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Lobular Sucks!

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Leigh68
Leigh68 Member Posts: 38

Invasive Lobular Cancer (ILC) manifests very differently from the more common Invasive Ductal Cancer (IDC). It is considered an "old lady disease" and I should not be having to deal with it at my age, but here I am. It was difficult to scour the boards for patients like myself in order to learn from the experiences and journeys of others. I thought it would be beneficial to all ILC ladies to start a thread just for us. Fellow lobular sisters are encouraged to share their experiences so that we all can learn and make educated decisions about our treatments

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  • Leigh68
    Leigh68 Member Posts: 38
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    This week I had my 4th PET/CT scan.It showed no signs of cancer activity – which is commonly known as NED. Not really a thing to celebrate as ALL of my scans have been NED since diagnosis. This means my cancer is slow and insidious - it has a mitosis rating of only 1 but plods on. Imaging shows I have "innumerable" sub-centimeter bones lesions – skull to femurs.I have been on Ibrance, letrozole and Xgeva since diagnosis about 18 months ago. Fortunately there is currently no pain, but I have read the trajectory of others and fear what may unfold.

    Yesterday my MO stated that the cancer "won't hurt you until it hurts you". What she meant by that is lobular cancer is difficult to detect on imaging and until I am symptomatic, we probably won't know when there is progression. She instructs me to report any physical complaints. I really don't have any other than the side effects from the damn hormone therapy.

    I did complain of some low level spinal pain in the thoracic region. As a result she ordered an MRI. I think this is a good idea to have as baseline imaging for anyone with bone metastasis. It is scheduled for early January. I will keep everyone posted.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Yes it does.

    Leigh, have you had an opportunity to hear Dr. Ulaner of MSKCC speak on imaging lobular mbc? He says, “Every ILC deserves one chance to be FDG-avid." Some ILC is not — that is, it does not eagerly take up the radioactive tracer for the PET scan — and in that case he says CT with contrast is usually the best type of imaging for bones. But do avail yourself of all imaging modalities as well as tumor markers, and see what is most reliable for you. I skimmed some of your other posts. I think you might consider getting a second opinion reading of your scans, maybe from the man himself.

    Also, I want to note for you and others reading that a good source of information is the Lobular Breast Cancer Alliance (LBCA) at lobularbreastcancer.org.

    I was also diagnosed when premenopausal. I think part of the “old lady" thing was because hormone replacement therapy for postmenopausal women caused an uptick in the incidence of ILC.

  • AnnC2019
    AnnC2019 Member Posts: 93
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    SI was diagnosed with ILC at 57 after being on a hormonal patch about five years due to bad hot flashes. I was actually given an estrogen only patch about 4.5 years and when I went to the gynecologist she said I should have been on a combo-patch because I have my uterus. She's switched me over immediately. I remember asking my nurse practitioner if she could check my hormones and she said it wasn't necessary. I do think this probably contributed to the growth. I guess this is just water under the bridge and hormone therapy comes with risk. In hindsight, I wish I had just put up with hot flashes because it might have slowed it down. My grandma got breast cancer at 84 I think and a 1st cousin of mine died at 40 about ten years ago from an aggressive type of breast cancer. I don't know what type she had and I don't want to ask my aunt because it is still painful for her.

  • nkb
    nkb Member Posts: 1,561
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    my lobular was very hard to detect so I was quite far along bilaterally when I had a biopsy. I never had an abnormal mammogram or ultrasound.

    My TMs are extremely high and so far have been pretty predictive for treatment response. I have PET scans which so far seem to correlate with the TMs. No pain, I did have severe anemia at the onset of my bone Mets - my bone marrow was stuffed with cancer and almost every bone was involved.

    They say that Mets come later with ILC and I seem to notice that people go along for many years and then suddenly go down hill. I have noticed before that there seem to be a lot of stage 4 with ILC on BCO-way more than the incidence in the breast cancer community.

