Active Surveillance -- Back to MSKCC six months after diagnosis

Hope4Happiness said...
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.

I am sure that there are good arguments for another Bx now. OTOH, your doctors, who are far more experienced in managing this disease than most any of us here, don't think there is. FWIW, I agree with them. But of course, I am not a physician specializing in PC cancer. You- as so often happens with us- are now faced with opposite opinions from different groups of PC specialists. And as usual, you must make the final decision, although I suppose that would entail finding some physicians who agreed with you if you decide your guys are wrong.

But I think I understand where they are coming from. Every treatment, or most tests, they can offer you has some corresponding level of risk, even if very a very small risk. And of course expense. That certainly includes prostate Bx, which is by no means risk free.

That must be balanced against what is known about the disease that you have and it's risk. And a far as you know, you have a very small amount of a very low risk cancer that, even if you never do another thing, is quite unlikely to kill you. Actually, probably a large percentage- maybe even a majority- of older males walking around diagnosed have the same thing as you do, only they don't know it, lucky bastids.

Your PSA has not risen even a smidgen, has in fact even gone down a smidgen, your DRE remains normal, and your risk is very low to start with. It is true that there is a small chance that your 1st Bx missed something, but there is certainly no reason to assume that it did. If you have another Bx now, you will take on some additional risk. And guess what: it can once again miss something. It might even miss what it found in the first place, leaving you to wonder if it went away on it's own or the needles just missed it. So even then you will still have no guarantees that there is not something more sinister lurking in there. But if you are unlucky, you will join the I suppose very small % that gets a nasty unwanted SE from the Bx.

And based on the #s and %s, really what is the risk for someone with your #s if their followup Bx is delayed for a year, or at least you wait for some other sign of advance?

So I'm thinking- if it was me- and these doctors feel that another Bx is not yet warranted- good for me! Of course, as always, I might be totally in error to feel that way. It is only my feeling, not guaranteed fact! Good luck to you as you figure it out!

JJO said...
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!

@JJO -- As I'm basically taking AS in six-month time intervals, I'm bit more concerned with "what is not known" than "what is known," as it were.

I'm basically seeking more data -- Sure, it's a bit of a crap shoot, and a follow-up biopsy could miss *something* but as you state: "If the biopsy was negative, it was at least an indication that there was still very little cancer in me" -- Yes, a negative biopsy is at least a step in the direction of *indicating* that my current cancer has not progressed or is not aggressive... or, the biopsy could show that I have a bit more G6... or the biopsy could find some hidden G7 or such...

Ultimately, it can only provide more info and data points thus helping me decide on a continued or altered course of action.

I am a little bit further along on AS and I would love for someone to be able to tell me that another biopsy is not necessary at this time.

As it stands now, I am scheduled to have my third biopsy this spring. That will make it about 18 months between biopsies. It was supposed to be 2 years between biopsies, but my last MRI showed lesions that look suspicious. They were on the opposite side of the positive cores. However, there is some indication that these lesions were there on the previous MRI, just not as visible due to different settings used on the machine this time- annoying.

My point is, I am all for new and incredible ways to determine if the disease is growing without having biopsies, but a confirmation biopsy to me would be fairly important. Especially if your first one was done by someone else. My first two results were almost identical (second being fusion, first one was in-office with a different practice).

My brother OTOH had a confirmation biopsy that was negative. So now he is doing nothing. Not sure if he even considers himself on AS.

dbell said...

NKinney said...
I applaud the PC-experts at MSKCC for working towards safely reducing the number of unnecessary biopsies. Biopsies are not necessarily without consequence.

I am bit confused about my own situation. I had a BX/DX in 11/17 currently on AS with MSKCC. MSKCC read the BX and agreed with the G6 3+3 findings (see below). I just had my second MRI guided BX on 2/26. AS admin. (surgeon) said, the MRI did not show anything new (which is the good news) and the cancer is contained in the prostate. I had already scheduled the BX with the MRI (so we can not say we had the BX based on MRI findings). MSKCC really only likes to rely on their own lab work etc. So, I have had two BX in four months! I asked the DR. and was told that is how we do things on AS at MSKCC. Again, who am to question their protocol? Awaiting BX results.

@dbell -- For clarity, your 11/17 was done at MSKCC? or was it performed at another facility and MSKCC performed the biopsy on 2/26 only?

For the record -- my first three negative biopsies (2009, 2010, 2011) were performed at a different facility. My fourth negative biopsy (2012) was performed at MSKCC. My first positive biopsy (2017) was performed at MSKCC.

Hope4Happiness said...

dbell said...

NKinney said...
I applaud the PC-experts at MSKCC for working towards safely reducing the number of unnecessary biopsies. Biopsies are not necessarily without consequence.

I am bit confused about my own situation. I had a BX/DX in 11/17 currently on AS with MSKCC. MSKCC read the BX and agreed with the G6 3+3 findings (see below). I just had my second MRI guided BX on 2/26. AS admin. (surgeon) said, the MRI did not show anything new (which is the good news) and the cancer is contained in the prostate. I had already scheduled the BX with the MRI (so we can not say we had the BX based on MRI findings). MSKCC really only likes to rely on their own lab work etc. So, I have had two BX in four months! I asked the DR. and was told that is how we do things on AS at MSKCC. Again, who am to question their protocol? Awaiting BX results.

@dbell -- For clarity, your 11/17 was done at MSKCC? or was it performed at another facility and MSKCC performed the biopsy on 2/26 only?

For the record -- my first three negative biopsies (2009, 2010, 2011) were performed at a different facility. My fourth negative biopsy (2012) was performed at MSKCC. My first positive biopsy (2017) was performed at MSKCC.

My first BX was not performed at MSKCC, but at my local URO's office, 2/26 was at MSKCC with my AS Admin.

Hope4Happiness said...
.....please always remember how important your posts and your blog are to all of us here. The information you collect, provide, and assess is crucial to understanding the many facets of this complex disease. We're all lucky to have you here.

Amen to that!

TA, with facts, studies, and summaries at his fingertips, explains situations and issues better than any physician I've been to, and I've been to a lot of them.

You provide us all with an indispensable service.

garyi said...

Hope4Happiness said...
.....please always remember how important your posts and your blog are to all of us here. The information you collect, provide, and assess is crucial to understanding the many facets of this complex disease. We're all lucky to have you here.

Amen to that!

TA, with facts, studies, and summaries at his fingertips, explains situations and issues better than any physician I've been to, and I've been to a lot of them.

You provide us all with an indispensable service.

Very true....I always look for TA's opinion on numerous subjects...always educational, informative, and helpful! Keep up the good work...Thanks again - Dave