MRI or other scanning for ILC

collector

MRI or other scanning for ILC

collector

I had my breast MRI(both sides) on April 14 followed by lumpectomy in one side.  Now doing chemo to be followed by rads and AI.  How soon should I be pressing the oncologist for rescanning of any kind for the "good" breast as well as ovaries.  When I asked my gynec about the ovaries, he just mumbled that I should come in if I felt pain.  That's not good enough.  I know that ILC often appears on the other side and that it tends to spread to the ovaries.  Any advice appreciated.  I know I will have to be very proactive on this because the onc's office strikes me as disorganized and more concerned with treating the immediate than looking out for the oncoming train wrecks.

SLH

Hi collector,

I'll be interested to hear answers to your question.  I had a bilateral 3 years ago and I asked my onc if he was ever going to scan me.  He said that they don't recommend routine scans, because treatment was the same if they found cancer early with a scan, or later when there were symptoms.  So he told me to watch for symptoms.

So last Nov I started having pain in my upper right abdomen (liver area). Both my doc and onc weren't concerned, and finally in Feb I requested an ultrasound.  It showed nothing and I still have the pain.

Then I found swollen lymph nodes on the sides of my neck. After 3 weeks my onc ordered a scan that showed (yep!) 3 swollen lymph nodes.  But I'm supposed to wait and watch.

To me these are symptoms, but my onc doesn't seem concerned.

sally 

nash

Yes, the trend right now for followup is no scans in the absence of symptoms as far as looking for mets goes. I disagree with the line of reasoning that it doesn't make any difference when the mets are diagnosed, but that's the NCCN and ACS guidelines right now. So unless you have an old school onc who scans annually no matter what, that's the standard of care right now.

As far as local recurrences go, however, most oncs are doing annual MRIs for ILC patients, even though we're not considered high-risk for a new primary like a BRCA woman is  (again, I don't agree with this line of reasoning, and apparently most oncs don't either, thankfully).

I'm getting annual mammos and MRIs. The onc wants one or the other every six months; the surgeon wants them done annually at same the time (she said it's easier to biopsy something seen on MRI if you have a corresponding mammo to look at). So I'm not sure what kind of schedule I'll be on for sure yet.

But one thing the surgeon mentioned when I saw her last week was to wait a year after rads to have an MRI, b/c otherwise the MRI would light up like crazy with all sorts of radiation changes.

Another thing is, my rad onc did a mammo on the "bad" boob before radiation to get a baseline.

As far as ovarian mets go, from what I've read, it's very hard to find them--sort of the same problem the docs have in early detection of primary ovarian cancer. I do know that vaginal u/s is a good way to look at the ovaries, and that ovarians mets will sometimes light up on PET, but I also know of ILC women with ovarian and peritoneum mets who never had anything light up on scans, but whose mets were discovered when they had an oophrectomy. So if you're close to menopause, or if the chemo puts you into menopause, you might want to consider an ooph for peace of mind in the ovary department.  

collector

Thanks, for your info, Nash.  I know I am trying to think too far ahead in the future but since my 2 cm tumor was not felt by me or my gynec prior to the mammogram when I got a call back, I feel sort of helpless as far as looking for new sites or even recurrences.  How can you stay on top of something when you can't feel anything! Very discouraging and I feel like the onco sometimes loses track of the ILC diagnosis and how sneaky it is. 

collector

Hi, Sally.  Thanks for your response.  And here I thought a bilateral would have saved me from all this uncertainty.  Not so for you at this point.  I guess I need to make a long list of questions and make sure to get them answered when I go for my last chemo.  I've only had 2 of the 4 and for the third infusion my doc will be out of the office so not much opportunity until my last tx. 

wishiwere

Every onco is so different as well as the BS   I had both IDC and ILC tumors and the ILC was never seen on the dx Mammo or ultrasound even though we could feel it (the pcp, bs and I). Only when I had the MRI was it seen a week later in pre-op prep.

So when I finished chemo and found a lump about 6 weeks later in teh other breasts I was concerned.  The Dx mammo and US saw nothing more than the normal ridges and etc.  GREAT! Except for that 'lingering' worry in the back of my mind that WHAT IF it's ILC and isn't showing up again on these?  No MRI as THEY are sure it's nothing! WTH?  Soooooooo....they are all differing and all frustrating as to their follow up and so on.  Wish there was some definitive way to approach all this mess! 

collector

Wishiwere, looks like my Dx is quite similar to yours and finding a "something" is exactly what I am concerned about.  Is ILC just a mystery in this field?  The first onco office I consulted with would only say (cheerily) that it is the second most common breast cancer but NO ONE really wanted to address how to deal with it specifically.  With a lumpectomy and no real interest in reconstruction I thought I could deal with some uncertainty but of course now I am wondering.  I have heard that Mayo has an ILC expert on their staff and have wondered about getting an opinion there.

wallycat

My onco said he would gladly do a scan of anything I was concerned about because he feels quality of life (worry deadens that) is as important in "treating cancer" as surgery, chemo, etc...Having said that, his *recommendation* was at year 2 to do a PET scan; another at 5 years.  These, he implied, were critical marker years.

My surgeon was going to do an MRI, but as I have no breasts (no recon), there really is nothing to scan.  If I had breasts, he would do an annual MRI.  

I've had no blood work yet (I'm one year and a few months out).  This July, he thinks we'll check estrogen levels incase I want to switch to an AI.

I'm letting it go with the onco's recommendations.  Maybe it is silly, but at this point, I don't really want to go through tests that may find a b9 condition that will lead to more and more tests.  I am trying to put the cancer behind me. And yes, my onco also said that mortality is not affected by great time-frame in scan dx versus symptom dx so I hope I can maintain this attitude.

Good health to you all ladies! 

Editing to add, Prevention magazine has just published a phase III trial for blood test for ovarian cancer.  It is a combo of various protiens and similar to CA-125 (actually includes CA-125 with others) and appears to be 99.7% accurate.  Maybe this will be added to our 1/2 year arsenal of tests. 

SLH

Frankly, I've wondered why they don't give yearly CA-125 tests to high risk women.  My mom was diagnosed with stage IV ovarian cancer 6 years ago.  She regularly has a CA-125 test to see if her cancer is growing.  When the numbers are up, she has another 4-6 month chemo regimen until the numbers are down again.  It has been a very effective way to let her have breaks between treatments.  And it seems like it could save some young women from having unnecessary hysterectomies.

Wally, I wish my onc thought like yours about scans. The first onc I saw prescribed doing nothing except surgery.  So I was very happy to find an onc who would prescribe an AI.  But I've never had a scan, and maybe it would give me peace of mind, considering I've had questionable symptoms.

sally 

wallycat

I fired my first onco and ADORE this guy...I think he may be from MD Anderson, but now I don't remember.

In any event, the CA-125 isn't used often because it gives too many false positives (infections, endometriosis, etc. will all show higher protein---false) and for many medical professionals, they think it is not cost effective.  I guess that brings us back to how many tests do you do as follow up if you get a positive (and it ends up being false)--plus the anxiety factor.

My onco is really considerate.  He actually gave me his email so I can forward any studies I find of interest.  What a concept---a doctor who thinks I can think .

I discussed the CYP2D6, which he had not heard of as routine for testing tamoxifen metabolization, but when I mentioned it, listened.  He ordered the test; then went to a conference in Texas and thanked me (can you believe that??) that I got him current on this as it was merely talk at the time.

nash

Wow, Wallycat! I think I may commute to Wisconsin to see your onc! He sounds fantastic.