Intraductal prostate carcinoma: What is standard treatment?

Posted by dodgerblue @dodgerblue, May 1, 2023

Seems this diagnosis is rare. E Does anyone know what the “standard of treatment” t” is the best approach to this issue?

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@dodgerblue

I can find no medical practitioners who have any knowledge about Intraductal carcinoma. I’m still looking for answers. In the meantime, I’m considering a prostatectomy. Very frustrating, to have no answers. I’ve been told it’s because it’s only 1.2% of prostate cancers. Most results are dismal.

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I am 57 and had a radical prostatectomy last fall (Gleason 7 - 4/3). Based on my experience, I would highly recommend a radical prostatectomy. When you chose to do the RP at a center of excellence like Mayo-Rochester, they have the latest tools/procedures (robotic assisted surgery, nerve sparing, etc.). For me, the most uncomfortable part of the surgery related to referred shoulder pain (from expansion gas) and the catheter. It took about a week for the shoulder pain to reside and my catheter was removed after a week as well. in my case, I wanted to get the cancer out of my body and did not want to rely on imperfect tools/scans to track any remaining cancer within my body (if it was localized). Fortunately, post surgery pathology indicated that the cancer did not spread. I now feel confident that I have done everything possible to rid my body of this cancer. However, I am a realist - The cancer could come back because of micro-metastasis (time will only tell).

For me, the most aggressive choice (RP) was the only logical choice - 57, healthy, life expectancy (without active cancer) hopefully 30+ years, willing to put up with potential negative side effects (impotence, incontinence) Fortunately, I have done well with side effects, but I have been aggressive in rehabilitation habits. However, everyone has to make their own decision based on personal life expectations - Life estimate, willingness to put up with side effects, etc.

Good luck with your decision and I pray all goes well with whatever path you choose.

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You're physician or team should be able to tell you what the recommended treatment is based on the most current research and data, and what the mortality rate is. They literally input your diagnostic results into a grid and it spits out the recommendation or options.

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I’m speechless. You have my respect for being a fighter. I’m having a prostatectomy next week. Thus far, as near as a Psma petscan shows, it has not metastasized. Not looking forward to this. I’m sure it’s gonna be a long journey. I’ve read and been told it may, MAY, not be hormone fed. I’m going to rely on my medical oncologist, all I can do.

Keep fighting Pauljay!

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@dodgerblue

@colleen young
Thank you for your post. After almost 12 years of active surveillance on a 3+3 cancer, this diagnosis has been very frustrating. I appreciate your taking the time to respond. Intraductular cancer is so hard to find information on. Not sure it exists.

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It exists. I have it. It's not good. It's dangerous.
In my case, since the cancer has spread to my entire skeleton, surgery would be irrelevant and radiation would kill me, so I'm on Lupron and abiraterone.
It's been about 17 months now and I'm doing well.

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@colleen young
Thank you for your post. After almost 12 years of active surveillance on a 3+3 cancer, this diagnosis has been very frustrating. I appreciate your taking the time to respond. Intraductular cancer is so hard to find information on. Not sure it exists.

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@dodgerblue

So if I’m reading right, you said the Mayo oncologist said he felt “IMRT was the right choice”? I’m with you, I feel someone should have better answers for us. However, it’s only 1.2% of prostate cancer, so there isn’t likely to be anyone doing any immediate research!! I feel like we are on a desolate island with no rescue headed our way.

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@dodgerblue, I'll just add that there may not be a "right" answer, but rather the right answer for you. That's because for prostate cancer several treatment protocols have been proven to be equally effective. However each type of treatment brings a different set of potential side effects. Often treatment choices are made based on which side effect you feel you would prefer to deal with. That is a personal decision.

So efficacy of treatment is important to be informed about. Learning about potential side effects is equally important. While the immediate desire is to eradicate the cancer, you also want quality of life for living after treatment.

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@dodgerblue

So if I’m reading right, you said the Mayo oncologist said he felt “IMRT was the right choice”? I’m with you, I feel someone should have better answers for us. However, it’s only 1.2% of prostate cancer, so there isn’t likely to be anyone doing any immediate research!! I feel like we are on a desolate island with no rescue headed our way.

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The Mayo oncologist did start off with " looks like you have done everything right so far". This was a reference to IMRT and Lupron.
Every situation is different so you will need to find the Doc that works for you
It does start out as a deep dark hole. It was the worst psych trauma my wife and I have been thru (52yrs). Every test and scan showed a worse situation and the R. Onconcologist (not Mayo) would not return my calls. I ended up on Xanax. Rest assured it does get better. I no longer take or need xanax.

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@spryguy

Why radiation over surgery ‽ I don't exactly know why I made the choice. I don't like anesthesia or hospitals? I had no support or guidance. I was lost and confused. When I finally saw the Mayo oncologist I was told that it was the correct decision. ( easy to say after the fact) The side effects of IMRT are minimal compared to RP. I am feeling good with the decision and lucky I made it. My expectations going forward are remission for a while and then recurrence. Such is life. The medical establishment is failing men like us. We need to have someone to provide counseling at the diagnosis. That first critical decision could make the difference in outcome. Best of luck to all.

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So if I’m reading right, you said the Mayo oncologist said he felt “IMRT was the right choice”? I’m with you, I feel someone should have better answers for us. However, it’s only 1.2% of prostate cancer, so there isn’t likely to be anyone doing any immediate research!! I feel like we are on a desolate island with no rescue headed our way.

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@dodgerblue

I REALLY appreciate your comments/response. I’m curious as to why you chose radiation over removal of your prostate? My doc, who describes the issue as mysterious, feels removing would allow pathological studies to determine precisely what we are looking at. Case studies I’ve found are not promising. I, as of yet, have no indication of metastasis. I’ve been engaged in active surveillance for low grade, 3+3 Gleason for almost 12 years. I wish you the very best. Never would have thought we would be encountering such an unusual challenge. I have filed with the VA under the newly enact pact act. Please continue to let me know how you are progressing.

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Why radiation over surgery ‽ I don't exactly know why I made the choice. I don't like anesthesia or hospitals? I had no support or guidance. I was lost and confused. When I finally saw the Mayo oncologist I was told that it was the correct decision. ( easy to say after the fact) The side effects of IMRT are minimal compared to RP. I am feeling good with the decision and lucky I made it. My expectations going forward are remission for a while and then recurrence. Such is life. The medical establishment is failing men like us. We need to have someone to provide counseling at the diagnosis. That first critical decision could make the difference in outcome. Best of luck to all.

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@colleenyoung

Hi @dodgerblue, welcome. I'm tagging fellow protate cancer members @1hockeyjeff @spryguy @biih and @zj69 who also have intraductal carcinoma of the prostate. They can share their treatment experiences.

Dodgerblue, what treatments protocols were suggested for you?

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I’m sorry Colleen, I didn’t see your question at the end of your kind posting. I’m new to this, never done this before!! Bear with me please. I’m trying to decide between radiation, 38 treatments and prostatectomy. Because of the unknown, it is very confusing. I do know, based on the limited knowledge of Intraductal, I need to move quickly, with a decision. Thank you so much! BTW, I’m 75 and in pretty good health.

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