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Active Surveillance -- Back to MSKCC six months after diagnosis

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Posted 2/22/2018 9:21 PM (GMT 0)
Well gents, I head back to MSKCC in NYC this week after being diagnosed with G6 prostate cancer in August 2017. At that time, my urologist, a surgeon, and a radiation oncologist suggested active surveillance (AS) -- See details in my sig below.

I was hoping to have a Prolaris test shortly after diagnosis, but the doc said there wasn't enough cancer detected to get an accurate reading. The plan was just to follow up with a PSA test six months later, read that, then move onto a confirmatory biopsy (or another MRI and then the confirmatory biopsy) shortly after.

I appreciate all the great information I find at the site and all the great advice I've gotten. I'm admire a lot of the courage I read on many posts.

I don't post as much as I thought I would because sometimes my head sends me down the "what-if" rabbit hole, and I've got to step back, and as my wife says, "enjoy life right as it is happening."

Well, I'll be back with updates.

Thanks very much for all your support.
Posted 2/22/2018 9:27 PM (GMT 0)
Good luck. I always like to read about AS patients, since I am currently in the same situation.
Posted 2/22/2018 10:51 PM (GMT 0)
I admire your attitude - I believe that the "what if" game is one of the most self destructive things we can do to both our psychological and physical health. I think way too many patients base treatment decisions on what-ifs instead of what-is. It's hard (yet understandable) for many to let go of the illusion they have control over what is not in their control.
Posted 2/22/2018 11:03 PM (GMT 0)

Hope4Happiness said...
I don't post as much as I thought I would because sometimes my head sends me down the "what-if" rabbit hole, and I've got to step back, and as my wife says, "enjoy life right as it is happening."


"There are people who are always anticipating trouble, and in this way they manage to enjoy many sorrows that never really happen to them." -- Josh Billings.
Posted 2/23/2018 12:08 AM (GMT 0)
Or they don't completely freak out when trouble arrives, having expected it all along.
Posted 2/23/2018 12:23 AM (GMT 0)
Also on AS with MSKCC (see my sig for details).  Also, could not perform a Prolaris test due to lack of cells.  Had an MRI on 02/19 and have a ultrasound Biopsy scheduled for 02/26.  MSKCC has been great (friendly, professional, knowledgeable etc.)

Very happy with my decision to deal with them! yeah


Posted 2/23/2018 12:29 AM (GMT 0)

sheepguy said...
Or they don't completely freak out when trouble arrives, having expected it all along.


I don't think it works that way. Instead, they take a sort of schadenfreude at their own misfortune as seemingly having justified their anticipatory worry, then immediately embark on anticipating what further troubles may await them. Accepting what life gives us, the good with the bad, is better protection against freaking.
Posted 2/23/2018 1:48 AM (GMT 0)
I just wanted to comment that I like to read posts of those on AS.
It is great to have the decision and choice with support to go on AS.
I worked at trying to go on AS but after consulting with various doctors
and tests decided soe treatment was probably best.

Good luck in the future.
Posted 2/23/2018 5:38 AM (GMT 0)
people are wired differently. I really dislike it when someone tells me how I should feel.
Posted 2/23/2018 6:09 AM (GMT 0)

Saipan Paradise said...

"There are people who are always anticipating trouble, and in this way they manage to enjoy many sorrows that never really happen to them." -- Josh Billings.

Perceptive quote, SP, that sadly applies to far too many IMO.
Posted 2/23/2018 8:21 AM (GMT 0)

sheepguy said...
Or they don't completely freak out when trouble arrives, having expected it all along.

One common myth is that we can be emotionally prepared for what happens. "Being prepared" is a lie we tell ourselves. I thought I was prepared for my father's death, which took 3 1/2 years from his cancer diagnosis. It turns out, I wasn't prepared at all -- it hit me like a ton of bricks when it finally happened. And that's as it should be. Grief is an appropriate reaction to loss because humans are wired that way. People who "prepare for the worst" are rehearsing grief, clinging to it, thereby causing themselves even more suffering.
Posted 2/23/2018 1:23 PM (GMT 0)

Tall Allen
One common myth is that we can be emotionally prepared for what happens. said...
eing prepared" is a lie we tell ourselves. I thought I was prepared for my father's death, which took 3 1/2 years from his cancer diagnosis. It turns out, I wasn't prepared at all -- it hit me like a ton of bricks when it finally happened. And that's as it should be. Grief is an appropriate reaction to loss because humans are wired that way. People who "prepare for the worst" are rehearsing grief, clinging to it, thereby causing themselves even more suffering.

