Does the fear of recurrence ever go away (or even subside)

"It is what it is."

I'm way more concerned about getting killed driving home from work than I am a recurrence.

We can do this said...
Would love to hear anyone else's successful coping strategies.

What really helped me was learning about prostate cancer...learning more than my doctor/surgeon told me. What I learned is that PC is one of the most frequently occurring, and least lethal of all cancers. It's lethal for a fairly substantial number of the small numbers of high-risk men, a very small number of the larger intermediate-risk men, and virtually unheard of for the very large group of low-risk men like my case (and yours; my case characteristics were a bit worse than yours). What I learned was that high-, intermediate- and low-risk cases are like completely different diseases; silly that they are all called the same thing. I learned doctors are fighting (arguing) over whether low-risk PC cases should even be called "cancer" since they are not lethal. I also learned that for cases like mine, treatment makes absolutely no difference on my longevity; there is no longevity benefit at all, only harms. I also learned that the "Say/Do" ratio of doctors who treat PC cases is poor. That is, the vast majority reply to medical surveys saying that low-risk cases should not pursue immediate treatment, but in practice they still mostly "nudge" patients, skillfully while portraying concern for the patient's best interests, towards the lucrative choice (for them) of treatment.

I wish I had learned most of these things before I pursued an immediate, unnecessary aggressive treatment (surgery) at age 50.

Now that I realize these things, I know that it's silly for me to worry about dying from PC (which really was a worry at one time!), or even recurring PC. My coping strategy was to look myself in the mirror a number of years ago and 'fess-up to the fact that I was never at risk...

Hope that my strategy also helps you. My PSA test result is not even the first thing I look for when I get my blood work results online in advance of my annual physical checkup.

Post Edited (NKinney) : 10/4/2017 2:19:29 PM (GMT-6)

Hi We can do this...

I am right there with you. I have a question about your PSA history. you were May15 0.01, Nov15 0.02 Feb16 0.04 May16 0.01 May17 <0.002 Are those the same labs? Was there concern with G6 and neg margins as to why your psa was .04? is that <.002 a typo or real.

As you can see from my signature there is a bump in my psa.

As to the anxiety...I think its our new normal. We need to try to stay out of the rabbit holes as much as we can...

Thanks guys. Good suggestions, all appreciated.

Hogo, those tests came from four different labs - a function of moving house and then country. Yes that last number is real - 0.002. I didn't ask for an ultra-sensitive test, that was the standard one. I have mixed feelings about the level of specificity....double edged sword in my experience.

Good question and discussion. I have moments of pre-decision anxiety but I try to get busy and distract myself. Denis

I used to be very anxious every time I came due for a PSA draw. At the five year mark the inevitable happened and I got the bad news...recurrence. My worst fears had been realized. I did the IMRT and again, post SRT the numbers started to climb. Once I got my head around the fact that I would never be cured of cancer, I decided I'd just live as long as practicable WITH cancer. Once I accepted my situation I no longer have that anxiety. I know I have cancer, so there's only one thing to do...as others have said, live life to the fullest and "it is what it is". I have a good medical oncologist and I have a plan. I just don't sweat it anymore since I realized that the death rate on earth is still 100%.

I have less fear of reoccurrence and more fear of the phlebotomist missing the vein and leaving a big nasty bruise.

No! I have seen way too many AS guys change course to anything from low-intermediate to unfavorable intermediate and worse. I'm sorry to be so pessimistic but I personally believe it is a matter of time. Had urologist tell me that they do their best and hope we die of something else before recurrence occurs. Remember, this is just me based on what I see on this forum and no real peer reviewed research studies to back up my humble opinion.

I am nearly 4 years since initial very metastatic diagnosis, and a ridiculously high PSA to start. I get monthly blood work and PSAs. I have naturally been pleased when PSAs drop or remain stable on treatments. I've been on pins and needles wondering when PSA might start up again. I've been very concerned when PSA has risen a lot. It comes with the territory. I try to focus on getting to the best doctor(s) and exploring as many treatment option(s) as I can, and then making treatment decisions based on their collective advice and my own values, and accepting the reality of where the PSA and imaging results may go thereafter, even if its the biggest roller coaster I could imagine. Imaging results, symptoms (or lack of symptoms), and other things taken in totality can often outweigh the actual number or minor trends on specific PSA test(s). I prefer to spend more of my mental energy on positive things in the current week, rather than ruminating over past things, or fearfully speculating about potentially dire things in the future. Sometimes that's easier to say than to do, of course, but, it has seemed to get easier with the passing months and years.

Charles

I'm still relatively new to all things PCa, having been diagnosed only a year ago. We were watching my PSA, though, for 5 or 6 years prior to that, but it was lower then. The first 6 months were rough for me, even though I was favorable intermediate risk. Looking back, it was just the monsters in the mind at play.

