First International ILC Symposium | Sept 2016 | Pittsburgh, PA

PET/CT and ILC -- ILC Symposium 2016, Report from ShetlandPony

(This post is based on notes I took at the symposium, and reflects my own understanding. Please consult the literature and your own experts to verify and apply.)

My notes from G. Ulaner of Memorial Sloan Kettering Cancer Center, New York:

A PET scan uses a radioactive glucose tracer called FDG. Cancer cells tend to metabolize this at a faster rate than normal cells, and thus light up on the scan. According to Dr. Ulaner, "ILC is often less FDG-avid than IDC." Therefore it is not enough that the radiologist reports "no FDG-avid malignancy". He maintains that "...scrutiny of the CT component of the PET/CT is critical for patients with ILC." The radiologist must pay attention to the anatomic CT features and look for non-avid mets. It is important to use contrast for the CT. There is a problem with insurance not wanting to pay for a contrast CT and a PET scan in the same day, but same-day is the way to align the PET with the CT.

Dr. Ulaner also pointed out that "...ILC has different propensity for metastatic spread than IDC." Therefore the radiologist should look for gastric (e.g. thickened stomach wall), gynecological, peritoneal, kidney, retro-peritoneal (could indicate kidneys and/or ureter), and other mets.

The scan request sent to radiology may simply say "breast cancer". The radiologist needs to know that the patient has ILC, so he/she will pay attention to the unusual ILC met sites and to possible differences in FDG avidity.

Bone: PET/CT is useful for imaging ILC bone mets. It is more sensitive than a bone scan, and the PET part can show bone mets that the CT can't yet pick up. However, ILC bone mets are more likely to be sclerotic and non-FDG avid than IDC bone mets. While most ILC mets are FDG-avid, about 30% of ILC bone mets are not.

Breast: PET-CT is generally not the best type of imaging for the breast, and has even worse sensitivity for less-avid ILC. Breast MRI is the best type for imaging ILC in the breast.

New tracer development, possibly in trials: One is fluciclovine, a tracer for an amino acid. There is some evidence that amino acid transport is up-regulated in ILC. But fluciclovine is less likely to show a liver lesion because the liver processes it. Another tracer is FES, radio-labeled estrogen, which is very sensitive for ER+ cancer including ILC. However, as ILC becomes more poorly differentiated and aggressive, it becomes less FES-avid and more FDG-avid.

Thanks for the info. Interesting about the pre-meno/Tamox. I was premenopausal and in year 8 of Tamoxifen/post-chemo when my PILC recurred.

I am a DES daughter. I never took any hormones, HRT, or birth control. I was diagnosed with pleomorphic ILC, pleomorphic LCIS - bifocal, and invasive tubular carcinoma. I also was diagnosed with PASH, ALH, and FEA. Thank God that I was diagnosed at stage 1.

Here are links to more BCO conversations on this topic, in case anyone is interested. Someone may even want to start a similar thread in the ILC forum:

ER+ and had DES exposure in utero (in the Hormonal Therapy forum)

https://community.breastcancer.org/forum/78/topics...

DES Daughters (in the IDC forum)

https://community.breastcancer.org/forum/96/topics...

Wow. I had never heard of DES until this week and all indications (short of asking my mother) point that I am a DES daughter. My mom was pregnant with me in 1970, she had a miscarriage before me, and I have a tipped uterus. And my BC is lobular, which seems common.

Question is - do I want to know?

Do I want to ask my mother and make her wonder if something she did caused my cancer? (My dad already wonders about his agent orange exposure in Vietnam.) Do I want my sister to know? She was born 13 months after me and I assume may also be DES daughter.

Numb, I just posted info on thread Any Triple Negative ILC out there? It will have just come up on Active Topics. Best news I've heard in a long while!

OPTIMIST - Just found where you posted it, thank you so much, I knew I read it somewhere but didn't know where.

Numb, yes, you read that right. It's the first time I have read anything so optimistic about pleomorphic. Everything else, including presentations at the symposium painted a more pessimistic picture. I will take optimistic anytime! I guess being 7 years out from my initial diagnosis of PILC helps validate that finding. There a lot more of us on the PILC threads.

We are still waiting on the presentations, Sunnyone. Heather is having to gather the releases and it is going to take some time. There is a lot of interesting info, but, other than verifying that letrozole has been shown to be the first line of treatment, nothing that will cause us to run out and immediately change our treatment. They are still on the ground floor.

Sue

Sunnyone, I did post two of my own ILC Symposium summaries, one on tamoxifen and one on PET/CTs, on this thread October 5. I plan to work on more. (Not exactly what you are looking for, I know.)

Numb,

I don't blame you for wanting to hold onto some hope. I am more guarded when you see 100% guarantee verbage. Then to add to it, you have to look at how many people were studied and does it actually pertain to your subtype. Triple Negative PILC is so rare and difficult to get a group together to study that it would surprise me to see that happen. I would never place my hope on a 100% guarantee with only one participant in my subtype. I don't think that qualifies me as a doubting thomas. I have learned you have to read the finer print.

Southermother  -  I understand what you are saying, but to me at my stage if I see one person with triple negative PILC surviving for 5 years then it gives me some hope, that is how I look at it, but of course it doesn't matter what the results of surveys are really because even if 100 or 1000 PILC triple negative people survive for 5 years it doesn't mean that I will.  I would prefer to think that I would though

ShetlandPony, thanks for the links to the threads, above, re: DES. I don't read the Hormonal Therapy or IDC boards so I would not have seen them. I wasn't jumping in with the intent of providing personal testimonial or to divert, just hoping that some of the researchers might have this on their radar. There were a lot of us born during the period the drug was prescribed.

As to the imaging, most interesting to note that PET/CT is best for ILC bones. My guess is that unless one is suspected of being Stage IV at initial dx, we would have to be at the point where we're symptomatic in order to get insurance to pay for the PET/CT (in the U.S. system).

Amy, that is not the link, but it is the study someone else referenced. Thanks!

Sue

You're welcome, MmeJ. I didn't hear anyone at the symposium mention DES, but an ILC-DES connection would make sense since ILC seems to be a very hormone-driven bc subtype.