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Topic: tell your Radiologist about Lobular Before your scan

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Sep 25, 2020 09:02AM - edited Sep 25, 2020 09:05AM by intheclub

intheclub wrote:

Hi everyone. I had a very interesting chat with someone who works in radiology. Our discussion came about because next wed im having FDG/PET scan to investigate bone and abdominal pain. I'm 7 years NED and my oncologist who has taken excellent care of me agreed that due to this pain that the scans are important.

So, I mentioned about my scan to this person in Radiology and said something like “It's always worrisome thinking that the Radiologist will be unfamiliar with Lobular due to its rarity and may not know the pattern of spread or the sneaky tricky way it grows - I might see if I can send the radiologists some info to read on lobular"!

My friend said that she thought this was a great idea. Later I phoned the scan provider spoke to the practice manager and she said that would be great because although they are continually learning/upskilling/training that it sounded to her like lobular is indeed “out on its own". She said try to send only a couple of pages.

So I know there is lots of info out there - lobularbreastcaner.org being an excellent example of a spectacular portal/resource for lobular clinical information.

My question is this - is there a particular paper that best meets the needs of trying to remind the radiologists what they are looking for with lobular Mets.

I have some papers bookmarked but does anyone have a strong recommendation on this - remembering that I cannot send loads of info as I need to get it read not put in a file!

I am not for a moment questioning competencies rather I am putting a safety net in place just in case the radiologist is unfamiliar on lobulars presentation and behaviour.

It's not about what they do and don't know or their processes of getting scans double/read. It is just me a lobular survivor wanting to keep it that way by checking in on their awareness of lobular.

Thank you.

Dx 4/12/2012, ILC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/15/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left Radiation Therapy 6/29/2012 Breast
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Sep 26, 2020 05:20PM nash wrote:

See what you think about this paper:

https://www.ajronline.org/doi/full/10.2214/AJR.13....

It's one of my favorites, in part because I think the information presented in Table 1 is very eye opening.

That's great that you found a radiology group that is willing to look at info that you provide them. I'm on my fifth oncologist, because the prior four oncs refused to pay attention to the peculiarities of ILC, and the radiology groups they used were equally uninterested. I am now finally with an ILC savvy oncologist and radiology group, and it's like we are all talking the same language.

I'm one of the weird cases where not only do I have brain mets and cranial nerve involvement, but I also had ILC land in my extraocular muscle. My CNS mets were all found because I was symptomatic, and then were confirmed off of imaging once they knew where to look.

Good luck with your PET--I hope your bone and abdominal pain turn out to be non-cancer related!

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Sep 26, 2020 06:19PM - edited Sep 26, 2020 06:46PM by intheclub

Hi Nash

Thank you so much for replying with this excellent clinical research paper. It captures so well the things that I need to communicate to the Radiologist!

It is so kind of you to help me with my endeavour to take a chance on giving the Radiologist information that may help them look at my scan differently. I
was just starting a document copying and pasting as well as trying hard to avoid radiologists thinking that I'm basically second guessing their competencies and that I'm just another crazy patient thinking they don't know how to read a scan who thinks theyve got Mets!

You have had such a massive amount of stuff to deal with and because of your tenacity you are now with a team who understand lobular - but isn't it heart-breakingly awful that you had to demand better clinical standards of care - four times to be heard and to get the correct diagnoses!

I am so appreciative of your reply and I will keep you posted on how this goes. I will be in touch with you. Thank you SO much Nash.


Dx 4/12/2012, ILC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/15/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left Radiation Therapy 6/29/2012 Breast
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Sep 26, 2020 07:38PM BevJen wrote:

Wow. That was a really interesting article with some interesting statistics. Very helpful to all of the lobular folks.

This particularly struck me, because my first metastasis was to my cervix:

Breast cancer metastasis to the uterine cervix is extremely rare, with an estimated frequency of 0.8–1.7% [30]. Only 36 cases have been reported in the literature to date [31, 32]. Given this rarity, the incidence of ILC metastasis to the cervix is unknown.


Lucky me the first time (2006). My MO at the time had told me that it was very rare, and here's the proof.

Thanks for posting.

Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Sep 26, 2020 08:02PM nash wrote:

You're welcome, intheclub! Feel free to private message me any time. I know what you mean about wanting to keep the radiologists informed without sounding like an alarmist.

BevJen, you and I could start a funky metastases club! When I had my met to my extraocular muscle, my local radiation onc sent my MRI to MD Anderson's radiation tumor board in Houston. They said they'd never seen such a thing before. Welp, now y'all have!

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Sep 26, 2020 11:02PM - edited Sep 26, 2020 11:08PM by ShetlandPony

JOURNAL ARTICLES

Thanks to the BCO member who sent me these. I am unsure whether she would like to be credited. (Thank you so much. You know who you are. Please PM me if I may credit you.) Edit: I see that the first one is the same one Nash posted above.

