Crap, I thought I was cured.

Hi, it's been a few years since I have been on a message board (I used to frequent Health Message Boards) and entering this one I recognize you, Tall Allen. It's great you are here and I am comforted by your consistent presence.

I'd love yours or anybody else's assessment of where I am now at. I have not really been focusing on prostate cancer or new practices, letting myself enjoy a period of hope and blissful ignorance.

I have had a couple years believing that I was likely cured. After a couple years of nothing to challenge my belief otherwise, I am now bodyslammed (just like I was after initial diagnosis) with the understanding that my cancer has likely return.

It's different with recurrence, isn't it? Before there was the challenge of working towards a victory of defeating your enemy. Now it's acceptance of a likely life long relationship with eternal treatment. Unless I am wrong, this is how I feel.

I'm 55. At 50 I had a PSA of 65, 8 of 12 cores positive, a Gleason score of 4+3=7 and seminal vesicle involvement. I had brachytherapy and IMRT along with 18 months of ADT. After treatment my PSA went to .1. I was left osteoporotic with a t score of -3.2 (I had osteoporosis prior to treatment but didn't really understand it like I do now. I did do forteo injections for 8 months and my t score is now down to -2.7).

For two years my PSA rose from .1 to .4 and bounced around a bit. As I produce a small amount of ejaculate after orgasm I assumed there was some healthy tissue left in my prostate and felt the .4 was normal.

Between January of this year and now seven months later my PSA rose from .38 to .95. I guess that's a doubling of less than 6 months.o

1. Is this period an accurate indicator? I'm not sure what the standard procedure is in extracting doubling times. Any doubling at any time?

In January I lost my mother (and a wonderful friend). She lived next door to me with my father and I have been tending to them for a couple years. After she passed I have been experiencing intense grief and stress and I can't help but find it suspicious that right after my mother died my PSA shot up. My mother made me promise I would not be sad and feel pain after she died. I have failed miserably but in light of my apparent recurrence I am going to obey her desire as much as possible in the interest of trying to save her son's life.

2. Any thought on that? Stress, grief and PSA progression?

My oncologist here at Hollings Cancer Center, in Charleston, SC. agrees with waiting for another 3 months to confirm further progression. I know 2 plus nadir is standard for recurrence with radiation, but in light of this recent strong bounce neither of us are really expecting a drop.

He is mentioning getting on a clinical trial of ProstVac for non castrate resistant, recurrent PCA.

3. ProstVac? What I have read isn't extremely compelling but I don't know anything about it. Any thoughts?

Sorry about this novel length post but one last question.

Using my doubling time and using a model posted on The Journal Of Clinical Oncology I am seeing a very sobering mortality rate of 70% at fifteen years with my parameters.

4. Has there been enough radical improvements in treatment since the data was collected for these kind of studies that skews rates of mortality in now more favorable direction?

Ok, two more.

5. It seems like there has been some advancement over the last few years. Is back on hormone therapy still my best option right now? Any new suggested practices following recurrence?

6. If I am scanned and I have residual local disease what's the most preferred treatment these days? Cryo ablation? HIFU?

Many thanks for anybody that read through all this.

Michael

Post Edited (Yarbo3) : 8/27/2016 7:11:53 AM (GMT-6)

Bummer. You've had a go of it this year.

Question 2. No Michael, your PSA was 65. Quite a bit of grade 4 cells with seminal invasion. To my eye...you've actually done well in spite of the grief and stress.

If this is indeed a recurrence Michael, it's due to the fact that cancer remained after initial treatment.

A couple of threads on this recently. Some do take credit for their continued remission. (Though other words are used to disguise this belief. Logic then dictates...if you have a recurrence or trouble, it's your fault. The unspoken insinuation: well, I won't say it)

It's not your fault. If you are recurring....it's simple....all of the cancer wasn't removed. Do not blame yourself man. Do not blame yourself. Yours was a tough case from the outset. That doesn't mean it's recurred....but, in my opinion, you've done well. For whatever that's worth.

Good luck to you and they'll be more along to address the mechanics of your situation....medically.

I'm sorry to hear of your mother's passing as well.

Hang in there man.

