An (unfortunately) interesting oncologist visit today... a bit lost here...

Mixed news at today's every-3-month follow up with my MO. Now I'm looking for advice from the wise members of this forum!

Good news, testosterone at 290 is now in the "normal" range! I feel very much better, but for some reason hot flashes persist. We'll wait and see on that, I guess. Fatigue has really resolved. Still, to be at 290 only 5 months after finishing 3 YEARS of ADT2 is pretty gratifying. I really didn't ever expect to see such a number again, let alone so soon.

The less good news, my PSA is also up, at 0.2. It's been <0.1, undetectable, ever since Aug 2013 when my radiation finished. HT finished in March this year, so about 5 months ago. It was undetectable back in May, too.

Well, beans. My new MO, Dr. Ajjai Alva, wants to be aggressive (which I like). We'll recheck the PSA in a week just to rule out any anomalous test. If it's still at 0.2, then he proposes immediate follow up:
1) CT scan (looking for enlarged lymph nodes)
2) Bone scan (usual T99 type)
3) If anything visible on 1 or 2, then we act on that
4) If nothing visible on 1 or 2, then he's suggesting a C11 PET scan with Dr. Kwon at Mayo (!)

Now, I'm aggressive and have deep respect for the rotten Type 5 cells in my biopsy. They're known bad actors, easily metastatic and all that. And my case was all type 5 and 4 cells, so my PSA is likely falsely low (those cells don't make much PSA).

However... my prior MO (Dr. Hussain) and I had discussed the possibility of a PSA increase coming off of hormone therapy. She indicated the usual practice of no action unless the PSA went above 2. Dr. Alva says that is an outdated criterion, and the present trend is to aggressively go after any kind of increase.

So, having had only radiation, I still have a (well-cooked) prostate. Wouldn't it be reasonable to expect it to make some PSA once the HT clamps have been removed? Is it really a concern already at 0.2? I was kind of expecting that to increase to some level, but then stay there and we'd be ok. He definitely didn't see it that way.

Are there recent studies that indicate such a small rise, post-RT as primary therapy, is concerning?

And, for those who've done the C11 scan, is it reasonable to expect this expensive (not covered by insurance) test to find anything with such a low PSA? Do I really need to book with Dr. Kwon for this?

Suddenly this has gone a direction I hadn't considered, and I'm a bit lost right now.

Signed,
Confused in Michigan

Another verse for a song about the impossible.

Oh tell him to measure his PSA's rise,
Parsley, Sage, Rosemary, and Thyme;
With ne'er a worry in his merry eyes,
Then he'll be a true love of mine.

Redwing:

In answer to your question about the C-11 scan at the Mayo Clinic. It is my understanding that the C-11 Choline scan by Dr. Kwon requires that your PSA be at 2.0 or above to be considered. I flew to Phoenix to have the C-11 Acetate scan by Dr. Fabio Almeida at the Phoenix Molecular Imaging. The difference between the two scans is that Dr. Almeida uses a PSA of 0.5 or higher. The C-11 acetate detects PCa cells at a more molecular level. My scan detected a single hot spot right next to my urethea. My MO at UPENN followed up with a biopsy of the hotspot to verify what Dr. Almeida found, which was confirmed.

Thanks, JerseyGuy. If Dr. Kwon's C-11 choline test requires 2.0 or greater, I wonder why my doc would have even suggested it? This just gets more aggravating the more I think about it. Could he have misunderstood a 0.2 to be a 2.0? If that's the case, I'm dropping that guy like a hot potato. But again, I challenged him on acting at 0.2 and that's when he said that >2.0 was an outdated criterion. Dr. Hussain didn't think so in May.

It's just not adding up for me.

We had a plan, and now I'm thinking this new doc is the anomaly. I like the plan set up with my prior doc, since it made a lot of sense to me. Check PSA quarterly, if >2.0, then act, else don't sweat it.

In hind sight, I wasn't prepared to hash it out with him about further scans, limits, indications, or whatever, since it didn't seem at all likely that such things would even be in the cards yet.

Redwing

Here is the the post from Traveller58. It's food for thought:

I have been on Casodex monotherapy with 50 mg daily since December 2014, when my PSA hit 0.8
My PSA dropped to zero in 1-2 months and stayed there until December 2015 when my doctor asked me to stop taking Casodex, he wanted to see how the PSA and Testosterone will behave. My current PSA is 0.21 and he put me back on Casodex 50 mg but this time reduced the dosage to weekly. I feel fine and am grateful for the good quality of life.
Of course each patient is different and this therapy may not work for everyoneAge 62 (56 when dx), surgery Jan 11, path report: t3b, GS 8 with tertiary 5, SVI, neg.margins.
PSA 3 months post op 0.03. Started Adj ADT May 11 and IMRT Jan 12. Last Lupron shot June 12.
PSA 0.003 May 11 - April 13, T 486 Apr 13
PSA 0.8 Nov 14
Casodex monotherapy since Dec 2014 with 50 mg daily, reduced dosage to 50 mg weekly since April 16. PSA 0.2
Urinary control, sexual function

Post Edited (Traveller58) : 5/14/2016 3:25:35 AM (GMT-6)

Redwing:

I last saw Dr. Kwon at mayo in Nov., 2014 and I am scheduled to see him again next month.
He really prefers at LEAST 1.5, preferably over 2.0. I remember him saying that 2.5 was probably the optimum PSA to get a very accurate C11 read.