With my pathology, it is highly doubtful that I would die from PCa. Something else will likely get me first. With my medical history, there are several other candidates. . . I've had my "play dates" with the surgeons and specialists in the past. I have now managed to relegate my concerns about PCa to the same place as those about all of my other chronic medical issues. That area has one rule, which is "There is nothing wrong until there is something wrong." I have learned to tolerate the testing cycles and only worry about what "could" go wrong after it already has gone wrong. There's nothing I can do to stop these things, anyway.

All of the above.

Fear? Or, concern? Fear=bad. Concern=good.

I no longer fear and have less concern, but still healthy concern. My treatment has worked well, thankfully, and if I do have a recurrence, I know there are many effective treatments I can still use, many of which weren't available when I was diagnosed. I am confident that situation will continue to improve.

Looking at your signature, I would put recurrence out of my mind. Still get tested regularly, but don't fear or worry. I'm sure you have bigger fish to fry than a PCa recurrence.

George’s post helps to illustrate—as long as one looks closely—exactly how small your concern should be, "We can do this"…and why “no treatment unless/until needed” is so highly recommended for low risk men. Let's have some fun with numbers in your specific case to understand it more fully...


George’s illustrative post starts out (2nd sentence) with “If you get a recurrence now…” Of course, your years of post-RP PSA tests show absolutely no indication whatsoever that you would have a recurrence (biochemical recurrence, or BCR) now, or in the future…but putting that aside for a second (we will come back to that) one can use the MSKCC nomograms to examine exactly what your statistical likelihood of a BCR, which was George’s opening “If” statement.

I plugged in your case history HERE, and to no surprise your 10-year likelihood of BCR is about 2%. All cases similar to yours, whether they have treatment or not, have the same BCR likelihood. In other words, progression happens in some rare cases of initially low-risk men…and it happens at the same rate whether one has immediate treatment or deferred treatment.

OK, then after determining the 2% likelihood of George’s “If” statement, we can open his link to read and understand the results a little bit more thoroughly…

George’s comment was that if the 2% probability scenario came true and you had BCR now (close to 3.5-years since RP; the study groups men into a 3.1 – 5.9 years category), and you then did nothing to treat it further, your chances of PC-specific mortality in the next 10-years was 7.8%. These probabilities are multiplicative, so the overall probability of someone with your case history having BCR and also dying within 10-years (if you do nothing about it, per George’s paper; more discussion on that in a minute) are:

2% x 7.8% = 0.15%, or a bit more than 1 in 1,000

But wait. The 7.8% probability (for men who have BCR 3.1 – 5.9 years after RP) includes ALL cases lumped together, from high- to low-risk cases. We know that makes no sense; they are really different diseases. The paper’s abstract points out the obvious by stating: “…increased pathologic Gleason score, advanced tumor stage, and rapid PSA doubling time (DT) predicted systemic progression and death from PCa,” and of course none of these apply to you. So the 7.8% death 10-years after BCR is heavily swayed by those who have completely different (advanced) cases compared to yours. The full-paper probably broke down the results by risk-category, but the abstract only summarized combined results. The 7.8% certainly grossly overstates the situation for low-risk men; for low-risk men a reasonable estimate might be closer to 1%.

But wait, there’s even more. It is absolutely reasonable given your nearly 3.5 years of clinically undetectable PSA scores, and given that your PSA doubling time is, well, zero, it seems more than reasonable to predict that IF you were to have BCR (two consecutive PSA results above 0.2 ng/mL) it wouldn’t happen until at least the paper’s next category grouping of >5.9 years…in which case the 10-year probability of PC-specific death reduces from 7.8% to 4.7%. But, again, this is for all cases. A much more reasonable number for low-risk men (taking a similar % reduction as above) might be closer to 0.5%.

So, now we can use these numbers to calculate a prediction on just how unlucky you’d need to be…and how much you should really worry about BCR and death within 10-years (if you do nothing) in your low-risk case:

2% x 0.5% = 0.01%, or about 1 in 10,000, if you do nothing post-BCR

Are you that 1 in 10,000? Maybe you should buy a lotto ticket. The risk is not zero, but maybe you should assess your diet, lifestyle & health history and determine your probability of dying of heart attack/disease.



Yes, I thought that while his opening sentence was clear and correct ("You do not have to be afraid."), George’s post, if not more fully explained/understood, had a high likelihood of misleading readers.

As with almost everything having to do with PC, the answer to almost EVERY question is directly dependent upon your specific case characteristics, and it makes NO SENSE to blend responses from polar opposite types of cases. The ONLY thing relevant for you is similar cases. Based on the numbers discussed here, I would think most people with cases similar to "We can do this" have more significant things to worry about than the minuscule risk of PC BCR/death.

Post Edited (NKinney) : 10/6/2017 7:54:46 AM (GMT-6)