Hi Yarbo-

I am sorry to hear about the biochemical recurrence on the PCa. I am only 4 months post diagnosis and I am in aggressive treatment for metastatic PCa that includes a Prostvac clinical trial, so I can address that.

But first, yes there have been many advances in PCa treatment over the past few years, some of them even shift the paradigm (chemo is given early now in metastatic disease rather than waiting for castrate-resistance), and new clinical trials with new agents and/or new combinations of drugs are showing up with frequency. Especially important, the different stages of PCa seem to be getting more attention in research now- in the past, it seemed as though castrate-resistant PCa was the main axis of research.

Certainly immunotherapy is the hot button now for advances in a number of cancers, and Prostvac is one example as applied to PCa. At this point, the only approved immunotherapy for PCa of a very specific profile is Provenge, and that adds ~4 mos to median survival IIRC.

There is a Phase III study (PROSPECT) on Prostvac used to treat castrate resistant PCa due to make primary report soon, maybe early 2017 at latest. This study was preceded by Phase II work that indicated an 8.5 mo increase in median survival, again in castrate-resistant setting. I know that does not sound like a lot, but most other late therapies only yield 3-4 months extra time, so there is some early suggestion that Prostvac can be effective at reducing tumor burden over time.

But all of the above is directed at late-stage PCa. If immunotherapy works against CR-PCa, could it not be even more effective before onset of resistance? That notion is driving a number of studies on Prostvac now. I believe the trial your doctor might be thinking of is NCT02649439, managed at NIH. This is a Phase II trial that has no placebo arm- so everyone gets the vaccine, one arm just waits 6 months before starting the vaccine cycles, while the other gets it at the start.

I am on a trial that is testing standard of care for metastatic PCa (ADT + early chemo) in combination with Prostvac. With regard to vaccine, there is a primary injection, subcutaneous, followed by 6 booster injections separated by three weeks. The vaccine is almost stress free compared to my other therapies.

For my trial, NIH pays all of my travel expenses and gives $58 per diem for food and lodging if you have to travel. I fly out from Colorado every three weeks (only 2 more cycles to go!)

The medical care at NIH is stellar. It cannot be better from my perspective.

There is a lot more detail on Prostvac and my NIH experiences in the link in my sig below.


there are other approaches- A few forum members have relationships with Dr Eugene Kwon at Mayo- once your PSA gets high enough, he may be able to identify specific oligometastases by 11C-choline PET scan and zap/cut them. I understand cure is possible, but I do not know the numbers for success.

Good luck Yarbo

here's to fightin'

rf

Thank you all for your responses. I am extremely grateful for your lucid insights and support.
Rockyfords, thanks for the info on the ProstVac. My doc says he is a friend of the guy running the trial. He said I would be going to DC. I certainly hope you get great response from that combination you're on. It seems like quite a perfect storm to hit PCa with. That's comforting to hear there are so many new protocols being developed.
I've been focusing on a model of mortality rates and recurring PCa. Someone tell me to stop doing that please.....

Tall Allen, thanks for the boost. I remember before on the other message board there being some controversy with the administration. Seemed silly at the time and I'm happy this board is more evolved.

I am near 1.0 with my PSA. Nice to hear you think 2.1 is far away. Ok, I'll take it! The recent boost has me a bit freaked out though. So my current PSA doubling time is irreverent and not an appropriate gauge? Is PSADT only applicable pre-treatment? If so I never had that established as I had a PSA test five years before my reading of 65.

If doubling time is applicable after recurrence when do you figure it?

I JUST read the link about PSA boost and sex. Whoa! That a .4 boost or more after your last PSA test is possibly normal 18 months or more after radiation just changed my day! Allen, I KNEW you were the man!!!

I did not have sex before my last PSA reading for a couple weeks so as to not skew the results but none the less, it's now seems possible the bounce is ok.

Ok,ok, I'm not gonna panic. We'll see in three months.

Thanks a million times over for sharing that with me....

Michael

Well, when and how do you establish doubling times? Sorry, I'm a little confused on the subject.