  • melmcbee
    melmcbee Member Posts: 371
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    Leigh I was diagnosed at 42 with ER pos ILC. It metastasized after 5 years. I just metastasized again to the colon and it changed to ER neg. My tumor markers are useless. Bone lesions showed in CT scans but not bone scans. Its hard to track and it usually goes by symptoms for me. Ive had bone mets for 3 years and like I said its now in my colon and wraaped around my ureter. Just had a stent put in the ureter to keep it open I will be starting Xeloda on Sunday. I have been on faslodex prior for 3 years

  • Leigh68
    Leigh68 Member Posts: 38
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    thank you for the feedback Ladies!

    The MRI was clear and my back pain has resolved. Tumor markers (15-3) don't seem to be accurate for me - usually in mid 30s to low 40s. Last week was the highest so far at 45.

    Shetland: thank you for the information about Dr. Ulaner. I listened to his talk the other day and messaged my MO about getting a CT with contrast. She thought I was freaking out about the elevated 15-3 (I wasn't) and then messaged me back stating that my brain was never imaged so she ordered a brain MRI. Now I AM starting to freak out a little! Anyways, early on in all of this I did get a 2nd opinion at MSK. I'm trying to get a second 2nd opinion with Dr. Rachel Jankowitz at Penn. I always see her name associated with ILC. Has anyone else ever seen her?

    NKB: I'm glad your anemia has resolved. You mentioned that it seems there is a disproportionate number of people on BCO With ILC. The webinar that Shetland mentioned stated that incidence of lobular is growing much faster than IDC. I imagine that might be from better imaging modalities.

    Melanie: I know ILC likes to go to the abdomen and frankly that terrifies me. What kind of symptoms have you had with progression? Wishing you the best with the Xeloda. I will look for your updates

  • EV11
    EV11 Member Posts: 86
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    Hi, Leigh68--


    So happy to read that your MRI is clear and your back pain has resolved. Great news and I love to see it.

    I have an abdomen full of ILC metastases-- both inside hollow organs (stomach, colon, bladder) and covering those organs, as well as throughout the omentum and peritoneum. My ovaries were removed early in my disease course (summer 2015, dx de novo stage 4 in May 2015, perimenopausal at the time of diagnosis. I failed ovarian suppression for two months in a row-- my onc said those very vigorous ovaries needed to GO!) When I had the BSO, that was the first evidence of abdominal/peritoneal/ovarian/Fallopian tube mets. In the intervening 4 1/2 years I have developed intra-colon mets (visualized via colonoscopy-- never show up on CT, MRI OR PET scans); a dramatic increase in the number and density of the peritoneal and omental mets (finally showing up on CT scans as "thickening" and "stranding;" and I have a large (4.5 cm x 1 cm x 6mm) lesion covering the upper outer surface of my bladder. There is thickening of my stomach wall, consistent with gastric metastases; this offers a possible explanation for the digestive issues I have had since mid fall of this year. Severe indigestion; difficulty emptying my stomach (sometimes the only way I get relief is to vomit the food that can't get digested...ugh); and loops of colon that show up on CT scan as inflamed and dilated.

    It is only recently (since spring 2019) that I started having some mild symptoms that I attribute to those mets: my bladder seemed to feel full much sooner than in the past, and when I felt like it was about to burst, I was shocked at how relatively little urine came out compared to the urgency I felt. The lesion across the top of it prevents it from expanding fully, so it has a smaller capacity now...my small colon is prone to partial small bowel obstructions-- I have to be very careful about the foods I do and don't eat; I have bouts of intense diarrhea intermixed with constipation (neither was common for me in the past); my intestines make LOUD and persistent sounds as foods pass through them (my daughter can hear the rumblings from across the room!) I have developed ascites and I look like I am 5 months pregnant (I am very thin otherwise, so this looks very odd indeed on a 57 year old woman.) My stomach will have episodes of intense cramping as it tries to empty food from it into my small intestine. It's very uncomfortable. I am loosing weight that I can't afford to lose...

    For the first years of my MBC diagnosis we knew the mets were lurking in my abdomen, but couldn't capture them on any type of scans--but now that they have progressed so significantly, they are easily visualized on CT scans.