I agree totally. In fact, even though my daughter is a licensed clinical counselor, I still have to remind her that "There's nothing wrong until there's something wrong."
Posted 2/23/2018 1:47 PM (GMT 0)
And echoing Saipan Paradise, focussing on the potential negatives leads to missing the actual positives.
Good thread — wonder about adding something about this to the “newly diagnosed” section.
Posted 2/23/2018 2:54 PM (GMT 0)

Tall Allen said...

sheepguy said...
Or they don't completely freak out when trouble arrives, having expected it all along.

.....I thought I was prepared for my father's death, which took 3 1/2 years from his cancer diagnosis. It turns out, I wasn't prepared at all -- it hit me like a ton of bricks when it finally happened....



Me too, me too....father, mother and brother. cry

God bless them all......
Posted 2/23/2018 3:07 PM (GMT 0)

sheepguy said...
Or they don't completely freak out when trouble arrives, having expected it all along.

I don't think this is true. I dont think you can mentally prepare yourself for things to go seriously wrong with something like your health (or a loved one's health) to the point where you take it in stride when it happens.

Hope4Happiness said...
I don't post as much as I thought I would because sometimes my head sends me down the "what-if" rabbit hole, and I've got to step back, and as my wife says, "enjoy life right as it is happening."

You are smart. So is your wife. Thats probably the best description of what mindfulness is all about, that i have ever seen.

Good luk with your next steps. May you stay on AS forever.

Post Edited (Pratoman) : 2/23/2018 8:10:57 AM (GMT-7)

Posted 2/23/2018 3:32 PM (GMT 0)
OK I guess I'm only speaking for myself. I'm not saying things don't affect me , but I don't ignore the possibility of "crap happening". On the opposite end there are those that are so freaked out that they can barely function because they can't believe they got cancer or a loved one died. That is not useful either.
Posted 2/23/2018 10:10 PM (GMT 0)
I appreciate everyone's comments here -- thanks so much!

I just got back from MSKCC, and a strange situation has arisen, and I'm in need of some advice.

My PSA came back slightly lower than it's been (6.06, down .13 points from June 2017), and my latest DRE was normal as usual.

I inquired about scheduling my confirmatory biopsy, but the intern who saw me (I never even met with my new doctor -- Dr. Ehdaie -- during the appointment) felt I do not need another biopsy just yet. She and the doctor feels that because my MRI from June showed no distinct lesions and I only currently have a very small amount of cancer, I would only warrant:

-- another PSA in six months (July 2018)
-- another MRI six months from that (January 2019), and if there if nothing suspicious on that,
-- a biopsy in August 2020.

I was floored by all this. I explicitly stated that I have not seen an AS protocol this "loose" -- the AS protocol at Hopkins, MD Anderson, etc. all call for a confirmatory biopsy at max a year after diagnosis.

I ended up speaking to the Dr. Ehdaie's assistant later in the day, and he essentially stuck by the "no biopsy now" plan given my current readings.

I'm in a bit of a quandary at the moment because if this was some "roadside medical stand," I would surely be seeking another doctor/facility, but this is the very respected MSKCC! I know I currently fall into the "very low risk" category, but...

I'm wondering if I should consider an AS program at another facility... Is this warranted or should I just slow my roll and put more trust in these professionals?

Thanks for any perspectives offered.
Posted 2/23/2018 11:22 PM (GMT 0)
I agree with you that a confirmatory biopsy within a year of the first biopsy should be a requirement for active surveillance programs. Random biopsies will miss higher grade PC about a third of the time. And a negative mpMRI is a "false negative," about 10-20% of the time. See, for example, this recent study:

pubs.rsna.org/doi/10.1148/radiol.2017152877

I also understand why your doctor disagrees. He authored a study last year that showed that at MSK, only 11% of AS patients were found to have higher grade cancer on confirmatory biopsy, and their mpMRI "false negative" rate was only 7%, both far surpassing what is normally achieved in usual clinical practice. Based on their extraordinarily good outcomes, they developed a model using PSA density, MRI results, and initial biopsy results to predict whether a confirmatory biopsy is needed:

/www.ncbi.nlm.nih.gov/pmc/articles/PMC4840176/

I would point out two small problems with their model: it is based on retrospective data and it has not yet been validated at any other institution. In other words, all the patients had already had confirmatory biopsies, and MSK did not look at what happens when patients do not have confirmatory biopsies (they only looked at what would have happened). I don't doubt that their clinicians are among the best in the world, which is why their results are superior and probably not generalizable - only external validation could show that.

