Intraductal Guys ~ Please check in!

Carolyn,

The pathology report came back as IDC-P so that's all I can go by - not ductal. But asking about genetic testing is on my list when we meet with oncology next week.

Also been doing some reading about Thomas Seyfried's (PhD) theory that cancer is a metabolic disease and suggests a keto diet to starve cancer cells. Possibly this could be used as additional therapy.

Have to wait for pre-auth by the insurance company to get the chest CT Scan done.

cspivak,

As I don't know how familiar with Dr. Seyfried's theory, there are others in the cancer field who are now investigating metabolically supported therapies for the improvement of cancer treatment. At Barrow Neurological Institute, Dr. Adrienne C. Scheck, (PhD) is researching the potential of a therapy known as the ketogenic diet to complement traditional treatments for brain cancer such as radiation and chemotherapy. (see https://www.barrowneuro.org/research/research-programs/brain-tumor-research-center/scheck-laboratory/tapping-the-ketogenic-diet-to-fight-brain-cancer-scheck-lab/)

Perhaps this might become a new therapy to augment the traditional current cancer treatments. Only time and more research will provide a better understanding of using diet to increase survival time.

I just found a first post by an new member diagnosed with Ductal PC and will refer him here. But, before doing that I wanted to try to understand the difference between intraductal and ductal. I found these two short papers at Standford that describes them and how they are different and how that difference doesn't seem to make much difference.

Prostatic Ductal Adenocarcinoma

Prostatic Intraductal Adenocarcinoma

Can't say I completely understood the information. It sounds like the two cancers look a bit different under the microscope but they seem to overlap in clinical practice since patients with one of them will often have a bit of the other.

Bentnotbroken,

We did the initial RO appt this past Friday. I don't feel that we are any further ahead or have a definitive course of treatment. Based on the bone scan report, the RO put in an order for a CT on left humerous (arm) to determine if this is a met or not, and if it may need biopsied based on the CT report. The RO also wants to review the results of the Chest CT done today that was ordered by Pulmonary due to lower lobe lung findings in a Jun 2017 & Nov 2016 Abdominal CTs.

Also RO ordered a PSA, done today (no results yet) but Uro previously said that the PSA isn't a reliable markers for IDCP. SO's highest was was only around 1.1 or so just last year.

The RO did do a DRE and said a could feel some hardening which is the first time we ever heard that. SO had two incontinence accidents that night & some blood in the next morning at his first voiding but nothing since then. There was only a mention of possibly doing a transrectal prostate biopsy since the only biopsy done so far was on the urethral lesion near the prostate.

I asked about getting a second opinion on the existing biopsy which the RO may be considering. I suggested Epstein at John Hopkins as a possibile second opinion. Based on the staining that was done, the RO suspects the IDCP diagnosis is correct.

RO mentioned ADT/radiation but wants to discuss SO's case with Uro. I got the impression if reports indicate that if SO's condition is too far advanced there would be no reason to remove the prostate since he is a high-risk patient due to other medical issues.

I did see that the RO does CyberKnife but I'm not sure if that requires the patient to handle MRIs for the targeting. SO was told in past that MRIs aren't possible due to his St. Jude pacemaker.

Then to top it off today, SO's PCP had ordered an Occult Blood Immunochem and I got a copy of the report which stated it was positive - fecal globin detected. We see the PCP tomorrow.

Then I got a cardio appt set since I saw that ADT is risky for patients with cardiovascular issues - just in case this is the recommended course of action.

I am just beside myself at this point and I am circling the drain. I wish there was some knowledgeable person who could work with us and help us deal with all these specialists. My stress and anxiety levels are through the roof to the point of becoming non-functioning. If we don't have too much more time together is just wasting quality time we could be having.

Based on the results of this past Monday's Chest CT, Pulmonary is setting up a lung biopsy. I asked about doing genetic testing on the biopsy tissue but Pulmonary stated that they don't do that. Arrgh!

I asked the RO about getting genetic testing done. He asked if SO had any family history of breast or ovarian cancer which SO said he didn't think so. I got the feeling that the RO wrote this off. SO did mention that his brother died from pancreatic cancer (see below for my concerns about getting testing done).

I really think someone should be doing genetic testing but don't know who that would be. Any suggestions?

I ask because I saw a video by Dr. Alan Bryce (Mayo) on Genetics in Prostate Cancer (https://www.urotoday.com/video-lectures/5-for-5-hot-topics-e-david-crawford/video/767-embedded-media2017-05-05-16-34-22.html). His summary slide states "Germline BRCA mutations define a high risk population for prostate cancer. Risk assessment must include family history of breast ovarian, and pancreatic cancer."

SO

Biopsies can always (in my experience) be sent out to third parties for testing. Maybe Pulmonary was just saying that they don't do it in house. But a doctor can order it to be sent to a third party.

Usually it's the medical oncologists who are more tied in to genetic testing. ROs are specialists in other things. With all due respect to your RO, who may be a fantastic RO, his question about family history, and then brush off, says to me he's thinking only about germline mutations (those which are there from birth).

Somatic mutations are those that show up in the body/tumor that were not there from birth. Both kinds can be important.

If you've found an MO by now ask him/her. But I would definitely show your RO this article which I referenced earlier in this thread:

/www.ncbi.nlm.nih.gov/pmc/articles/PMC5347709/

The title is " Mismatch repair deficiency may be common in ductal adenocarcinoma of the prostate". DNA mismatch repair mutation with advanced (and advancing on treatment) PC is FDA approved for Keytruda. If your RO hasn't heard about that, Google "NY Times Keytruda", they have a good article.

I hope I don't come across as one of those people that pushes a particular treatment. But if (if! Due to the ductal/intraductal question and the small numbers) your SO has a 40% chance of having access to what's been so successful so far with mine, well, I'd hate for you to miss out on it.

Regards
-- Carolyn

Got MO appointment scheduled for next Monday in the same practice as the RO. Happens that this MO was recommended by a cancer patient advocate I've been speaking with. Waiting to get SO's lung biopsy scheduled with an interventional radiologist. Uro and RO want the results of the lung biopsy to determine if prostate biopsy should be done and what they treatment plan would be. Waiting for call back to schedule.

For the few that have IDC-P and stumble on here.

https://ro-journal.biomedcentral.com/articles/10.1186/s13014-019-1267-3

This may be an old thread, but after reading through it, it appears quite valuable because the issue has received scant attention on this forum. Moreover, I am led to believe that the medical world has little solid info that would be helpful to patients of the kind referenced in this thread.