Distant Metastatic Disease Manifestations in Infiltrating Lobular Carcinoma of the Breast

https://www.ajronline.org/doi/full/10.2214/AJR.13.11156

Imaging of metastases from breast cancer to uncommon sites

https://researchmap.jp/i-imaoka/published_papers/18828484

Lobular Breast Cancer Metastasis to the Colon,

the Appendix and the Gallbladder

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4317682/

Metastatic colonic and gastric polyps from breast cancer resembling hyperplastic polyps

https://pubmed.ncbi.nlm.nih.gov/29572575/

(Thank you to Bestbird for this one):

Leptomeningeal metastases in breast cancer

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3623833/

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Sep 27, 2020 09:19AM abigailj wrote:

I really appreciate this valuable info so wanted to thank you all for sharing it. Even though I have no scans scheduled, given that I had ILC in one breast (IDC in the other...) this is very helpful to have just in case. My best wishes to all for a peaceful and happy day.

Dx 1/2020, ILC/IDC, Both breasts, 2cm, Stage IB, 0/4 nodes, ER+/PR+, HER2- Surgery 6/23/2020 Mastectomy: Left, Right; Reconstruction (left): DIEP flap, SIEA flap; Reconstruction (right): DIEP flap, SIEA flap
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Sep 30, 2020 04:47PM - edited Sep 30, 2020 05:19PM by intheclub

Thank you Nash and everyone for the great links and info which is so important to Lobular patients.

As the scan I was having is an FDG PET scan I emailed them the presentation below from Dr Gary Ulaner, Memorial Sloan Kettering Cancer Centre which was presented at breast cancer symposium - specifically speaking about lobular and imaging. Here is link to his part about lobular FDG PET scans. I also did my best to transcribe some quotes from his presentation as I had been told that it's just easier sometimes to read something rather thank click links which sometimes don't work. These comments below are specific to Lobular and it's ability to be non FDG Avid - requiring the radiologist to beware and to scrutinise the scans.

https://youtu.be/lKhNOtLjofg

Some key points from his presentation:

“When dealing with lobular patients it is important for people to realise that the FDG/PET is less sensitive for Lobular than Ductal and we know there's different propensity for the sites of Mets between lobular and ductal - both of these things make Lobular cancer harder to see in FDG PET CT.”

“A warning to interpreters that lobular is harder to detect. Although the majority of lobular Mets are avid you just have to be cognisant that there are a minority of patients whose lobular will not be FDG avid. So scrutinise the CT to be certain there's no evidence there of disease and don't rely on just the FDG PET.“

“There is a substantial minority where Lobular Mets are seen on CT but NOT on FDG PET."

“Some PET interpreters may look at the PET and say "there's no FDG Avid malignancy therefore these are benign. BUT as we see in the patients prior image these osseous lesions are new and these are non FDG avid. So these lobular Mets show up on CT or MR but not on FDG PET. Be wary of Lobular."

"Despite no FDG Avidity in an earlier scan there's new schlerotic lesions which represent lobular Osseous Mets picked up on CT scan but again not on FDG PET. "

“And this is not just with the bones. Lobular cancer unfortunately goes to uncommon areas like GI tract, peritoneum - and so we see thickening of stomach wall but again NOT FDG avid - but the CT findings were suspicious."

"The Radiologists have to scrutinise CT images for any evidence Of malignancy and NOT rely on Just the FDG PET for finding the lobular Mets."

"It is critical that the Radiologist realises that FDG PET is less sensitive for lobular than ductal."

“Lobular bone Mets are almost always schlerotic whereas ductal Mets are lyric"

"Finally Lobular cancer deserves one chance to be FDG Avid. But beware."
ENDS


Thank you again to everyone who replied and offered their thoughts and copied links - I am so grateful to each and every one of you, we are definitely stronger together.

I hope others can use this information too when having FDG PET scans.

Best wishes to everyone and thank you again.






Dx 4/12/2012, ILC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/15/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left Radiation Therapy 6/29/2012 Breast
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Sep 30, 2020 05:08PM ShetlandPony wrote:

Great notes, intheclub. For the sake of accuracy, the doctor’s last name is Ulaner. (Maybe spellcheck changed it in the post above.).

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Oct 3, 2020 04:12PM intheclub wrote:

Greetings everyone. My scan came back all clear.

It noted that I have a “23 mm round apparently simple cyst within the rightovary is nonavid. A fibroid is suspected in the the fundal uterus.“ Thank you again to everyone.


Dx 4/12/2012, ILC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/15/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left Radiation Therapy 6/29/2012 Breast
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Oct 3, 2020 05:10PM MinusTwo wrote:

intheclub - Good news. Thanks for coming back to share.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 3, 2020 06:52PM - edited Oct 3, 2020 06:54PM by abigailj

that's great news about your scan and thank you for the presentation notes too, much appreciated

Dx 1/2020, ILC/IDC, Both breasts, 2cm, Stage IB, 0/4 nodes, ER+/PR+, HER2- Surgery 6/23/2020 Mastectomy: Left, Right; Reconstruction (left): DIEP flap, SIEA flap; Reconstruction (right): DIEP flap, SIEA flap

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