    I concur wholeheartedly that lobular is devious and difficult to identify and follow. Never mind trying to have "measurable disease" so you can get into clinical trials-- oh, the number of trials I wanted to get into but couldn't because my thickening and stranding, or the irregular edges of my bladder lesion, don't meet "RECIST" criteria. It's very frustrating indeed!

    Take care-I hope lobular stays far away from your abdomen. It's very challenging to treat once it gets a stronghold there.

    Elizabeth

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    My own guess as to why there are more ILC diagnoses would be that there are more xenoestrogens in our environment. Many toxins are estrogen mimickers. ILC is a very hormone-driven subtype, or at least early stage is. I, too, have noticed there seem to be more stage iv ILC folks on BCO than chance would predict. Though I failed in my attempt to count them on Zarovka’s How Many Are We thread.

    Regarding the brain MRI, as I understand it, ILC is less likely than other types to go to lung or brain. I did have my head examined at the request of my ENT, to look at inner ears. MRI normal.

    Melanie, as you may know, Xeloda gave me two years of NEAD, so let’s hope! What a nasty thing for bc to do, go to your colon and wrap around your ureter.

    Leigh, are you going to get a CT with contrast?

    In my case, the original ILC tumor was not the sneaky cancer one hears about. It was palpable, maybe because of the location and my low BMI. It showed on mammogram, ultrasound, and MRI. The mets show on PET-CT, CT with contrast, and MRI. Mets did not appear late, but just three years after stage I. It has not gone to bone, or anywhere else other than liver, as far as we know. That includes smack up next to my common bile duct, so now I have stents there because scar tissue from treated cancer caused a stricture. Weirdly, the CA 27.29 tumor marker was super accurate for years, and now suddenly it is just low and useless, even with growing liver tumors.

    It is relatively common for metastatic ILC to develop an ERBB2 (Her2) mutation, and this seems to confer resistance to endocrine therapy. Such a mutation shows up on my genomic reports, so my onc nurse is working on getting neratinib authorized for me. I am not sure what we will pair it with yet. First, I will do Y90 on the largest, most stubborn liver tumor.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Elizabeth, my heart goes out to you! So sorry you have to deal with this. What is your current treatment? Regarding RECIST, I heard there is a movement to allow liquid biopsy results to stand in for measurable-on-scan disease so that lobular patients can be included. I think I heard it on the webinar. I hope that happens soon. Can you access what you want through compassionate use?

  • Ihopeg
    Ihopeg Member Posts: 92
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    Ev 11,
    I know we have talked before on here but didn’t realize that you had Mets to the bowel area. I just got out of hospital for a bowel obstruction. They did three endoscopes and did biopsies and still couldn’t tell what the inflammation is. I had two stents but into my duodenum and biliary ducts. Can actually keep food down. I had constipation so bad that it got to the point I couldn’t even take a drink of water.
    Now 3 weeks later they are saying that it’s from lobular cancer I had 13 years ago. I have to go for a pet scan next week. I want them to do more biopsies to prove that’s what is it. I it is breast cancer I’ll have to decide what to do next. Any advice will be appreciated. Thank you Ilene
  • nkb
    nkb Member Posts: 1,561
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    It seems like the hormonal disrupters may have something to do with all this ILC also- mine never showed up on the millions of mammos and ultrasounds I had- barely showed up on breast MRI- the surgeon kept saying the masses and nodes were cysts. anyway- I hear that they are now worried about all the newborns that spent months in the NICU with all that plastic tubing- hormone disrupters! and make up?

    My TMs have just taken a big leap and I am suddenly profoundly tired- so AA has probably stopped working- I will be getting a PET and seeing my MO. So far it has stayed in my bones- but, certainly have seen many people with ILC have it go to GI.

    I am hoping that the Y90 and other meds are working and I have great interest in oral SERDS for us- if one could just get approved. I was told that if I had a 2 cm hole in one of my bones- I might qualify for RECIST for a study- course that bone would probably shatter if it had such a large hole. seems like ILC is still being ignored or not thought to be different that IDC.

  • iwrite
    iwrite Member Posts: 746
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    Leigh, Thank you for starting this thread.

