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Dan087 profile image
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Hi, very glad to have found this community. I'm 53 years old. I was recently diagnosed with "intraductal adeno carcinoma" of prostate. PSA tests have been normal through the years (1.3 in December), actually dropping from 2 years ago (2.0). Tumor discovered by DRE at annual physical with primary care who sent me to urologist who sent me for biopsy. Biopsy showed 3 of 12 samples with intraductal carcinoma (at 40%, 50%, and 5% each). Biopsy referred to it as "non invasive" (confined to ducts) and so there was NO Gleason score. MRI showed "mild transition zone enlargement" and 10.5 x 7.0 mm focal T2 hypointensity. I've met with two surgeons and two radiation oncologists. Conflicting advice given. Surgeons both say RP is needed quickly due to "aggressive" nature of this type of cancer. Radiation folks suggest more of an "active surveillance" approach (re-biopsy, saturation biopsy, etc). It's clear that none of these doctors have seen many patients with my diagnosis. Does anyone here have any knowledge/experience regarding this type of PC (with no invasive component)? Based on the significant potential side effects of the different therapies I've been researching, I am very conflicted about next steps ..

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Dan087
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erjlg3 profile image
erjlg3

Welcome Dan. Even though we wish you didn't have to be here. Good wishes.

🌼Jackie

Tall_Allen profile image
Tall_Allen

This is rare, indeed. IDC-P that is not invasive has a good prognosis. It has to be watched though, because prostates with such cancers are often found to have higher Gleason scores later. I think AS is reasonable as long as you have a confirmatory mpMRI-targeted biopsy within a year. Radiation or surgery are reasonable too.

ncbi.nlm.nih.gov/pubmed/260...

tucker_man profile image
tucker_man

Dan, it doesn't appear anyone else on this forum has had this or they haven't seen your post yet. I can understand your frustration when you get surgeons saying one thing and the rad onc's saying another. I would have expected them to be more in alignment since both treatments provide similar results (though with different side effects). I would search for other online support groups to see if anyone there has had your diagnosis. Seek out a third opinion if practical. You can have your biopsies sent to Mayo (I believe) for another opinion at the very least. As Tall_Allen states, this is known to be associated with higher grade carcinoma elsewhere in the prostate. I'm sure you are doing google searches on this and reading everything you can. If you're considering AS based on what has been found so far, or treatment based on what might not have been found, then you should ease your mind by getting more data points, i.e, the mpMRI that T_A suggests and/or the saturation biopsies the rad onc suggests. I personally wouldn't base my decision solely on the biopsies you've had. For me, I had an MRI fusion biopsy and they found no cancer in the PI-RADS 4 area noted in the MRI, but found cancer in one of the 12 cores, the same area that came up empty in a previous biopsy. My point being that the 12 core biopsies are just blind stabs and can miss cancer.

Jeff85705 profile image
Jeff85705

Welcome, Dan, to the club nobody wants to be a part of. No Gleason score??? I would recommend second opinion from a clin. oncologist specializing in prostate cancer and a radiation oncologist. Also, get a copy of the biopsy report. There must be a Gleason score if they are saying the cancer is "aggressive."

Dan087 profile image
Dan087

Thanks everyone for your helpful responses. I had my urologist send my biopsy slides to Dr Epstein at Johns Hopkins for a second opinion. His pathology report also indicated intraductal cancer which was "non invasive". The report says the following "whether these lesions represent cancerization of ducts and glands by invasive carcinoma or a de novo lesion arising within the ducts,... definitive treatment is recommended". So, in summary, the small biopsy sample found something that either could be associated with a very aggressive cancer or maybe is just a precursor lesion. Not a lot of helpful data to base a treatment plan on in my opinion. Has anyone had experiences with re-biopsies. It's only been 5 months since my initial biopsy but I feel obligated to find out what exactly is going on as the "aggressive cancer" possibility is kind of freaking me out. Has anyone done saturation biopsies (where they take 36, 48 or more samples) or mp MRI biopsies? Is mp MRI the same as "fusion" biopsies? Which would you recommend in my case. The doctors I have spoken to mostly just want to send me directly to RP (surgery). I also have to worry about whether a second biopsy would be covered by insurance. Would love to hear anyone's thoughts on this.

Florida24 profile image
Florida24

Dan: I received the same diagnosis back in September 2017. The wording on my pathology report (from Dr. Epstein) was the same. None of the other biopsy samples showed signs of cancer so there was no Gleason score. The DRI and MRI didn't show any sign of a tumor. Because of a family history of prostate cancer (my father), my doctor recommended treatment rather than a wait and see approach. My feeling on the second biopsy at the time was that it could possibly confirm the type of cancer better, but that no matter what I had some sort of cancer. It's bad enough to hear a diagnosis of cancer, but when you hear 'aggressive' combined with it, it gets pretty scary. My feeling was that the best course of action was prostatectomy, which I underwent in November 2017. The biopsy results were a Gleason score of 7 stage pT-2C with clear margins Since then my PSA has been undetectable.

I've had ups and downs with the side effects of the operation, but I suspect that I would have experienced issues had I opted for radiation. But I do know that the wait and see approach for me would have just prolonged the inevitable. I am certainly thankful that I found this early enough to be treated. Take a little more time on your decision. Gather all the facts you can and if it gives you piece of mind, get another biopsy done. I'm not sure what a fusion biopsy is, but if its something that gives you more information to base your decision on, than it might be a good idea. Good luck.

Dan087 profile image
Dan087 in reply to Florida24

Thanks Florida24. I am going to have the fusion biopsy done in two weeks. They will combine the images from my MRI with the ultrasound images to target where they take the samples. Hopefully this will pinpoint where I'm at and will prompt a decision on my part. Treatment will most likely be prostatectomy due to my age (54) and doctors telling me once radiation is done, surgery is no longer an option should there be a recurrence.

What was surgery like for you? Was it done in Florida or somewhere else? Luckily I'm in the Boston area so have access to some very good specialists. You mentioned "ups and downs with side effects". What has been the hardest part for you? Do you have any regrets with going the surgery route?

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