I have a question that has me (and some MDs) stumped.
I was diagnosed with PCa [T4N0M0, Gleason 8, 11 out of 12 cores >60% involvement] in January 2009. My PSA in 2006 was 3.4; in 2007 and 2008 it was 1.5. My PSA at Dx was 1.53. Nuclear bone scan in 2/09 did not indicate any distant metastasis in bone. Treatment was 79 Gys IMRT/IGRT plus 3 years of ADT (Firmagon). My PSA went undetectable in 11/09 and has remained so ever since (<0.015 in 2/16). Even though I stopped ADT in 2/12, I have remained castrate (so much for a hormone holiday!) T =13 ng/dl in 2/16.
It has become increasingly painful for me to walk and in late March as part of a workup for my feet, my podiatrist(!) ordered a nuclear bone scan. I suggested that while we were at it, let's scan my entire body. Lo and behold, a single hot spot was found in a rib. My urologist poo-pooed the idea that it was a met, since my PSA was undetectable, suggesting that I must have cracked it in a fall. (I have had broken ribs before and well remember the pain, so I was skeptical to say the least.)
So, we did a CT scan (without contrast) of my chest. The radiologist wrote "Osteoblastic metastatic disease to the right third anterior rib with non-displaced pathologic fracture." Of course he knew nothing about my PSA status and my urologist remains unconvinced that it's actually a met. My oncologist suggests that the radiologist may be right. I've suggested that since my original Dx of fairly aggressive G8/T4 cancer had not raised my PSA it didn't seem completely unreasonable that a recurrence with metastasis could occur without impacting PSA. [And if it is a recurrence, it's probably CRPC since I'm castrate.] On the other hand, I'm asymptomatic for bone pain and can feel pain only when I press the area of the lesion with my fingers.
I did some further research at scholar.google.com and found a couple of journal articles (including one in Cancer [2007]) that indicated metastatic PCa with undetectable PSA has been observed, albeit rarely. None of the docs involved (including the thoracic surgeon who is well experienced with mets and lung cancer) have offered a reasonable theory—to me, anyway—of what the lesion might be if it's not a PCa met. It certainly doesn't seem like an infection since I've experienced no pain, raised temp, or other classic symptoms.)
After a lot of discussion and a PET scan, (which being standard F18 unsurprisingly showed no hypermetabolism anywhere), we agreed that the next step would be to remove the lesion surgically and have it biopsied. Which will happen next week. (We decided against a needle biopsy since it was likely to be inconclusive.)
So, my question: is anyone here aware of a similar situation having occurred in the past? Or, in the words of my urologist, is this simply "another Craig Pynn anomaly."
I will certainly post the biopsy results here, since if nothing else, it seems like an interesting situation. As they say, every man's journey with this disease is unique. But this journey seems just plain weird.
--Craig Pynn
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Craig you have an interesting issue here that really needs more information to be available out there in cancer world on high grade PCA and low PSA. Like you I was diagnosed 2012 with Gleason 9 and a PSA of 4.5. PCA in all 18 cores between 80% and 100% tumour volume. Had radiation treatment in late 2012 along with ADT for approx. 30 months. My PSA after radiation treatment and ADT was almost non-detectable 0.008 throughout 2013 to 2015. So without making this a long story I developed radiation cystitis in the bladder that eventually led me to a new type of MRI in 2014 called a 3 tesla parametric MRI being done that identified clearly there were still active tumour around the remains of my prostate, prostate bed and bladder neck. Please keep in mind that my PSA at that time was still 0.008. The result of all of this for me was salvage surgery of a radical prostatectomy and removal of the bladder and pelvic lymph nodes. The pathology after surgery confirmed the MRI results of active tumour in those areas but was unclear if all had been removed as the specimens sent to the lab were fragmented due to the radiation treatment and necrosis of the bladder. This surgery was done in November 2014 and my PSA remained at 0.008 until July 2015 and has now risen to 0.043 and we are keeping a close watch on it with next PSA due in July this year.