    My ILC mets were smeared all over both breasts and sternum when diagnosed by pre-op MRI. It was stage IV de novo. Never showed up on mammograms all the years I did them. Just heard the words dense breast tissue.

    Sharing information here is so helpful!

  • Leigh68
    Leigh68 Member Posts: 38
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    Elizabeth, I hate that you are going through so much. This disease is horrendous. I'm guessing you were unable to get into the DESTINY trial. The webinar does mention a push for liquid biopsies to qualify as measurable disease but apparently that is still in the works.

    What is your current treatment plan?



  • BevJen
    BevJen Member Posts: 2,341
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    Elizabeth,

    Thinking about you and hoping you can find a treatment that works for you. Fingers crossed.

  • Leigh68
    Leigh68 Member Posts: 38
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    Friends,

    I called Penn and got an appointment scheduled with Dr. Jankowitz in a few weeks. The process was surprisingly easy. I am compiling a list of information to discuss based on all of the input on this thread - thank you! Definitely going to ask about the CT scans with contrast.

    I appreciate that everyone here “gets it”, because there is no one else around me who does. It makes everything a whole lot less scary and lonely.

  • BevJen
    BevJen Member Posts: 2,341
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    Leigh,

    She's the one you want to see -- she used to be at Pitt but recently switched to Penn. She is a lobular specialist. Please report back after you see her, because there are SOOOO few lobular specialists around.

  • Leigh68
    Leigh68 Member Posts: 38
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    The appointment with Jankowitz is in a few days - any specific questions for the "Lobular Specialist"? I will be happy to ask and report back.

  • BevJen
    BevJen Member Posts: 2,341
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    Leigh,

    Oh, that's great. PLEASE let us know how it goes. My questions are all the same as everyone raised above, and I think most of those are your questions too.

    Good luck. I'm thinking of trying to get a consult appointment with her as well, since I live only about 2 hours away from Philly. When she was at Pitt, I emailed her (before I definitively knew that I had progression) and -- lo and behold -- she actually responded! I always count that as a good sign, when a doctor cares enough to actually respond to a frantic email.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    I would be interested to know if Dr. Jankowitz has any sense of what therapies seem to work best for metastatic ILC; has she noticed anything that might nudge her toward some more than others? Also, has she noticed more ILC than expected among people with Lynch mutations such as MSH6 and PMS2? I was diagnosed with premenopausal ILC, and now a first degree relative with postmenopausal ILC. Should the other family members with this mutation be watching for ILC in particular? Third question: Does she think there might soon be a clinical trial for metastatic ILC in the USA? And are the American oncologists still insisting Tamoxifen is fine for premenopausal ILC?

  • BevJen
    BevJen Member Posts: 2,341
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    Leigh,

    I second what SP says. All great questions for all of us.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Ihopeg, do you have an update for us? I suppose treatment will consist of finding the right systemictreatment, along with doing whatever engineering helps your body to function. I have two bile duct stents. I’m on my third set. They are changed every three months. They work well, and I don’t notice any problems until we get close to exchange time, and then I start getting vague discomfort and fever. I think I may ask to exchange at 2 1/2 months next time. The endoscopist could only get a brushing the first time and it showed no cancer cells. The second time he used a tool called a spy glass, and maybe that helped him to get some actual core biopsies. But they showed only inflammation and scar tissue, presumably from treated mets. The liver/biliary specialist did some detective work with my past scans and found a tumor at the top of the duct from quite a while ago. He thinks this sort of imploded when it died, and caused blockage.

  • nkb
    nkb Member Posts: 1,561
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    Thanks Leigh- I am also interested in treatment differences and is ILC more immunogenetically active than other breast cancers. All I have heard is it’s the same garden variety cancer-

    How should my daughter be monitored- I never had an abnormal mammogram or ultrasound- the breast MRI barely showed theextensive bilateral cancer.

  • BevJen
    BevJen Member Posts: 2,341
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    Nkb,

    I have a partial answer to how your daughter should be monitored. I have a 32 year old daughter. I was originally diagnosed with lobular carcinoma in situ when I was 38, and invasive lobular cancer when I was 51. She goes to the same obgyn practice that I was going to when I was diagnosed both of those times. Her gyn told her to have a baseline mammo last year at age 31, and he said that she needs to watch it very closely.