Go with your gut -- find a new MO.

Mel

Hi Redwing. I'm with TA and MT on this one as well. If I get my first post Tx PSA anyways even remotely close to .2, I think my RO will have me dancing.

Redwing....I'd also agree that you're in need of a better team. It may well be you're in the 'bounce' stage, and it doesn't mean a lot. Go for it, get the data, figure it out. The answers are out there

Redwing-

The 68Ga PSMA scan I had at UCSF does not have a minimum PSA for biochemical recurrence, only a doubling time under 12 months.

Not sure yet if insurance is covering this?


Inclusion Criteria:

Known prostate cancer with a clinical concern for the presence of metastatic disease as delineated below:
Treatment naïve patients with one of the following risk factors: CAPRA (Cancer of the Prostate Risk Assessment) score ≥ 5, PSA ≥ 15 ng/mL and/or Gleason score ≥ 4+4.

Patients with biochemical recurrence after prostatectomy or radiation therapy with a PSA doubling time less than 12 months.

i. These patients may have received androgen deprivation therapy prior to imaging.

Patients with castrate resistant prostate cancer with progressive disease as defined by PCWG2 criteria (27).

i. Patients with castrate resistant prostate cancer can be either on treatment or off treatment
Age > 18.
Karnofsky performance status of > 50 (or ECOG/WHO equivalent).
Ability to understand a written informed consent document, and the willingness to sign it.

Exclusion Criteria:

Patients exceeding the weight limitations of the scanner or are not able to enter the bore of the PET scanner due to BMI.
Inability to lie still for the entire imaging time (e.g. cough, severe arthritis, etc.).
Inability to complete the needed investigational due to other reasons (severe claustrophobia, radiation phobia, etc.).
[url]

ISU-CycloneFan said...
Other friends of mine who share in my same diagnosis have also consulted with Dr. Kwon and have also had the CHOLINE-PET scan, based on their particular case histories. In my case, even with a P.S.A. that is registering at less than 0.10, the choline scan has still been used in my case --- to track ANY possible changes and to provide comparative scans.

Compiler said...
I last saw Dr. Kwon at mayo in Nov., 2014 and I am scheduled to see him again next month.
He really prefers at LEAST 1.5, preferably over 2.0. I remember him saying that 2.5 was probably the optimum PSA to get a very accurate C11 read.

Thanks for all the inputs, guys. I'm quite puzzled as to how to reconcile these two positions. If the scan's only good above 1.5, why would it be used to track at 0.1? Something's amiss. The thing that set my new doc off so much seemed to be my "very high risk" status along with my "young age" (at least for PCa, I'll take it). Maybe our G9 stuff is trackable at a lower measured PSA?

Maybe I need to call Dr. Kwon's office to find out what they think. Dr. Alva claimed to know Dr. Kwon, so there may be some background information exchange.

Redwing, when I had my C-11 Acetate by Dr Fabio Almeida at AZ Molecular Imaging, my PSA was only 0.27. Since the F18 sodium test had shown suspicion for LN involvement we did it anyway (not covered by insurance) and it detected 3 micro LN all contained within pelvic region.

In my case the out of pocket was well wrth it since it changed my diagnosis from stage 4 distant bone mets to locally advanced and treatable. I chose Provenge and SBRT that so far has done the job.

With respect to how high PSA needs to get before taking action, like you my PSA is not a very good indicator, so Dr Jeffrey Turner (an associate of Dr Mark Scholz and Dr. Richard Lam) and I agreed to re-scan when PSA exceeds 1.0.

Dr. Kwon does make exceptions and his C-11 Choline is generally covered by insurance. Check with Gunner34 who has had his fair share of C-11's by Dr. Kwon who will probably devote a chapter of his next book to Gunner's case.

I don't think Gunner will be at Rochester GFMPH this time, (looking forward to seeing you and Connie BTW), so you should check with him by email.

Congrats on the T @ 290 which is about 278 more than mine. That 10 years of age difference seems to be a very large factor since I was on Lupron 10 months less than you, but I was also on Zytiga for 9 months. I have been off both since April 2015 but T is still 12, 34 and 47 last 3 tests but PSA each time <0.01.

compiler said...
Redwing:

The best way to anser your question: CALL THEM

I emailed you the phone # for Dr. Kwon's Department

Mel

Thanks, Mel. I did call them just now. They said indeed, unless my PSA is 1.5 or higher they wouldn't do anything for me. Also, the person said there is a waiting list for Dr. Kwon, unknown length. Varies, anywhere from weeks to months to get in to see him.

So, my MO is out to lunch on the whole C11 choline scan business.

Sigh.

Redwing:

I did not know that PSMA was being done at Umich.

I just scheduled the C11 scan at Mayo. I wonder if I should look into it (my PSA is now probably between 1.5 and 2.0).
Who is your new guru?

I am seeing Dr. David Smith at Umich. I like him better than Hussain.

Mel