Now there are a couple of reasons I have replied to your post here and the first one is to help you realise you are not alone. The other reasons are that in google-land you will find a few articles dealing with this very problem of high grade PCA and low PSA, it is uncommon but does exist and any PCA specialist should be aware that this can be the case. certainly it is a well known feature of small cell prostate carcinoma. In normal PCA the PSA readings are used to track the advance of the cancer using doubling time etc. I have heard and read so often that scans are of no value with PSA values below 20. In the cases where there is a high grade PCA with low PSA values you cannot use the PSA value as a guide to the cancer advancement. How true is the statement "Every mans cancer path is different" Craig all I can do is offer you this little piece to support your issue and wish you the very best of luck in all your endeavours and hope your specialists are on the ball.
Lee, the statement that "scans are of no value with PSA values below 20" is not correct. The Gallium PSMA PET Scan gives good results even where PSA is less than 1.0
Yes you are correct Paul but the new gallium PSMA PET scans are fairly new and I was referring to back in the old days stuff. Craig's story seems to imply that his scans were of the older type. Hoo-bloody ray for these new PSMA PET scans. I may be heading for one after my next PSA test in July or perhaps the one after if my PSA keeps increasing. My recent (2014) parametric MRI images and diagnostic results for me were incredible. The advances in imaging lately is heartening. Just amazing to think where we may be in a couple of years in better diagnosis and monitoring.
Perhaps Craig might check with his team using your information and or seek second or third opinions based on the newer information.
I had a RRP in 2008 then a recurrence in 2012. Back pain after I thought for sure was mets. Turned out to be arthritis. I asked many many questions since my dad and uncle died from this. My Psa was still at .1. My dr explained if I did have cancer in my spine and my Psa was low, it meant the cancer was started from a different place. Like there could be lung cancer or something else that spread there because if it was mets from the prostate cancer my Psa would have gone up. I know it's not what you want to hear but maybe possible? It's scary stuff to go through. Good luck. Randy.
Ps: there is a new C11 Acetate scan that can detect recurrence from .2 up. The higher your number the better but I'm just throwing this out there for information.
Great to hear from you, Sue. I hope Jeff is doing well, too. I'm basically working full time as a marketing consultant for a client in New Hampshire (I'm still here in Walnut Creek, CA, though) and haven't spent much time in the PCa world until this latest episode in what is obviously a never-ending adventure!
Thanks for your detailed replies, Lee & Randy. I've been here in this group (well, in it's former Yahoo Group manifestation, anyway) since 2009 and there have been occasional posts by me and others about low PSA/ aggressive PCa over the past 7 years. But yours, Lee, is the first in my memory that describes an active tumor with almost undetectable PSA.
Yes, if this lesion on my rib is not PCa, it is is possibly another primary cancer, per my thoracic surgeon. Which is the reason we're not relying on scans, but digging it out to do a biopsy. BTW, I've been working with my urologist since 2001 and my oncologist since 2009. Even though this is a community setting in the suburbs of the San Francisco Bay Area, up to this point I feel I'm in good and competent hands since we have been working basically as a team and they are both experienced, highly knowledgable, and good listeners.
If the biopsy of the lesion in my rib says it's PCa and I am in fact CRPC, then I plan to engage with someone at UCSF since we'll need a different metric (certainly more appropriate imaging than a standard F18 PET scan) than merely tracking undetectable PSA. On the other hand, if it's a benign lesion, then we can all breathe a sigh of relief—obviously my desired outcome.
But speaking as an engineer with a decent knowledge of statistics and probability, a bone lesion with my history of PCa that did not express PSA, I'm laying slightly better than 50% probability that it's a recurrence. Needless to say I'd be glad to proven wrong! I'll have results in around a week and will certainly post the solution to the mystery here.
