HER2 Support Group Forums - View Single Post - how long is too long to wait for a trial?

VDC · 01-20-2016, 01:13 PM

I appreciate the concern and the honesty! Really. That is exactly what I have been asking for from all of you. Just an honest appraisal.

This has been a fighting battle from the beginning. Since my cancer is "only" DCIS, (although grade 3 and necrotic to boot!) Mayo wouldn't even let me talk to a medical oncologist! (the chemo people) because chemo is not used with DCIS. It is surgery and radiation.....period. I had to fight (and I wasn't even ladylike in this case) to be allowed to speak with a medical oncologist. I was finally permitted to, but it was not without a lot of pushing and tears.

I do understand that DCIS does not compare at all to what all of you are facing and I would not even try to compare. But the thing that frustrates me the most is that this thing CAN and WILL become invasive if it hasn't already. The when and how isn't known by anyone. That is what I fear. No one knows.

Chemo isn't something they will even consider unless it goes invasive. BUT my likelihood of recurrence with current treatment protocol is somewhere over 25% and that is assuming they get it all and that everything is "clean."

Those aren't odds that I like all that well, particularly when I know that recurrence isn't likely to be a localized event.

So my choice is hard. Do I wait for a clinical trial which would greatly decrease my chances of recurrence? Or do I go ahead with surgery and radiation immediately in order to remove the risk of it turning invasive. How do you chose between those choices and how long is too long? None of my doctors seem to have any idea. None of them. Not the surgical oncologist, not the radiation oncologist and not the oncology doctor assigned to me. ....and the medical oncologist (chemo guy) pretty much laughed at me for even making an appointment to see him!

Let's just say that I'm frustrated with what is NOT known and none of my doctors are really all that helpful here.

01-20-2016, 01:13 PM	#10
VDC Senior Member Join Date: Jan 2016 Posts: 122	Re: how long is too long to wait for a trial? I appreciate the concern and the honesty! Really. That is exactly what I have been asking for from all of you. Just an honest appraisal. This has been a fighting battle from the beginning. Since my cancer is "only" DCIS, (although grade 3 and necrotic to boot!) Mayo wouldn't even let me talk to a medical oncologist! (the chemo people) because chemo is not used with DCIS. It is surgery and radiation.....period. I had to fight (and I wasn't even ladylike in this case) to be allowed to speak with a medical oncologist. I was finally permitted to, but it was not without a lot of pushing and tears. I do understand that DCIS does not compare at all to what all of you are facing and I would not even try to compare. But the thing that frustrates me the most is that this thing CAN and WILL become invasive if it hasn't already. The when and how isn't known by anyone. That is what I fear. No one knows. Chemo isn't something they will even consider unless it goes invasive. BUT my likelihood of recurrence with current treatment protocol is somewhere over 25% and that is assuming they get it all and that everything is "clean." Those aren't odds that I like all that well, particularly when I know that recurrence isn't likely to be a localized event. So my choice is hard. Do I wait for a clinical trial which would greatly decrease my chances of recurrence? Or do I go ahead with surgery and radiation immediately in order to remove the risk of it turning invasive. How do you chose between those choices and how long is too long? None of my doctors seem to have any idea. None of them. Not the surgical oncologist, not the radiation oncologist and not the oncology doctor assigned to me. ....and the medical oncologist (chemo guy) pretty much laughed at me for even making an appointment to see him! Let's just say that I'm frustrated with what is NOT known and none of my doctors are really all that helpful here.