Hi MHK and welcome to the Forum where you don't want to be.I, too am a fellow (5+4) guy and am very sorry that you're faced with this far-from-uplifting report. You will want to meet with your uro to discuss it
. Here are some layman's thoughts. Please take them as suggestions for discussion with your docs and topics that you may want to read up on. We are not doctors!
On the plus side, your path staging was pT2, so the cancer was basically prostate-confined. However, there are adverse findings that may mean further treatment will be advised to complete your primary treatment
1. Neuroendocrine adenocarcinoma and ductal PCa are each more serious than the much more common acinar adenocarcinoma. I also see "intraductal spread," another finding of concern, at least statistically speaking regarding the chances of recurrence. This adverse tissue architecture in the tumor was not overwhelmingly present, which is why I suggest the 2nd path opinion to confirm it (see below).
2. The positive margin of just 2 mm may usually be considered unimportant, but, present in G9 disease, merits consideration.
3. The lymph nodes were all negative; however, only 5 were sampled. IMO, this is a small sampling, given that you had a G7 (4+3) biopsy, plus the fact that a good percentage of men are upgraded at RP, like you were.
4. The tumor, which seems to have been a single lesion, was quite large.
of G9-10 men do not have perfect outcomes after an RP, and adjuvant therapy after a healing period is strongly advised when there is even one adverse finding
. This usually, but not always, takes the form of external-beam radiation (+/- ADT).
In addition to discussing the implications of the above with your docs, I would also discuss and look into:
1. A second pathology opinion
. Having RP tissue sent to Dr. J. Epstein at Johns Hopkins for a 2nd pathology opinion
. He is the top guy when it comes to prostate pathology, and men frequently have biopsy and RP tissue sent to him. You uro or surgeon can arrange to have your slides and a tissue block sent directly to him
, because this is a common practice. The review is not expensive and is usually covered by insurance. Here is his website
with instructions. Dr. Epstein will review all aspects of your findings, including the Gleason score, tumor type(s), and extent of the cancer.
2. The possible benefit of an advanced scan
. There are several new advanced scans (Ga 68 PSMA-11, 18F-DCFPyL PSMA, or Axumin) that can locate metastases in both soft tissue and bone. These scans are much more sensitive than bone scans. That you had only 5 lymph nodes sampled is another reason for this suggestion.
3. The possible benefit of a Decipher test
on your RP tissue. The Decipher test give your risk (low, intermediate, high) of developing metastases within 5 years. (Not all G9-10 men are high risk for mets -- I tested low risk even though I was a (5+4). The test results may even figure into your adjuvant-treatment recommendations. If you go ahead with this test, I would request the optional GRID report along with your Decipher results. The GRID report is experimental and labeled "not for treatment decisions," however it contains much information about
your tumor's RNA, which may be of help to your docs.
4. Ultrasensitive PSA testing
(uPSA) going forward. Even though your 5-week PSA test was good, it was done with the less-sensitive test designed for men with prostates. This is typically the test used for the first PSA, but it would be best to have your next tests done with an ultrasensitive PSA test that can detect PSA levels below 0.1. If your PSA in another month or two is close to 0.1 (even if below it), that alone would likely be reason to advise adjuvant therapy, even for men with otherwise perfect pathology reports. Ideally, when your PSA reaches it's nadir -- probably sometime within a few months -- you want to see a "<" sign in front of a much lower value, such as <0.02 or <0.014, depending on which uPSA test you have. It's possible that your upcoming PSA readings will figure into your adjuvant treatment plan.
5. If I had your path report, I would not hesitate to have a consultation at a prostate center of excellence
(however, I would wait for the 2nd path opinion). There are a number of them across the country. The purpose wold be to decide on the necessity of adjuvant therapy, to plan the specifics, and, possibly, to have the treatment there.Has the reason for your breathing difficulty been found?
I'm sure other Forum brothers will come by to welcome you. Please keep us posted and the very best of luck. Personally, I would get the 2nd path opinion, since further treatment is based largely on your path findings.
I know all this sounds scary, but a very good outcome is not out of reach. Concentrate on your continued healing from your surgery. We are all here to support you!