My MRI and Pathology don't match? What to do?

I think it all depends on if the surgeon had clean margins.  I had ILC that the mammogram didn't pick up and then when they finally found it and biopsied it I had surgery.  It turns out that it was ILC surrounded by Ductal in situ.  She told me she got clean margins....I hope she did.  I ended up having tons of mammograms, 3 ultrasounds, and 2 breast MRI's luckily I switched hospitals in the middle of the first hospital not knowing what they were doing.  A second opinion sure helped me!

Hello, again, Jobu.  This has been a very long trail for you.  It must be good to know that just maybe you have the worst behind you now.  You probably know my story, I had multifocal ILC with scattered individual residual cells after treatment even after 4 AC, so I had more AC after surgery.  The chemosensitivity test at surgery showed the cells were still responding to it, so why not?  There is always a risk of residual disease, for everyone, not just ILC, in the breast with lumpectomy, that's why we get the radiation, to mop those up.

As for monitoring by MRI, I chose bilat-mastectomy.  My oncologist recommended no radiation after the mastectomies, so I don't need to worry about heart and lung damage from that.  (although depending on who you listen to the risk is small)  You had your MRI read at UCSF and they're one of the best for this.  I'd say, if you are going to agonize about it, have the mastectomy.  However, losing your breast(s) might not be something you want to do. It's a personal choice.  I'm curious as to whether you are considered having ovaries removed and going with an AI?  They say the AIs work better than Tamox. and I see you have low PgR expression, so an AI might work better.  Again, a personal decision.  

By the way, how did  your Marin County survey go?  I'm down in southern CA, but I'm sure there is not a huge difference in the demographics.  

It is hard to make these decisions. It is especially challenging when there is no clear path given to us by the experts.  Seems that it is just a huge puzzle, and we are muddling through the best we can.  Come back and let us know how you are doing with all this.  

Jobu--I was really interested to read that your MRI understated your tumors, b/c everything I've read/heard says that MRI's are overly sensitive, with a lot of false positives. There can also be problems with the contrast--I had some sort of artifact shift with mine that led the radiologist to read the tumor as 4.8 cm, when in fact it was 2.7cm. I did have a second radiologist review the films, and he read them correctly, placing the tumor at 2.5 cm. So I'll be really interested to hear what tumor board says about your MRI. I'll have my fingers crossed that the first reading was misread, b/c you're right--if you can't track your ILC with MRI, what are you going to do?

I have a 10 year old daughter, too (and a six year old son), so I understand your desire to get this all under control and minimize future issues.  I'm sorry to hear about the lack of family support--but I'm glad you found us here, b/c the women here are great, and you'll get the support you need.

My surgeon practically guaranteed that my tumor would be 9mm because his words "MRIs are 98-99% accurate these days."  I told him he'd eat those words.

Sure enough, my tumor was 1.8cm.

so much for accuracy.