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Rare Forms of Prostate Cancer

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Posted 9/24/2016 12:19 AM (GMT 0)
Very interesting article on rare forms of prostate cancer. Some of them are aggressive and do not produce PSA.

http://prostatecanceruk.org/prostate-information/rare-prostate-cancer
Posted 9/24/2016 1:04 AM (GMT 0)
Interesting that they don't mention IDC=P..Intraductal Carcinoma of the Prostate. It is rare and does not have a PSA marker. I have this and it's basically graded as a gleason 4/5 according to Dr. Epstein. The worst part of this is there is no standard of care and insurance companies have no clue so getting scans as a tool just like psa tests is a struggle.

Todd
Posted 9/24/2016 2:10 AM (GMT 0)
Thank you for the post. I have Ductal cancer. Had 18 years of digital exams and 8 years of PSA. All were fine until they were not. Stage 4 D1, T3N1Mx. Doctors are having some issues figuring out how to follow it as it does not rase your PSA.
Posted 9/24/2016 3:01 AM (GMT 0)
Boy, I had no idea there were that many variations.
Highlander64 - they mention Ductal under Glandular prostate cancers. Is ductal and intraductal the same?
How do these rare types with low PSA affect advanced screening?
Jo
Posted 9/24/2016 11:36 AM (GMT 0)
JoJo, Intraductal is not the same as ductal. IDC-P is closest to IDC-B (Intraductal Carcinoma of the Breast) from what I've read.
Dr. Who, I am in the same situation with having an aggressive form of prostate cancer that does not have a psa marker (My RO called it a bizzare variation last visit). We have agreed the only way to possible see whats happening with the IDC-P is periodic 3T MRI's (every 6 months). As I stated....the insurance company does not understand rare forms and it's already becoming an issue of what they will allow for scans and frequency.
Posted 9/24/2016 12:06 PM (GMT 0)
This is the pathway they are going to use to track my Ductal Cancer. The pathologist "re-stained" the lymph node slide with was "100%" cancer to determine if it was positive for PSA. about 70% was sensitive for PSA which left 30% of the cancer "PSA insensitive". For the cancer that does raise the PSA They will Run blood work every six weeks at first then slowly expand it to every three months then six months. To keep ahead of any cancer that does not raise the PSA I will have bone and CT scans every six months. The RO had to be on the phone with the insurance company for hours just to approve this. He is worried that they will change there mind as time goes by. They will not approve for a MRI. Note, Henry Ford Hospital payed out of there own pocket a positioning MRI that they used to better align the radiation.

I agree that if you have a rare disease the insurance companies can be the biggest hurdle from getting the correct treatments.
Posted 9/24/2016 12:59 PM (GMT 0)
Hello,were there any SEs like pain in the crotch area etc. that led to further testing ?
Posted 9/24/2016 3:16 PM (GMT 0)
My husband had ductal as well. Because it doesn't increase PSA like regular cancer, it is very difficult to know you have it until it's advanced. And normal prostate biopsy doesn't not catch it; in fact, Danny was diagnosed just a few months after a normal test. He had complained to his urologist that he was having a hard time peeing, but because his PSA wasn't elevated, the doctor treated him for BPH. After a year or so of the meds not helping, Danny asked if there could be something else, especially since there was blood in the urine. This actually made the doctor mad. Needless to say, he went to another urologist who immediately did a CT SCAN and there it was. Initially, we did not know if it was prostate or bladder cancer. Pathology came back ductal prostate that spread to bladder and surrounding areas. We immediately went to MD Anderson for second opinion and so far, Danny is still cancer free!!!
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