Has anyone had a false negative on Axumin PET scan?
My husband was diagnosed with prostate cancer Mar 2019 with Gleason 9 and PSA 10.3. He had laparoscopic removal of his prostate in June 2019. His surgeon told us he was unable to remove [what he thought was] all the cancerous tissue for fear of damaging other things (rectal muscles, etc); the pathology results POST surgery confirmed the additional tissue and two of six lymph nodes tested are cancerous. My husband has had PSA tests in Sept. and Dec. 2019 and March 2020 --- three-month intervals and his counts have been rising: .15 to .29 to .60 at his 3, 6, and 9 mo. follow-ups.
Since the first PSA test, the urologist has told us when the PSA reached .40 he would send my husband for an Axumin PET scan which would show everywhere there was prostate cancer. My husband had the scan after the last PSA was .60 but oncology radiologists reported findings of "no abnormal uptake are identified in the surgical bed or surrounding tissues" and "no avid mass or adenopathy otherwise" and his impression was "no evidence of active malignancy". The urologist was baffled by that report, as were we. The urologist told us he had sent only 4 patients for an Axumin scan and this is the only one [supposedly] not showing cancer. He said he doesn't know how to read the scan himself. My husband prepped for the scan as instructed: no exercise and fasting.
Has anyone had a false negative? Has anyone prepped differently than my husband? Does anyone know what a PSA number has to be before it will show up on an Axumin scan?
At $4000+ for just the Axumin, we want the next scan to be as accurate as possible. Thank you in advance.
Hi
Hi,
. We published an article this afternoon you might be interested in, I am linking it here. I will be posting this Q&A to our Facebook community to try and work up some more feedback for you. I will continue to provide updates as we get them in. Thanks for being here. -Amylyn (ProstateCancer.ner, Team Member) I am very excited about the PSMA test and would love to have my husband in the trials.
I'm not sure how many will read this reply but I did something yesterday my husband didn't think was possible: I was able to speak directly with the radiologist who read the Axumin scan results. Going through a cancer center, we had no idea who would read the scan but I was able to locate him by Medicare claims. Since my husband's Dr was baffled by test results, I saw no reason not to talk to the source. Being very cautious to not step on any toes or to even imply any mistakes, I was able to explain the three reasons indicating the cancer is there and I asked if he had suggestions on anything else we can do to make the next scan (likely next month) more accurate. He was extremely kind and helpful and even volunteered to have another radiologist 'lay eyes' on the first scan as a second opinion deal. So, don't stop just because someone thinks you can't do something. We pay the doctors and, imo, that means we can ask questions, courteously.
Hi DoubleDB. Great to see that you are being so proactive in seeking out information to help with your husband's treatment. I happen to be the author of the two articles amylynv directed you too. First, I can tell you that while the Axumin scan is significantly better than what came before, particularly at low PSA levels, it can have false negatives. This article discusses a comparative study that had 5 false negatives out of 89 patients (see bottom of p.9 and top p.10): http://jnm.snmjournals.org/content/early/2018/03/08/jnumed.117.204032.full.pdf. While your husband's PSA is rising, it is still quite low and false negative is more likely at low levels. Of course, only a doctor can give you a diagnostic interpretation and due to your diligence you will have a couple of radiologists giving you their thoughts. The PSMA certainly seems to be the future of testing for recurrent PCa, but short of getting a rare one in the U.S., the Axumin scan is a certainly superior to the predecessors. Wishing you and your husband the best and please feel free, if you like, to keep us posted on how things are going. Richard (ProstateCancer.net Team)
