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Three doctors, three different recommendations for time on Lupron

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Posted 4/19/2017 6:04 PM (GMT 0)
Sorry for the length of this message..

I know there have been discussions on the best length of time to be on Lupron, with many favoring shorter times. That said, I would appreciate people's recommendations in my case.

I have Ductal Prostate Cancer, a rare and agressive form that effects about 0.4% of the men with prostate cancer. Based on pathology slide tests about 30% does not respond to PSA staining (i.e, can not be followed by PSA tests). From what I read about Ductal, the best way to track it is with scans along with PSA testing. The radiologist and urologist think scans once every other year are enough. The medical oncologist thinks I should have scans to test for the PSA negative cancer about once every four months. I am going with the medical oncologist recommendation, that is, along as the insurance company agrees.

There is literally not enough data on Ductal cancer to come up with much more than anecdotal treatment options. The radiologist is worried about side effects of Lupron and wants me off it now. The urologist wants to use a standard two years on Lupron. Both of them think it can be treated like "normal " prostate cancer. The medical oncologist, on the other hand, is worried about lack of data on Ductal. As a result, she wants to be agressive and have me on Lupron for the rest of my life.

The side effects of Lupron really suck, but if it keeps the cancer at bay, I am willing to do so.

I would appreciate any comments.
Posted 4/19/2017 6:34 PM (GMT 0)
I don't have any answers, but I'd have a few questions:

Do you have a mixed type?
Does your cancer express androgen receptors?
Is it responsive to PARP inhibitors?
Is it responsive to platins?
Have you sent specimens into the NCI- MATCH study?
What use are more frequent scans? What would you do differently if there are more mets?
Posted 4/19/2017 7:10 PM (GMT 0)
My first reaction is that the treatment is now in the hands of the medical oncologist, so why listen to all three? But, have any of the three had experience with treating ductal PCa? If not, I would suggest you find a medical oncologist that has experience with ductal PCa and have a consult to see if a different course would be considered or confirming the one you are on.
Posted 4/19/2017 7:23 PM (GMT 0)
I have been on lupron since 2/2014 started with dual stomach area injections of firmagon 1/2014 and have lupron every either three or four months. I heard that it only works for 12-18 months, but my docs now say I will be on it the rest of my life???? So used to injections now dont feel them. Hot flashes good God, but not a big deal. Good luck Doctor WHO what side effects do you get?
Posted 4/19/2017 8:43 PM (GMT 0)
Dr Who -

I have met with 5 MD's regarding how long I should be on Lupron and received 4 different answers. We are different as I do not have Ductal PC.

Met with a MO yesterday and we agreed on a plan for me to have one more 3 month Lupron injection in May which will bring me to a year I will be on it. I told him I want to find out if the SRT worked so I want to stop HT at some point. He only told me, as we know from Allen, that continuous HT shows a small benefit over intermittent.

Anyway, that's my plan and absent of any clear cut guidance to the contrary, I feel one year of HT is reasonable at this point.

Bobby Mac
Posted 4/20/2017 1:08 AM (GMT 0)
Dear Tall Allen and others;
Boy I have a lot of reading to catch up on. Here is what I know, and more importantly, what I do not know.
1) I do not know if it is 100% Ductal or a mixture.The pathology report initially made it sound like it was only Ductal. After about three months of me pestering them they stained a slide from my lymph node. 30% of the cancer did not stain for PSA. The pathologist stated that this 30% could still be Ductal or another cancer variant. He made it sound like he could not distinguish.
2) I do not know the answers to the next three questions. Non of the doctors ever discussed EA receptors, PARP inhibitors nor platins.
3) I will have to look up the NCI match study
4) The medical oncologist is worried about the negative PSA cancer. She wants to treat it like non-prostate cancers where the only way to follow it is scans. The goal is to catch any non-PSA mets. as soon as they can. If found, they will treat it like normal cancer. For example, radiation for a bone met.
5) They made it sound like their only silver bullet is Lupron. If that failed, I will be looking at some sort of chemo.
6) The side effects they are most worried about are cardiovascular and bone loss (been measured as low bone density). I have the normal wonderful side effects of muscle loss, fat gain, fatigue, hot flashes and Lupron brain (which may also be do to worry on my part).

Again, thank you all for your comments and suggestions. You have giving me my research for the next week or two.
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