Active Surveilance

My Active Surveillance experience:
I was diagnosed with a small Gleason 6 tumor 9 years ago, 1 or 2 out of 12 biopsied. For most of those 9 years I had color dopler exams every 6 months, MRI’s every other 6 months, 2 or 3 biopsy’s etc, everything was good. No one ever recommended having it treated, just watch and wait and react if required. Well, last August my MRI showed things starting to move in the wrong direction. An MRI guided biopsy confirmed this and my Dr. suggested we get treatment by January, no panic, just don’t wait too long. My labs were reviewed by Johns Hopkins and my Gleason 6 was now a 7, a 4-3 7. Bad news.
In September my Dr called. I had elected to do Proton therapy, but he told me, after your done you’ll need 4 months of hormone therapy at least. Given my Gleason score Proton therapy would only give me a 70% chance of a cure. I thought about this and said no way, I don’t want boobs and Its not for me. I decided to have surgery to be sure it was out and done and I would know how the lymph nodes looked etc. I had surgery the end of November. Pretty quick turnover from late August to November, just over 90 days.
Not quick enough, my surgery went very well (USC Keck, really good group) but unfortunately a very small amount of cancer, less than 5 mm in one spot had gotten out of the capsule, now I was a T3a+. They recommended radiation within a few months after surgery, I said, no, lets see how the psa looks and then decide. They are OK with that approach. I go in for my psa test in a few weeks and we’ll see how it goes. If your in an active surveillance situation let me give you some advice.

1) Understand by the time something changes there is a good chance you won’t catch up with it and will end up in the next phase of the disease prior to being able to do anything.
2) Your treatment options are reduced the further down the line you go.
3) Figure out what you want to do, get the best people available and do something before you have to.
I had years to make a move and didn’t. Now, after surgery, (that is no picnic by the way but if its done by experts its no big deal either, everything works for me and I’m not quite 8 weeks out), I’m still facing additional treatment that may have all the bad side effects I risked in surgery ( but didn’t get thankfully ) and its still not over. Sometimes the right answer is to just do it, and not wait for something better. My situation could be much much worse and I am grateful its not, however, it could also be much much better and I’m kicking myself in the rear for not taking the bull by the horns.
Everybody’s situation is different, I get it, but understand the risks, they are significant.


Thanks

Vistacal, you information regarding your experience with AS should help others. Thank you for posting. It seems to me while you are again waiting for treatment you might want to do some genetic testing. Here is a recent NEJM article https://www.nejm.org/doi/full/10.1056/NEJMoa1603144. Also you won't get necessarily get enlarged breasts from hormone treatment and it might help if you decide on radiation.

69 yrs., marathon runner, 44 3D-CRT/IMRT Radiation delivered via 3D-CRT in 1.8 Gy minimum dose fractions to a total of 79.2 Gy., 10.5.18. PSA .012, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. SpaceOar 9.6.18, testosterone <.7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI w/ contrast 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 94 yrs.

Vistacal, Very sorry to read of your experience. What institution's AS program were you enrolled in?

I have been in Johns Hopkins's AS program for ten years, and, so far, no progression. At this time, about 45 percent of the original enrollees have moved to interventional treatment, most within the first two years, as they had confirmatory fusion biopsies.

Unfortunately, with RP, the recurrence rate is about 32 percent (studies range from 25 to 40 percent), so you are having to do salvage treatment. Not sure how your progression was missed with regular testing, but it makes the point that we still need better diagnostic tools for this disease. Good luck to you.

AS, Waiting for progression? I am far from a medical professional and only offer the occasional opinion but I have seen so many, on this forum, wait for bad news. Just one man's opinion.

a bad deal all the way around. seems like there is still a wait and see approach which honestly i just don't agree with. good luck to you man.

Personally I don't believe that <2% belief. It assumes the biopsy taken represents all your prostate which it doesn't. Biopsies are only a guide as it is only a sample.

jasperx10 said...
Personally I don't believe that <2% belief. It assumes the biopsy taken represents all your prostate which it doesn't. Biopsies are only a guide as it is only a sample.

You don’t believe data?? Strange. This is the big picture, not anecdotal information. There are no “assumptions”...these are the outcomes of large populations of men with similar diagnosis.

Blackjack said...


You don’t believe data?? Strange. This is the big picture, not anecdotal information. There are no “assumptions”...these are the outcomes of large populations of men with similar diagnosis.

Yes, I don't have any faith in those numbers when they're based on biopsy. Biopsies are a guide only. After surgery many get their cancer grade changed.

In any case, this doesn't help Vistacal. I wish him well in his treatment ahead.

Blackjack is correct with his <2% number. Johns Hopkins has 20 years of data to support it.

Now, the difference of opinion is probably due to the protocol by which JH tells men to leave the program and seek treatment if any significant upgrade, such as any G4, is found in later testing. Because JH coaxes the upgrade cases into treatment as soon as danger is sensed, the amount who die or suffer metastasis is under 2 percent.

There is seemingly a lack of understanding of what this <2% is. It is the percentage of men who died or had metastatic Stage 4 prostate cancer. Vistacal's cancer is Stage 3 and he is NOT among the 2% of men with Stage 4 prostate cancer. He is still among the group where the overall 15-year metastatis-free survival rate is 99.4%!!!! Since it is being treated with curative intent, it is extremely unlikely that his cancer will go to Stage 4 and even more remote that he will die from it. He will in all probability be cured.

It should also be clear from the John's Hopkins study, that over 15 years, 56% of men in JH's AS program were reclassified to higher grade PC or higher volume and most required treatment. 36% of patients who started JH's AS program eventually sought treatment and it was most likely curative. Vistacal is among this 56% who progressed and the 36% who sought curative treatment. He should be cured. JH seem to have lost track of the remaining 14% or they died. Here are some quotes from the study. If you start JH's AS program there only is a 1 in 2 chance that you can stay on it.

In 467 men (36%), disease was reclassified during biopsy at a median of 2.0 years (range, 0.3 to 16.0 years) after enrollment. At 5, 10, and 15 years after the start of surveillance, the cumulative incidence of any biopsy reclassification was 35%, 49%, and 56%.

As of June 2014, 642 men (50%) were active in the program, 470 (36%) underwent curative intervention, and 186 (14%) were undecided about treatment modality, withdrew, were lost to follow-up, or died. Forty-seven died as a result of causes other than prostate cancer, and two died as a result of prostate cancer

I find it terrible that in a support group that misinformation is being disseminated that could upset the OP who came here for help and understanding.

Certainly this shows AS is not without some risk. As somebody above said treatment for prostate cancer is about what kind of gambler or risk taker you are. No easy, certain answers on any choice. This blog is great because it presents the points of view from posters across the whole spectrum of choices, it provides a great service to men seeking information on a difficult choice...

I didn’t forget anything, the time between seeing a change (MRI) and treatment was about 80 days, very fast in today’s world of medical appointments etc. , my point was it’s wasn’t fast enough . Sometimes when things move they move quickly . I think the key is to move forward with treatment prior to needing it . That does not mean having a hair trigger, that means just coming to terms with the risks and being proactive . I had nine years of watching with no treatment , that was a good thing , But Had I acted sooner, there’s a very good chance I would be looking at no further treatment . I have several friends who were proactive and are in that situation, happily . I wasn’t uninformed or ill-equipped , I simply took too much time. Thanks for the input

Best wishes for Vistical for a long future. Great discussion guys, thank you.