Allen, you created that page didn't you? Thanks so much. I have never read that information before and it's a comfort that my current values may possibly be not abnormal. How much of a bounce did you have? My bounce is around .57 and it occurred roughly 36 months after radiation. Is it really possible this is an temporary aberration?

I was talking to my daughter about my PSA graph and she mentioned a website that people post and share their personal data as it applies to fertility. The service makes charts out of the input people provide and it's shared for other women to view and compare.

Are there any kind of graphs available anywhere of PSA tracking of pre and post treatment guys'll? It would be so useful to see timelines of PSA data that others have experienced on a graph. The reference would be a great potential anxiety reducer as it would help guys figure it where they are at in comparison to other's history.

Yes, of course, I know there is still a good chance this is not a simple bounce and I have recurrence, but my sentiment just went from feeling doomed and panic to being concerned. There is a sizable difference there.

Too bad not enough people contributed their charts. It's a good idea if there were enough participants.

I read somewhere that "nadir plus 2" was antiquated and most consider three consecutive rises the new standard. Talk about being lead astray.

Allen, this is a hard question to answer I know, but in your opinion, where does a patient stand these days with recurrence? I would imagine those mortality / longevity charts must be quite off due to new treatment options but I would like to get a REAL idea, if my cancer has truly return, what my future would look like.

My interest is not morbid, but practical. I own a business with 13 employees repairing pathology / histology instruments here in the southeast. We also sell refurbished units. It can be taxing and stressful at times and if I will be going down a road of fighting cancer I need to trim my involvement, perhaps to the point of stopping / selling all or part of the business in the interest of quality of life. I have lots of people and their families relying on me, including my father next door but I can't take on the world and cancer and live a decent life. Something's gotta go.

If it's likely I won't live longer than 10-20 years I'm not going to live it dealing with a business that's going to lessen it even more. If I am in recurrence I need to get very self protective.

It was rather tough to run a stressful, competitive business during my initial treatment. Between dealing with menupausal symptoms and tiredness it was often challenging. I don't think I want to relive that again. I don't feel as robust now honestly.

I hope I'm not asking too much here.

Post Edited (Yarbo3) : 8/28/2016 2:47:38 AM (GMT-6)

Hello Michael from another 55-year-old Michael. I also had the exact same treatment as you, even down to the duration of HT. Sorry to hear about your rise and I can certainly see why you'd be concerned.

For better or worse, I think you just need to tough things out for the next three months until you get your next PSA. I'm sure that's not easy given the stress of your job and the recent loss of your mom. But I think there's also a pretty decent chance that the increase is not a reoccurrence. To that end, I would assume it's not until you have evidence otherwise.

Hey, at our age, three months goes by pretty fast! (After all, summer is just about over and I feel like it just started.) Hang in there, minimize worrying about this and let's see what comes. We'll try and help.

I must be coming across a bit manic! Thank you all for helping me calm down. Behind my concern and fear is the reaction my oncologist had to my test. Not alarmed but concerned for sure. He immediately asked if I wanted to get a proactive MRI and it got me going. I'll take all your advice and slow down the hysteria.

Allen, I'm envious. I used to meditate quite a bit when I was younger and have often grieved getting away from it. I practiced Vipasana for a while and once did a ten day retreat that left me quite sublime. In meditation is contentment for sure and my meditating friends all share a calmness I love to be around. The reminder is well received. Maybe I'll get back on that zafu one day soon. (I will have to spray it down with Clorox as I'm sure it's impregnanted with mold spores. turn )

Michael, thanks for the perspective. Sound like we have a lot in common and thanks so much for the encouragement. I'm glad things are stable for you and may it stay that way. Yeah, it's been a though time for sure.

Yaamba, it sounds like me and your husband are in similar shoes right now. My wife and I are right there with you both. Let's keep an eye out for each other!

Panic aside, I am doing now with my questinable PSA rise what I've always practice and has done me well in business, in gardening, in having children, etc. Using data and imagination to pre visualize everybody possible scenario, ponder it and be prepared for dealing with it. I'm a slow thinker on difficult issues and need lots of time to sort through options. There is a sweet feeling of control you get when you churn out cause and effect events in your mind before it happens and think out solutions. It's done me well in the past but, yeah can put a mind through a lot of false high levels of anxiety for nothing.

