ductal prostate cancer

[benninger]

surgery 7/2017, gleason 10, psa 6weeks post op 3.4, psa 12 weeks post op 8.9, 14 weeks post op. 11. bone scan and ct scan on 11/1/2017 clean....new pet done on 11/15/2017 showing spot in shoulder and 3 in pelvic area.... what treatment next age 70

[BigRich]

Are you taking Lupron, Zytiga and Prednisone?

Rich

[benninger]

going back to dr. on the Wed. Wanted me to wait until a clinical trial started but after the Axumin pet scan, he wants me back to get down to see him on Wed.

[benninger in reply to benninger]

I will ask them but he keeps saying that a gleason 10 is the part that they are looking at. I had already read both of the articles on Ductal that you listed and it has me very scared. Really had to push to get the axiom pet scan done. pT3aNOMx listed at surgery but I am guessing that is wrong.

[Dr_WHO in reply to benninger]

You have to be careful when you read the articles about Ductal. Please know that this sight is full of men whom if you just go by what is published should not be here. Some of them have been here for over a decade or more. I was a T3N1 ( spread to the lymph nodes), but they still operated. While I am not a medical doctor I think you should go for surgery. A T3N0 means that as far as can be determined the cancer is restricted to your prostate. The Gleason 10 is major. I would getit out before it spreads! Even if there is mild migration getting out the primary source of the cancer is important. If you are like me, they want to do secondary treatments like radiation and the combination of Lupron and Zytiga.

I can not tell you not to worry. You just need to be as aggressive treating the cancer as the cancer is!

We are all on your side! You are not alone!

[benninger in reply to Dr_WHO]

Had biopsy done in April 2017 , (gleason 10) then had surgery on July25, That is when they said it was ductal stage v gleason 10. PT3NoMx lymph nodes came back clear but psa at 6week was 3.4 , 12 weeks 8.6 and on the 1st of Nov. was 11. cancer over 70% of prostate on both lobes, Established extracapsular extension, perineular invasion along with angiolymphatic invasion. axiom pet scan done last week spot in shoulder and spots in pelvic area. Going back to Pittsburgh (Hillman Cancer Center) this week to meet with Dr.No other treatment started yet supposed to get a hormone shot shot then. I think something else needs to be done.

[Dr_WHO]

Welcome to a very select group! Less than 0.4% of the men with prostate cancer have the Ductal type. It is hard to detect and hard to cure/manage. But hard does not mean impossible. Here is what I experienced. If you can, ask then to stain one of your pathology slides for PSA. They stained one of my slides after surgery from a cancerous lymph node and found that 30% of the cancer was PSA free. What that means is in addition to PSA tests I have to have scans to track the Cancer that does not produce PSA. It is the only way it can be followed. After surgery I had 38 rounds of radiation. That was followed by Lupron and later Zytiga was added to the mix. They found that the use of two hormonal drugs at the start had a longer survival time. Listed below is a link.

nejm.org/doi/full/10.1056/N...

Listed below are some general information on Ductal Cancer.

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

Yes, prostate cancer sucks and Ductal cancer really sucks. But I am here to tell you that there is hope. I was diagnosed with Stage 4D1 when I was 58 years old. I am now 60 and I am getting ready for a scuba trip. You have to do your own research and not be afraid to make your case with your medical team. I had to argue with the doctors at every turn as they know very little about Ductal cancer. Never give up hope! Will be praying for you!

Walt (a chemist not a MD)

[Teambaratta]

I just want to wish you love and peace of mind my friend im no expert at all and dont know much of what all this cancer is about but i can tell you my experience and what iv gone thru and still going thru .. i went in just for a yearly physical and found out my 1st psa was 155 then a month later it went up to 219 this was in Feb 2017, i am on lupron therapy and in 6 month the day before my surgery it dropped to 12 .. now in November im 2 weeks out of surgery iv had an prostatectomy w extensive lymph nodes removal i have 2 more weeks to have my followup to see how it all is going ... so what now , colonoscopy for furtherinformation and toprep for radiation if its needed .. hope i can help with anything... many blessing

[benninger in reply to Teambaratta]

started lupron shots yesterday along with casodex. Going to start chemo soon (Docetaxel). See If you can get them do a Axumin pet scan. Had a bone scan and a cat scan done on Nov. 1 . Both were clear but PSA was up to 11. Axumin pet scan done on Nov. 15 (1 week later showed spot in pelvic area and bone metastases in different spots. shoulder, femur, and 5 others. I am new to this also my surgery was in July 25, 2017. I send you prayers and hope they get you started on treatment soon. Axumin pet scan is something new. Hillman just started using them 6weeks ago.