    There are probably better answers than that, but at least I felt that they were "on it."

    Interestingly, I also had early stage melanoma at age 54. She was just diagnosed with an early stage melanoma. Coincidence? I think not. I'm convinced that they don't really know all of the connections among different kinds of cancer.

  • nkb
    nkb Member Posts: 1,561
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    BevJen- early mammos is what she was told- but, given my history with mammos etc not showing anything I think that is worthless advice. She was also told to have a baby early- more worthless advice ( recent studies show that the protective effect of childbirth comes 20 years later) 5/6 woman in my family have had breast cancer- yet. “ there is no proof it is genetic”. Worrisome indeed.

    I wish your daughter the best. It does seem that there is a connection - hope they get it figured out and protect her.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    A young woman with a family history of ILC should be getting breast MRIs, in my opinion. If the oncologist — not the gynecologist! — says she has over a 20% risk, insurance should pay. I have a family member who gets mammos alternating with MRIs, one every six months.

  • Leigh68
    Leigh68 Member Posts: 38
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    Everyone - thank you for your input...Dr. Jankowitz will be quizzed on all of your questions. Her recommendations will be posted within the next week or so.



  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Thank you very much, Leigh. Do get you own important questions answered first.

  • Leigh68
    Leigh68 Member Posts: 38
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    Apologies for the delayed post describing the appointment with Dr. Jankowitz.That was quite rude of me. Anyhow, these are the takeaways:

    1. There is usually never a rush to change treatments because ILC is a slow growing cancer.If you progress, take your time to explore all options. Also keep in mind that most clinical trials are for patients who fail their first line of treatment.

    2. For those with the PIK3 mutation, she recommends Piqray hands down (but don't change if your current treatment is working).

    3. Tumor markers are not useful to measure progression in many cases. My CA15-3 has slowly risen from 31 to 46 – which is an inconsequential change.If markers double in a month, then investigate.

    4. My young daughters should be seen in a high risk breast clinic and get MRI mammograms starting at age 39 (my diagnosis age minus 10 years). Although testing showed that my cancer was not genetic, testing is only done for the genetic markers we know about. There are others yet to be discovered.

    5. Dr. J's protocol for imaging is to get a PET/CT every 3-4 months and bone scans every 6 months. I currently get PET/CTs every 6 months and am comfortable with that.I have only had one bone scan, so I will ask my local onc about that.

    6. Dr. J's bone health regimen is Zometa monthly for a year, then quarterly.I found it interesting that Xgeva is not even on Penn's formulary because it is too expensive and many insurance companies will not pay for it.

    7. I asked about Dr. Ulaner's study regarding PET/CT vs. CT with contrast.She is familiar with the study and stated that it really concluded that if you don't light up a PET, just get CTs because insurance companies often place a cap on the number of PETs. Basically save the PET/CTs for when there is a suspicion of progression.PET/CTs are the gold standard.

    8. There are currently 2 clinical trials for ILC patients in the States, neither are for Stage IV. There are also 2 trials in Europe (didn't ask about those).

    The information above was specific to my case, but hopefully others can get something out of it.

    The trip to Philadelphia was definitely worth it.

    I hope everyone is feeling well.

  • BevJen
    BevJen Member Posts: 2,341
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    Leigh,

    Thanks so much for reporting this information. It is extraordinarily helpful.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Thank you, Leigh.

    I now have a first-degree relative being treated for postmenopausal ILC, stage 1. If the pathology had come back IDC, I would have considered it random postmenopausal breast cancer. But ILC? I blame genetics. Not good news for the other women in the family. At least we know to get the mammos and MRIs. I told them, if LCIS is ever found, make the surgeon remove it even though LCIS is only considered a marker of risk, because the two of us with ILC also had an LCIS component that obviously went bad.

    My onc mentioned Piqray as a next possibility. Only recently did the PIK3CA mutation show up in my tests. But right now we hope my trial drugs are working: Neratinib, Herceptin, Faslodex.