Change in Treatment Protocols?

vbishop

During my 6 month checkup, I asked my oncologist about items I had heard and read about, namely studies were showing that AI treatments were being extended from five years to ten because of metastasize rates from years 6 to 10. Also, 30% of all early stage breast cancers metastasize. He confirmed them all and added that once you are diagnosed with breast caner, you will not be cured, as there is no cure.....but you can be in remission for the remainder of your life. Yikes!

Fast forward 18 months and now I'm told that three more years on my AI, if I continue to be NED on all future checkups, then at year 5 I will officially be cured. Huh?

Is this my doctor speaking or the insurance companies? My doc is well respected in his field and a straight shooter, so I am a bit confused by all this.

I asked about the studies extending AIs through year 10. I am told that they have modified their stance on that for patients below stage IIB. Those at stage IIB and above should still stay on AIs through year 10. I know they are finally doing more studies on ILC, so maybe there are changes.

I am not sure how I feel about this. I will be happy to be off meds, but a bit panicked that I will no longer be "watched" or "monitored". I feel like I will be flying without a net.

Anyone else hearing something similar?

wallycat

I feel your angst. I was on tamoxifen for 3-1/2 years only to read later that tamoxifen does squat for ILC, and the side effects were brutal for me.

So am I reading your post correctly...the same doc initially told you no cure but remission and later told you 5 years = cure???

All of us here know that breast cancer is one of a few cancers that is never considered cured. Remission or NED is what most of us live with, if we are lucky.

I'm coming up on a cancerversary and have been thinking about this quite a bit so I feel your pain.

The fact is that there are women who had surgery and did nothing else and lived NED till they died of something else while there are also women who threw everything they could at this monster and still had a recurrence. There is simply NO way to know how this plays out for any of us specifically.

I asked my onco about going back on AIs and she said nope. These also have side effects and longer term effects and it is a balancing act to get quality of life and NED status.

Best to you.

vbishop

Same doc...hence the confusion. Maybe my odds go wayyyy down for a recurrence after year 5?

Thanks for weighing in, Wallycat. I am sticking with the "no cure" stance and praying I stay NED for many, many years.

Course, my body is trying to come down with colon cancer. That's a whole different story.