, the incidents of metastasis was exactly zero. So it really is HIGHLY unlikely that there would be any spreading.

Even as such, my local uro, who did my biopsy, still sent me in for a bone scan and abdominal CT -- while telling me in advance that the results would be clear. My uro/surgeon at Mayo said he did not know why my local uro even bothered to order those tests.

For many uros, it is standard procedure to order these tests, if for any other reason just to establish baseline readings.

But another thought just hit me -- perhaps those tests are valuable in the unlikely event that there IS high risk PC that was not detected by the biopsy that could have spread. Getting a G6 clinical report from a biopsy, while unnerving, is much preferable to higher scores, there still is that 20+% of biopsies that only reach the G6's and happen to miss more aggressive tumors.

So, I guess in that one perspective, it doesn't hurt to do those scans even with low risk clinical reports.

Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Pathology showed Gleason 3 + 3, pT2c, N0, MX, R1
adenocarcinoma of the prostate.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, 9/9/13 PSA <0.1. PSA tests now annual.
Firm erections now briefly happening in early mornings, 2 years post-op.

in your case annual vs 3-month testing could mean the difference between a treatable or systemic recurrence. but I'm sure I'm not telling you anything you don't already know and you've already ruled out radiation. good luck.

ed

I've skipped post-surgery PSA testing if it didn't fit in with other tests that are part of a routine physical exam. The chances of reoccurence at nearly 8 years are close to zero.

my routine physical involves a blood test. PSA test is just a check of a box. once you've had cancer it can always come back. if you don't plan to treat a recurrence and you'd rather know about one when you start having symptoms then I can see skipping the PSA test.

ed