Intraductal PC

Hi everyone. Diagnosed with gleason 8 intraductal PC Dec 24th 2016. RP five weeks ago. Now the journey gets interesting.

Anyone been diagnosed with IDC? Apparently not that common, and is aggressive.

Best wishes to all.

[YostConner]

Hank,

I had not heard of that variety, so I looked it up. I hope you have a highly experienced medical oncologist on your team. It looks like Hopkins (where I'm treated, so I'm a bit partial) has done some study on IDC. Were your surgical margins clear? It's about time for your first post-surgical PSA. My fingers are crossed that it has dropped to at or near undetectable.

Yost.

[Hidden in reply to YostConner]

Thanks Yost. PSA looks good, except used Quest's less sensitive test (goes as low as .1 which I registered). My urologist (Yale) seemed pleased but my Decipher test came back at .91. No question adjuvant radiation and androgen deprivation coming soon (next couple of months).

I am due to see someone from the oncology team on Monday. You have reminded me to be prepared to ask some good questions on IDC. Thanks again

[Hidden in reply to Hidden]

Sorry - didn't mention that margins and seminal vesicles were negative but extra-prostatic extension was present..

[YostConner in reply to Hidden]

Some good news there. I always take my questions in writing, and I always have someone with me to listen with a second set of ears. Keep us posted!

[Hidden in reply to YostConner]

Thanks Yost. Good advice.

My wife (a Nurse Practitioner) says if you want to get at the right answers, preface question by saying "what would you suggest if your Father was sitting here instead of me"? Takes them off the hook a bit as sometimes the 'statistically digestible" solution is safer for them.

If you would have asked me in Nov that I would be studying Intraductal Carcinoma, I would have said...huh? How interesting how life can take unexpected turns.

[gusgold]

Nalakrats,

has something similar ...was doing real good until he lost a battle with a 20 foot gator in Costa Rica ....you can contact him at [e-mail]

[Hidden in reply to gusgold]

So he was undergoing Alligator Deprivation Therapy? I guess I can strike that one from the list

[Dr_WHO]

Sorry that you are here. Do they think the cancer was contained to the prostate? How were your scans? Did they remove any lymph nodes for testing? Have your doctors discussed treatment plans, including how they will monitor it?

We may (or may not) have similar cancers. My biopsy indicated that I had intraductal G 8. Scans indicated that it probably spread to the pelvic lymph nodes. Like you I had surgery where they removed 14 lymph nodes. The pathology report said that I had Ductal T3N1 that had spread to the pelvic lymph nodes. For a while I thought intraductal and ductal were the same. However, I was told that they are different. Not sure of how they differ. In any case both are rare and agressive. They both have the tendency of not giving off PSA, which makes it harder to track. Boy are we lucky.

The biggest issue I have is that most doctors (unfortunately mine), do not know much about these rare cancers, let alone how to treat them. If you find someone that does please let me know! For me, they decided to be a bit aggressive. Even though my PSA was <0.1 six weeks after the surgery I started a two year stretch of hormonal treatment (Lupron) about two months after the operation and had 38 rounds of radiation starting four months after the surgery.

At my insistence they took a slide taken from a lymph node that was "100%" cancerous and found that 30% of the cancer did not respond to PSA staining. As a result I am getting regular CT and bone scans. The issue now is how often to have these scans as the radiation from them can cause issues on their own. That may be something you want to discuss with your doctors.

Good luck and let me know how you are doing.

[Hidden in reply to Dr_WHO]

Had my appointment and will start radiation (39 treatments) in a little under two months. No ADT at this point.

Dr said that radiation treatment of intraductal is the same as it would be for the regular variant. Asked if Decipher test indicated extent to which radiation would be effective, and Dr simply referred to high Decipher score as indication that radiation was the right course of treatment.

[Dr_WHO in reply to Hidden]

Thanks for the update. I think that radiation is definitely the way yo go. Hope you make it through it as well as I did (I only had 38 rounds). Here are my worst side effects. Please note, non of them were that bad. Biggest issues were having to drive to the hospital five days a week, and the need to have a full bladder (to prevent the radiation from zapping your bladder). I got very good at toning from the radiation room to the restroom! I did feel "tired" towards the end of treatment and did have some bleeding in my urine. Again, not that major.

Please keep me updated and good luck!

[Hidden in reply to Dr_WHO]

"Only" had 38 rounds - weren't you lucky?

Thanks for the information. It's going to be a grind but hearing feedback like yours is helpful and reassuring. Hope for the best and we shall see. I will let you know how things develop.

Question- what was your PSA post RP and what is it now? How long has it been since RP? Thanks and best wishes

[Hidden in reply to Hidden]

sorry - saw you had noted this in your profile. Happy to hear things are going well. And yes, your profile looks very similar to mine. Interesting for sure

[Hidden in reply to Hidden]

I just received news that my PSA was .008. Too good to be true, but hope springs eternal.

My surgeon/urologist is a rock star. The battle isn't over, but he set me up with the best possible chance of victory.

All the best to everyone.

[Dr_WHO in reply to Hidden]

I am rapidly approaching my one year DaVinci surgery date (4/18/2016). Six weeks after the operation my PSA was <0.1 (Henry Ford only takes it to one decimal point). Started Lupron in June. They wanted to start radiation in June but I did not have good enough bladder control. I started radiation in August. All of my PSA readings since then have been <0.1. However, they think that ~30% of the cancer does not give off PSA (common with Ductal), so I am getting yearly CT/bone scans.

[Hidden in reply to Dr_WHO]

Interesting- my dr mentioned how high my PSA was pre-surgery for idc-p, which apparently isn't good as idc-p can hide under a low psa score. Looks like yours has. We shall see how diabolical mine is.

Anyway, thank goodness I am a geek as the subject, morbid as it is, is nevertheless fascinating.

[Hidden in reply to Hidden]

OK - Sharing good news is awkward with all the suffering, and doesn't mean much until the truth is told, but I had some good news. PSA - .008. It wasn't .1. My urologist/surgeon is as good as it gets. I am feeling very lucky and happy after quite some time. This feeling may pass, but nice to have it now. All the best.

[Hidden]

Thanks Dr Who. Lymph nodes tested negative as did margins and seminal vesicles. Extra-prostatic extension was evident.

Going to see therapeutic radiologist to talk about next steps. I am gathering questions on approach to IDC-P therapy to see if there is any differences in approach. Given it is rare, I suspect there aren't many experts, but I am getting top-notch care at Yale, and I suspect they are on top of things, or have the contacts into other research hospitals that know about IDC-P.

I will definitely be in touch after my appointment (Monday the 10th) and report on doctor's observations.

[Hidden]

I ran across a newly published study on IDC just days ago. Sorry ... didn't get a URL, but it shouldn't be hard to Google up.

[gusgold]

Nal.

you were right

Gus

search.proquest.com/openvie...

[gusgold]

Nal,

healthunlocked.com/advanced...

Gus