My aggressive intraductal PCa (0.88 Decipher) does not express PSA/PSMA very well (see my bio). Dx in June,2022. I've been getting 3 month Eligard injections for the last 7 mos., to continue for possibly 11 more mos. Just completed 28 sessions of IMRT.Since PSA testing may not be very helpful for my type of cancer, what type of scans and/or bloodwork should I be getting, and when, to monitor my situation going forward.
I'm still pretty new to all of this, and I'm looking forward to your suggestions and advice. Thank you
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Danskor
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I would request to have PSMA PET/CTs to monitor the cancer. They are the ones with the highest detection rate. They are approved by the FDA and they are covered by Medicare.
I had a Pylarify PSMA PET/CT in August,2022. One of the impressions was "heterogeneous uptake throughout the prostate gland without suspicious focal uptake, suggestive of a non-radiotracer avid malignancy (I'm not sure what that means exactly). This, in turn, limits evaluation for metastatic disease." My MO and RO graded my tumor as a T3B.
If the cancer does not express PSMA, then a 18F FDG PET/CT could identify metastatic cancer. Consider to discuss having 18F NaF PET/CT to identify bone mets if the FDG PET/CT is negative..
You should have 2 years of Eligard. After that, you can still have PSA tests -- you express at least some PSA. If PSA increases, an FDG PET scan may be informative.
Low differentiation of disease activity is problematic in diagnosis without a doubt! My PSA has been low throughout my journey. PSMA differentiation as well. Most scans over the years noting "possible" but probably "not" ... Even when my PCa had spread to me Peritoneal and Appendix, the PSMA scan showed some inflammation near my appendix (lymph node, which were clean btw) and made no note of the spotted lesions found when they went into my abdomen to remove my appendix with suspected appendicitis, not for PCa.
Stepping back, it's the IDC-p that is an adverse features, known to be associated with poor prognosis that is often set aside by oncologist. It is not a specific grading or risk stratification that will create different treatment plans as you now know and are undergoing standardized care. To my knowledge there are no isolated studies with specific therapies applied and used to try and discover efficacy over others for this adverse features found during diagnosis. Best you'll get is notes on patients who might have is as part of another risk group.
So the question is what to do? What to do? Use a feather or a hammer when treating? But oncologist are reluctant to step outside the SOC protocols... So there's that too.
2 years indeed... But I'm wondering why maybe you're not being given additional drugs as well. Adding a hammer to the mix!
I also have been diagnosed in 2021 via biopsy with indraductal Pca…as others have noted ,oncologists tell me, little. It is also aggressive due to a high decipher score .89…I am taking another PSMA today… last week had aMRI prostate…
I took firmagon (ADT) last year that lowered my PSA to practically O. I gained weight and it extended my stomach and some man boobs…I stopped after 6 months…But as you say this kind of cancer doesn’t give off that much PSA…though my guess is my RO seems to go by that..
I also don’t know what it all means…I might be told to take more ADT which may or may not be helping…What i understand is that this kind of cancer stays in the prostate at least that is what i have read…I am exploring SBRT but not sure since it would be more radiation…i was initially diagnosed in 2004 with PSA of 6.9 and gleason 6, and now this! Had 8 wks of EBRT back then.
I can’t be of much help. I don’t read any articles about intraductal any more…However, I understand your feelings…
“What i understand is that this kind of cancer stays in the prostate at least that is what i have read…”
That seems to be the case. But with prostate cancer never say never to developing something new and “exciting”. In think many of us have multiple types of carcinoma
Intraductal prostate cancer is similar to ductal prostate cancer, but it starts in a different area of the ducts. Intraductal prostate cancer starts in the cells that line the ducts, but it stays within the ducts and does not spread to other parts of the body.
I was diagnosed with “ductal” type a couple of months after you. PSA never over 1.1, bone metastases biopsy PSA-Negative.