If you wind up,at UCSF (and it would be hard to do any better in the Bay Area) my suggestion is that you try to get and appointment with Eric Small. He is a great oncologist who happens to be a caring human being, as well,
Hate to confuse issues, but why biopsy? Why not just radiate that one lung/rib spot? If it's the source of whatever, you should be ok, if it's not then you're less worse off (I think) than if you had a surgical biopsy. At least, was the radiation option considered?
Yes, we discussed radiation, but killing it off yields no useful information. If it is indeed PCa then I need to know that in order to develop a strategy of tracking it without the usual PSA metric. If it's not, then I'd sure like to know what the hell it is, and what its etiology may have been. Other than being another primary cancer or an asymptomatic infection of some sort, no one has offered any cogent theories beyond recurrence. Because of the overall mystery involved here, I decided that I preferred surgery over uncertainty. To each our own...
Thanks for sharing. Definitely let us know the results of the biopsy. Sort of scary to here your story as so many of us rely on the PSA numbers for decision-making.
To first answer the concern about the nature of the lesion, I can not agree more with the surgeon. The lesion needs to be diagnosed and could well be an unrelated cancer. I think back to when I had my prostate cancer recurrence I had a scan that showed a small amount of lymph node involvement and a large tumor in my kidney. Since my PSA made it to 88 the working assumption was that the kidney tumor was prostate cancer. The tumor was over 10 cm so they took the entire kidney. The surprise came with the pathology report, the kidney tumor was clear cell renal cancer and not prostate cancer.
This changed the course of treatment which now included both treatment for a prostate cancer recurrence and renal cancer.
Yes, it is important to know what I'd there to insure the correct treatment. I would go for Th surgery and find out for sure what you are dealing with in your body.
I often say that having a prostate cancer recurrence saved my life, because it did.
My friend, hang in there and be healthy. You are a brother.
Thanks, Joel. It's great to hear from you. And thanks especially for relating your "recurrence" experience.
My primary care doc, urologist, oncologist, surgeon, and I have been of the same mind ever since the radiologist wrote "osteoblastic metastasis" on his report. Maybe. Maybe not. Or as my primary care doc put it, "I never tell someone they have cancer based on a scan." I will definitely bring everyone up to speed when I know the biopsy results.
OK, guys, time for an update. Ten days ago I posted here about having to have surgery on my 3rd right anterior rib to find out if the tumor that showed up in a nuclear bone scan and a subsequent CT scan was a PC met, which for me would have meant CRPC. In fact the radiologist reading the CT scan diagnosed it as a "osteoblastic metastasis." Nevertheless, its reappearance certainly seemed odd because my PSA has remained undetectable (although my original PCa did not move my already low PSA at all).
After fairly extensive discussion among oncologist, urologist, and a thoracic surgeon, we decided to go ahead with surgery to remove it and get it to pathology.
Anyway, a two hour surgery last week, followed by a rough 4 days in the hospital, a fairly painful ongoing recovery, all enveloped in a weekend of waiting for a pathology report proves that good things occasionally come to those who wait. (Which is why they call us "patients.")
Just received a call this afternoon from my surgeon with the pathology report: it's a tumor but it's benign. It's an “intraosseous neoplasm” 9mm wide. Official diagnosis is “enchondroma,” which is basically cartilage ending up inside the bone where it's not supposed to be, destroying the surrounding bone, which is why it looked so similar to a met on the CT scan.
As my surgeon pointed out, had I not had a history of prostate cancer, it may have showed up on a scan but not have been a big cause for concern; they would have just followed it periodically.
At least we can all rest easy that rising PSA remains the best indicator or recurrence and my case is not an exception to that rule. Needless to say I'm very happy.
I just had a bone scan and was told I might have a lesion on 1 rib . Oncologist want to another scan in 1 month I think he said. Is the surgery kind of major? Or a simple in and out procedure at the hospital? Where are you getting yours done? My PSA is less than .02. Thanks.
