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Intraductal Carcinoma (IDC-P)

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Posted 3/19/2016 4:45 PM (GMT 0)
Allen and Jack,
I will take your advice and start calling. My hope is Dr. Sanda has both a great team and access to people who I need. I don't necessarily need him to be my doc...just him and his team/extended team. I know that after speaking with doc's out in Mayo AZ they have access to Dr. Kwan and some others who have experience and I asked if they collaborate with anyone out this way also. I think what I'm going to end up doing is go to Mayo in AZ because my brother is there and works with a world renowned doc (different feild) who has many connections and get the initial care I need while they set up a team to take care of the follow on. Mayo wants me out there right now because they state it is at a point where it needs to be urgent. Not sure about the urgency but I think this is my best option to get something done...I'm burning up weeks at a time doing nothing. I know at a minimum right now I need a multiparametric MRI of my prostate and pelvic to see whats going on and properly stage it and also the adrenal needs to be fully dx'd. Those results will help with determining the next step. Also need to see what insurance is going to approve...might not be doing any of this. -Todd
Posted 3/20/2016 11:26 PM (GMT 0)
Hilander,
Please read this thread. I am interested in speaking with you. I work in cancer research as a patient advocate and a new committee has been added to our organization SWOG. The committee is all about rare cancers. You'll get more information reading this link.

www.healingwell.com/community/default.aspx?f=35&m=3603861

I am working specifically on this type of prostate cancer with the new PA there.
Posted 3/21/2016 12:53 AM (GMT 0)
Todd,

Go to Mayo, don't waste your time at Emory/Winship. My urologist says they don't have the reputation that Sartor's group at Tulane does with advanced and tough cases. It doesn't look like you are considering even speaking with Sartor, so Emory would just be a waste of time and delay your treatment. They are good, not great. You need great.

You are connected to Mayo in AZ, you have family, they will collaborate with Kwon......get on the plane. Your posts indicate to me that is what you want to do.....so....just do it. Visiting Emory is only going to take time and then not place you with the level of care you need. In the time it takes to visit Emory you go to Sartor or Mayo and be well ahead.

I do think for you time is of the essence. For most men it is not and they can take 6-8 weeks to research and get started. You have an aggressive rare form and while you have to find the right oncologist that has good experience with this level you can not be relaxed in your search. There are five or so absolute top places to go, you have been given the names, get to one of them. Don't waste time on the secondary group. If I were you I would be getting to the best possible oncologist I could and do it quickly.

I would also be on the phone with Tony tonight, if you haven't already called him. He is smack dab in the middle of the premier Prostate cancer research group, Southwestern Oncology Group (SWOG). He is a great guy and has helped more men than can be counted to get to the best places for treatment. Contact him this evening.
Posted 3/21/2016 3:01 AM (GMT 0)
JNF,
Todd and I are in contact and I have found him a peer. But it worked in reverse. Our new group at SWOG and rare cancers has a new patient advocate who reached out to me. She has a similar patient needing guidance.

Todd has done a terrific job researching where he is today. When you consider the 40,000+ patient database at JHU has 78 confirmed IDC-P patients you can see how rare this is.

I point out that while IDC-P is rare that so also is IDC-B - Breast cancer is also. But less so. Epstein et al, recommends immediate surgical removal to discover what biopsy and imaging cannot definitively. Accurate staging.

Treatment in those cases are typically surgical, with lymphatic reduction, and addition radiation to more distant nodes with a platinum. Possibly with both a platinum and a taxan. It's all highly controversial as we don't have supporting trials in either breast or prostate.

I have reached out to the connections. I have also included a peer.
Posted 3/21/2016 5:17 AM (GMT 0)
From a friend:
"First of all, I do not use the term IDCP and do not treat patients with it differently. There is significant histological heterogeneity among mCRPC patients both at autopsy and in biopsy studies. However in a given patient non matter what the histology, there usually remain clones of the cancer that are AR driven and AR independent. In the future we may have a way to quantitate the ratio but not currently. Therefore we continue AR inhibition with Lupron in all mCRPC while adding agents that are either AR inhibiting (abi,enza etc) or non AR inhibiting (radium, Provenge, chemo). I cannot speak to this patient specifically (Not you Hilander) but he seems to have an AR independent propensity. Moreover he probably had mets at the time of diagnosis. Therefore LHRHa should continue and non AR directed therapy should be added. Hope this helps"

Post Edited (Tony Crispino) : 3/21/2016 12:02:40 AM (GMT-6)

Posted 3/21/2016 6:05 AM (GMT 0)
To be clear Nicks response is not specific to Hilander but to a more progressed patient.

Hilander, your common recommendation is surgery. But radiation may be effective...I'll explain more when we talk.
Posted 5/23/2017 8:03 PM (GMT 0)
How are you today? I was diagnosed IDC-P from 2 cores. MD Anderson gave a Gleason 4-3. On second Lupron 3 month injection. Scans showed spots on skull and couple of small ones in a lymph node. Supposed to be scanned again in July but trying to get them earlier.
Posted 5/24/2017 12:48 AM (GMT 0)
Chuck, So far my treatment plan has been effective. Went through a year of aggressive treatment (Chemo, EBRT, Brachy Boost, ADT) and I'm still on Lupron (which I hate) and I have six month CT's done to try and keep on top of whatever the IDC-P may be doing since it does not have a PSA marker. I found out that there is no institution that specializes in this and it's basically treated as a grade 4/5 gleason so aggressive treatment is in order. I would think with almost an identical Dx you would be starting a more aggressive plan than just Lupron....Is there a treatment plan in place for you?
Posted 5/24/2017 2:23 PM (GMT 0)
HL, Thanks, I am attempting to accelerate my follow up scans. Communication has been slow on their end. I did have 30 days of Casodex with Lupron. Their plan is ADT then MRI plus CTs to determine if spots on original CTs have changed and simultaneously begin Proton Beam on the lesion.
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