I originally thought “ductal” was different than “intraductal”, but googling again this morning they seem to have pretty much the same description in terms of low PSA expression, aggressive behavior, etc. A breast cancer article says they’re the same thing in breast cancer.
Maybe one of the sharper members here can clarify if there’s an actual difference between the two for us. I actually just used Darryl cancerbot to explain the difference and it gave the answer I've posted at the end of this message.
The older “AXUMIN” PET/CT really lit up multiple tumors in my prostate and plumbing, LN, and bones. MRI w/contrast caught much of it too.
User: difference between ductal and intraductal prostate cancer
Cancer Copilot Sure, I'd be happy to explain the difference between ductal and intraductal prostate cancer.
Ductal prostate cancer refers to a type of cancer that starts in the cells lining the ducts of the prostate gland. This type of prostate cancer is usually more aggressive than other types and has a higher likelihood of spreading to other parts of the body.
Intraductal prostate cancer is similar to ductal prostate cancer, but it starts in a different area of the ducts. Intraductal prostate cancer starts in the cells that line the ducts, but it stays within the ducts and does not spread to other parts of the body.
It's important to note that both types of prostate cancer are uncommon and account for less than 5% of all prostate cancer cases. However, if you or someone you know has been diagnosed with either type of prostate cancer, it's important to work closely with a healthcare team to determine the best treatment options.
Do you have any other questions or need more information?
My DX was "Prostatic adenocarcinoma with ductal differentiation", Gleason 9-10, Ki-67
perforation index greater than 90%, grade group 5, PSA 1.12.
My cancer did spread to a pelvic muscle 3 months before planned radiation treatment. A pain that was.
My Mayo plan today is regular pelvic CT scan /6 months with blood checked quarterly. I have had two PSMA scans done only to have them followed up with pelvic CT scan which ruled out their faint findings. This is after a year of Keytruda/Lupron/some Zytiga/Proton Beam treatments.
If it wasn't for my symptoms, this cancer would not have been found.
I wish you all the best in beating down and beating this beast!
PSA, extended metabloic panel, thyroid (ketruda side effect) and testosterone (wishful). My T has not returned and almost a year since off Lupron. I believe the cancer destroyed my sex glands. Someday I hope to be proven wrong! That is my only gripe today, I will take it! Thankful.
Thanks for the reply. I want to be prepared when I see the MO next month. I'm only scheduled for PSA and T, but will ask about getting comprehensive metabolic panel and perhaps complete blood count (CBC). Hope your T returns back to normal soon.
My pathology same as yours...except mtastisis to pubic ramus, l4- l5...vrtabrea....have kept bear in hibernation 5.5 yrs with lupron / erleada...latest psa.... .4.......
I believe we are all Unicorns to the MO's as Ductal is not the normal garden variety PC. My MO is quite excited about my current status, but admits they don't know enough about ductal and got lucky with my response.
I got in titan trial at dx....my onc...has used the term...great response. ....to aplutimide....
I have intraductal G9, cribiform, PNI as of 10/2019. Currently PSA 1.5, recent PSMA and FDG scans negative. My MO checks status every month including serum neuron specific enolase (NSE). My value is 17, stable for the last 18 months. If NSE rises it implicates transformation of the cancer to a neuroendocrine state, then PSA, AR and PSMA will not show. You can also check Chromogranin A, indicating a possible T-NEPC as well. Intraductal type often leads to NEPC during the course of the disease - median around 3 years from initiation with ADT. Neuroendocrine cells express DLL-3 rather than PSMA. Based on your diagnosis I would ask to include NSE as a additional marker for monitoring. Probably a lu177 treatment attaching DLL-3 will be available during 2023 😅
As for now I am on a local BAT trial, PSA has stabilized.
Thank you 😊 so much for the great information. I will pass along some of this info to my MO a few days before my appointment next month. It sounds like you are really doing a great job of battling your disease and I wish you all the Best.
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