That said, I can't find any real direction in how to properly calculate PSA doubling time. Is it the time between after treatment and a later PSA reading? Time between any two PSA test dates? I'm confused on this.

Michael


Michael

Yarbo, welcome to the forum.
I haven't posted on your thread till now, feeling I have nothing to add to the posts by many members more knowledgeable than I, and more experienced with a situation like yours. But since Redwing mentioned me, I might as well chime in.

Yup, I was the poster child for anxiety when I first got here, and two years later, when I was finally diagnosed. For the two years leading up to diagnosis, I was pretty much a nervous wreck. To Redwings point, looking back, I'll never get those two years back. What a waste.
Its good that you are being diligent, and are data driven, at least that minimizes emotion in your decision making. Meanwhile try to enjoy every day for what it is.
I truly hope you have no recurrence and this turns into a false alarm
Good luck, and again, welcome to a great place.

That doubling time calculator is simply a math aid. Some PSA reading at some time, enter them all, it does the math. I like to see 3 points to determine a trend. Two points can only give a straight line. Many natural processes are based on second order parabolic equations for which you need at least three points to curve fit.

What do you get if you take your latest three readings? If you have had a lengthy history of bouncing around .1 - .4, and now you have just one that's somewhat higher, then it seems you'll need to wait for at least another interval (maybe 3 months?) to get another number to see if you have an actual trend climbing above your wandering baseline.

I don't know if there are specific PSA values to be used or not. If you have PSA readings you think are not valid for whatever reason, then I wouldn't use them. If you have a few that you think form the basis for a trend calculation, then use the calculator to get the number. I don't think it's any more complicated than that.

And still, as our wise Tall Allen points out, if I understand correctly, until you hit 1.5 to 2 or so no one can or would do much of anything about it. As I've posted elsewhere, that's exactly where I'm having a difference of opinion with my new MO. He got all freaky and scan-happy about my 0.2 reading, which I think is a perfectly ok number since I only got off of ADT in March. We'll see where that goes from here.

Thanks, Yarbo. No images here, but you can use the email function in Healingwell to send them. Or, you can upload such things to imgur or other photo-sharing sites and post the link to them. It's easy to post links, you just use the simple html tags for it. It looks like this (you have to use square brackets instead of the curly ones in my example here- if I use the square ones it will grab it as an actual link, so this is just an example): {url}http://imgur.com/MkZzbNH{/url}.

I'm getting a PSA recheck Thursday to verify it's not just an anomalous reading (which I highly doubt it is). Then the MO says we'll talk in more depth. Thanks to this forum, I have confidence in what I will be challenging him about. The U of Mich RO group doesn't want to talk to me without a referral from my MO, so that puts a little "political" kink in it. I could pitch a fit and insist, but to me there's nothing urgent here so I'll have a bit of a chat with my MO and see what he has to back up his positions.

Yarbo3 said...
Redwing, thanks for the information and here is my PSA chart.

I hope you can view it...

https://imgur.com/a/tYhqD

My PSA was at .1 or or so for around six months before the beginning of this chart.

Take care,

Michael

Just looking at that chart I could freehand the curve through those points; the trend is quite clear. I'd suggest you put all of them into the doubling time calculator. In my engineering world we see data like that frequently. You have some variability around an underlying trend. That's a rather straightforward-looking set of data.

Now, more important, what would the result mean? What will you do with the information? That's the key, really. I have no suggestions there, and again our local reference expert Tall Allen may be able to help you find some information about doubling time in your specific instance. It may mean little until it exceeds some threshold level. If you know Excel, you could put that data set into a table, plot it, then do curve fits. With the curve fit you could predict when the trend projects a particular value. The whole effort may just be an anguishing mental exercise though!

But in my humble opinion about your initial question, you should get a very reasonable estimate of the curve underlying your data with the doubling time calculator.

Michael, that's great! From what I've read a doubling time that long is a Good Thing, at least for the situations where it means anything.

Glad it worked out.

Thanks for the kind words. My wife just shakes her head when she catches me doing math just for fun! It takes a special kind of woman to live with an engineer...