So that leaves the ball in your court -- if you believe their model is truly predictive for you specifically, you can forgo the confirmatory biopsy. If you have misgivings, you may want to look elsewhere. Sticking with AS is all about maintaining reasonable confidence in the protocol.
Posted 2/24/2018 3:52 PM (GMT 0)
At the opposite end of the spectrum, my doc for AS wants an annual biopsy. I went to another doc for a second opinion, and he thinks I'm being over tested; a biopsy every two to three years is the way to go. I told my doc about what the other guy said and he said there is no accepted standard at this point. He acknowledged that he's more of a worrier, so he likes to test people more often.

The point of this story is that there is no accepted protocol at this point. You just need to find a doctor you trust and go with what they do.
Posted 2/24/2018 7:52 PM (GMT 0)
JJO, AFTER you have an MRI targeted confirmatory biopsy that concludes that you are correctly suited for AS, then you should not require annual biopsies, in my opinion.

Biopsies or an MRI every two or three years is what I would consider reasonable, unless there are psa, PHI, DRE, or other tests indicating an immediate need.

Biopsies are not risk or pain free. Two of mine caused damage and pain that lasted for six months, and tripled my psa. Three out of 100 prostate biopsies result in hospitiization for sepsis, and one of 1400 is fatal.

I see no rationale for routine annual biopsies for AS patients.
Posted 2/24/2018 8:35 PM (GMT 0)
AS: I appreciate your viewpoint. I have never had a targeted fusion biopsy because my MRIs never show any trouble spots (which is a good think in the big picture!). As for how often to have biopsies, it's very difficult to reject the opinion of a doctor I've had for over a dozen years, and who had provided great care on a number of fronts. He's also at a major academic medical center with excellent training. So I'm struggling with what to do about his advice. There is also something to be said for erring on the side of vigilance when it comes to checking for a change in one's cancer. Fortunately, I've never had a bad reaction to a biopsy like you describe. While I sure don't look forward to them, the recovery has never been a problem.

He'll want to do one in December, so I've got some time to ponder this issue. I have considered getting another opinion on this, perhaps from your facility, Johns Hopkins, or another similar academic center of high repute.
Posted 2/25/2018 1:18 PM (GMT 0)
Checking in quickly via mobile device during the weekend, but I just wanted thank folks again for the responses, and especially Tall Allen for some crucial info.

Will check back in during the week, but my gut is telling me to push MSKCC for that confirmatory biopsy.
Posted 2/25/2018 2:19 PM (GMT 0)
All of this discussion shows the complexity of this disease. There are so many options, which is good is one respect, but it also complicates the decision process when it comes to what action to take. It ultimately comes down to what you feel is best for you. I personally could never do active survelence. Just not wired to do that sort of thing, but I certainly admire those who can. All one can do is to educate yourself and make the best decision that works for you and hope for the best. Fortunately, there are many success stories out there regardless of the treatment option you choose. May we all continue to be survivors.

Tom
Posted 2/27/2018 2:45 PM (GMT 0)
Update:

After thinking about MSKCC's protocol over the weekend, I decided that I was not comfortable with the elimination of the confirmatory biopsy. I contacted the doctor directly after taking the weekend to think rationally and ensure that I approach him with reason and facts (and leave all emotion out of the phone call).

I presented the doctor with the protocols from other hospitals, and with some great help from Tall Allen, I referenced and questioned an article he had a hand in composing about the elimination of confirmatory biopsies for specific patients. After a rational discussion we agreed to a confirmatory biopsy within three months from now as that is the protocol I am most comfortable with...

For those interested in MSKCC's procedures -- They are now classifying all AS patients in two groups: "Low-risk" and "very low risk." As I fall into the latter category, the doctor wanted to follow the newer protocol for this group.

In addition, he mentioned that although he will indeed perform the confirmatory biopsy, it won't be a true mpMRI-targeted biopsy because my MRI from June showed no distinct lesions and my current two G6 cancer cores are 1% and 3%, respectively.
Posted 2/27/2018 3:22 PM (GMT 0)
Hope4: You should know it's possible that your "confirmatory" biopsy will come up negative. After my initial diagnosis (through a saturation biopsy) my next biopsy was negative. Like you, my MRIs show nothing so they can't do a fusion biopsy. A subsequent biopsy was positive.

After the first "confirmation" biopsy I was wondering if I wanted a positive or negative result. I already knew I had cancer. If the biopsy was negative, it was at least an indication that there was still very little cancer in me. On the other hand, if it was positive, the G6 diagnosis could be confirmed. I'm still not sure which result I want in my follow-up biopsies!
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