Hi WIlfred: The ONLY reason I had the surgery was that it was the only way to determine the nature of the lesion. Or, as I told my surgeon, "I'll take surgery over uncertainty." The uncertainty was whether or not it was a met indicating recurrence in the face of undetectable PSA.
Thoracic surgery is a reasonably big deal and I would run from any surgeon who suggested doing it on an outpatient basis. Among other things, it involves collapsing a lung during surgery, which has its own set of consequences. I wound up being in the hospital for 3 nights—a day longer than planned due to a congenital condition called neurocardiogenic syncope. I'm now 8 days out from the surgery and healing well, but it's not been fun by any means. It also took almost a week to get the biopsy results since they have to dissolve the calcium in the rib in order to get at the tissue, which is a lengthy process. Nevertheless, I have zero regrets re the path I've taken. But it's a highly individual decision.
I'm headed in a few minutes for removal of some stitches and I'm going to ask what the surgeon, as well as my other docs, what they think is the etiology of this weirdness called 'enchondroma.'
I'd go with your oncologists's advice and scan again in a month. The big question is, is your PSA rising? If so, that suggests that the lesion is a met, which can be zapped via radiation rather than surgery. On the other hand, if there's uncertainty that, like me, you wish to have resolved, then a resection and biopsy might be suggested. But in any event I'd wait for that next scan (or two). Like you, I'm G8, and was T4N0M0 at Dx, so I'm hyper-alert about PSA and possible recurrence.
BTW, I'm being treated in a community setting in Walnut Creek, CA, about 30 miles east of UCSF, but I've been with these docs for many years and trust them with my life.
I have pc with bone mets. I have never had a PSA over 3.5 or 4. My oncologist and urologist said it is rare but happens. My Gleason score was 9 /10. (I still don't understand the Gleason score. )
There are many varieties of prostate cancer. You and I have the version that does not express much, if any, PSA, so we have low PSA (mine was 1.5 when I was diagnosed). This low-PSA prostate cancer also tends to be aggressive, which is what yours (Gleason 9) and mine (Gleason 8) is.
The Gleason Score is derived by the pathologist evaluating the biopsy cells under the microscope and grading them on a scale of 1 (barely discernable cancer) to 5 ("hi grade" cancer). The pathologist then looks for other cancer elsewhere in the biopsy and scores those in the same way (1 to 5). The two scores are added together to give the final Gleason score. In my case the "primary" cells were 4 and the "secondary" cells were also 4, giving a score of 8. In your case, the primary cells were 5, the secondary 4, giving a score of 9. Both these Gleason scores are considered "high risk" cancer that's likely to spread, as yours already has.
The other important biopsy metric is the percent of cancer in each of the biopsy cores (say, 12 cores) and how many cores had cancer in them. This measures the extent of the cancer. In my own case 11 out of 12 cells had cancer in them, most of them 80 to 90% cancerous.
I am 65 and was diagnosed in Aug 2013 with 4.1 which only raised suspicion because it had doubled in a year. 9 on Gleason had already met in pubic bone. We decided to only treat pain using radiation. So far we have treated hip (lesion had fractured it) 4 separate ribs, sacrum, T2 vertebrae, cerebellum, and I have a lesion on my adrenal gland which we have not treated. All the ribs we have had to treat twice so I am glowing green! To your point: I am castrated and PSA is hardly measurable. Another point I would make is that I got away from a urologist and am being treated by a radiologist oncologist. (I mean I do have cancer and urologist seem to want to hold on to me and all of them pushed Provenge . . .I wonder why)
I have heard before of patients with a large tumor burden yet low PSA, but not as low as yours when they previously had a high PSA. Some very aggressive advanced PCa cells may produce disproportionately low amounts of PSA.
But please let us know how it goes for you next week.
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From PSA 1000+, and screaming with pain while urinating to Undetectable!
