Colleen Young, Connect Director | @colleenyoung | May 11, 2023
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?
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.
I am also confused and a little bit frustrated with this part of the journey. I am 75 yrs and diagnosed in 2/2022.
Prior to going to Mayo I received a biopsy thru my local urologist. In addition to a 4+3=7 gleason score it mentioned "evidence of intraductal spread". A few months later I went to Mayo (2hrs away). The biopsy samples were requested from the 1st pathology lab and re-analyzed by Mayo Pathology.
The new comment made was "prescence of intraductal carcinoma cannot be eliminated". The comment from my Mayo oncologist was my aggressive high risk cancer was "more aggressive " . The treatment did not change. It was (and is) 39 IMRT sessions (completed 7/2022), Lupron, and Zytiga (24 months w 8 mos complete). Currently my PSA is 0.1ng/ml.
Intraductal carcinoma is a newer discovery with little understanding. Given what you have described as a diagnosis and the difficulty in finding answers, I would strongly advise a "Center for Excellence " ( Mayo for example) to help with a path forward. I went thru the same distress until Mayo . Mayo Phoenix was very willing to work with the VA of N. Az. if you happen to be a vet. Holler if you have any questions.
Good Luck To All of Us
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
@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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Is Intraductal prostate carcinoma testosterone driven?
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?
-
Like -
Helpful -
Hug
1 ReactionI 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.
I am also confused and a little bit frustrated with this part of the journey. I am 75 yrs and diagnosed in 2/2022.
Prior to going to Mayo I received a biopsy thru my local urologist. In addition to a 4+3=7 gleason score it mentioned "evidence of intraductal spread". A few months later I went to Mayo (2hrs away). The biopsy samples were requested from the 1st pathology lab and re-analyzed by Mayo Pathology.
The new comment made was "prescence of intraductal carcinoma cannot be eliminated". The comment from my Mayo oncologist was my aggressive high risk cancer was "more aggressive " . The treatment did not change. It was (and is) 39 IMRT sessions (completed 7/2022), Lupron, and Zytiga (24 months w 8 mos complete). Currently my PSA is 0.1ng/ml.
Intraductal carcinoma is a newer discovery with little understanding. Given what you have described as a diagnosis and the difficulty in finding answers, I would strongly advise a "Center for Excellence " ( Mayo for example) to help with a path forward. I went thru the same distress until Mayo . Mayo Phoenix was very willing to work with the VA of N. Az. if you happen to be a vet. Holler if you have any questions.
Good Luck To All of Us
-
Like -
Helpful -
Hug
2 ReactionsI 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.
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.
-
Like -
Helpful -
Hug
1 ReactionWhy 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.
-
Like -
Helpful -
Hug
1 ReactionSo 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.
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.
-
Like -
Helpful -
Hug
1 Reaction@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.
-
Like -
Helpful -
Hug
2 Reactions