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

jobu

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

jobu

Happy New Year everyone,

 I wondered what everyone's experiences were with MRIs and tracking ILC. My presurgery MRI showed a 1.7cm tumor. The pathology from the surgery showed tiny tumors (1.2cm largest) spread across a 5.5cm area. This sent a red flag up with the oncologists who said put me at higher risk. I had TC prior to surgery and as a result of the pathology I just finished four rounds of Adriamycin to be as agressive as possible.

 I am meeting with my surgeoin tomorrow to discuss next steps. I am wondering in my case if an MRI is a reliable way of tracking my ILC. If they can't see all that is there, then how do we know we have it all. And how can we track this in the future? Has anyone else had this experience? Have your MRIs been unreliable when compared to the actual pathology? I am pressing to have the scans reread at UCSF to see if possibly the raidiologist made a mistake? I hear that radiologists all have different opinions and ways of reading it.

 This has been a hell of a year for me. I am a single mother with a 10 year old daughter and very little family support. I have been out of work since diagnosis. I really never want to go through this again. I don't know if I should move ahead with radiation or ask for a mastectomy? I could really use some support now. I would love to hear your experiences.

Thanks,

Jobu

HensonChi

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!

HensonChi

Oh by the way I also had 5 biopsies and one of them was an MRI Guided biopsy.  

jobu

I did have clear margins in the surgery, so that's great. But how can we monitor this for future occurances if it's not visible on the MRI?

HensonChi

That is a good question....I think they told me I would have MRI's...although the doctor himself found mine using an ultrasound machine.  I finally heard him say "I GOT IT."  They knew it was there because unfortunately mine had gone to a node and boy was that swollen, so it was like where's waldo with me.  I was glad that the techs were no longer looking for mine after the 2nd ultrasound and a Doctor took over....he was wonderful!

Gitane

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

Thanks for your feedback Gitane. I really appreciate it.

My surgeon just called and said they are going to review my MRIs and pathology at the UCSF tumor board on 1/13. I feel good about this as there will be several radiologists and breast surgeons present to review everything. Bottom line...if they can't see my cancer on MRI then I don't know how we can monitor it? It's a huge decision for me about having a mastectomy or not. I guess I should sit tight until I have concrete feedback and then go from there. I meet the UCSF oncologist tomorrow afternoon, so I will bring up your point about the AI.

I didn't get much response on the Marin County survey here. I don't know who reads these posts. I plan to tackle that when I am done with treatments. We are rated the highest for breast cancer in the country. I certainly would like to know more about that, especially with having a daughter.

 Thanks much for your input!

nash

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.

jobu

Nash,

Yes I have read the same thing about MRIs being overly sensative. I will let you know what the tumor board says. Thanks so much for your support. It really helps a lot.

 Jobu

wallycat

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.

trigeek

just wanted to butt in:

Mammo showed 2.1 cm tumor
MRI showed 1.8 cm tumor
Surgery revealed an 'at least' 2.5 cm tumor.

Go figure !