Hello. I'm new, and thank you.

macmomma
macmomma Member Posts: 62
edited July 2018 in ILC (Invasive Lobular Carcinoma)

The background to this is that I am 57 years old--very, very healthy otherwise-- and my husband was diagnosed in March 2017 with multiple myeloma. Because of myeloma support forums, we found a curative therapy for his cancer. We went through two rounds of VDT-PACE chem followed by two stem cell transplants and three years of immunotherapy ongoing. Now, 15 months later, I'm diagnosed with ILC. I am a physician, and I am a strong advocate. I know I have a very bad family history of cancer. At this point, the enhanced mammograms show only a 4-5 mm "abnormality," but because I insisted on a biopsy (a thread for another day--the worst experience of my life), they found the cancer. Waiting the MRI and genetics. Can't get the MRI because of the extensive trauma from the biopsy. (My hypothesis is that the ILC cause hypervascularization of the region which caused significant bleeding and trauma). Can't do the mastectomy for another 4 weeks because of the trauma. I am determined to have a bilateral mastectomy. Partly because my husband is under the Sword of Damocles, I don't want another over me. The other part is because I know I have a lousy family history. My breast surgeon is very supportive of this.

Here is my question--when my husband was diagnosed, the first information we received was sort of "just be content with palliative therapy and maybe we can keep him alive for 10 years." I'm kind of aggressive, and so would not accept that, and found a curative protocol with Bart Barlogie, MD at Mount Sinai. I'm wondering if there is a "super aggressive cure doctor" for ILC, and if so, who that is.

The best I can tell, ILC can very reasonably be treated locally--there is no reason to go to a specialized center. But, if I'm wrong, I'd like to have information from you all about that. I live in San Antonio, Texas. There is a very good cancer center here, and there's an MD Anderson satellite clinic as well, but I'm willing to go anywhere.


Finally--what should I tell my early 20s children--two boys and a 20-year-old girl. Especially the girl--about screening.

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Comments

  • vlnrph
    vlnrph Member Posts: 1,632
    edited June 2018

    Good for you, getting out there to find the optimal therapy for your hubby!

    Depending where you are in your treatment, perhaps the meeting in Boston next month would fit into your agenda, especially the Saturday session devoted to lobular disease. Scroll around on this topic to find the info - when you register as a patient/advocate, the fee is much less than for doctors...

    Your genetic counselor can be an excellent resource for family members, particularly if a deleterious mutation is found. My 23 yr old was just starting grad school as I began chemo and is aware of our medical history but does not require anything except normal screening. I'm more concerned about my sister's girls whose other grandma died of ovarian cancer - as you probably know, there is no good method for early detection of that monster.

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  • macmomma
    macmomma Member Posts: 62
    edited June 2018

    Thank you--and as I looked back, I realized I made a mistake. The lesion on mammo was 4-5 mm--not cm.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2018

    That is very small, what is your hormone status? Her2?

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  • macmomma
    macmomma Member Posts: 62
    edited June 2018

    Thanks for replying! Don't know the hormone status yet. I was only diagnosed 6/18/18. Hopefully in a few days. The 4-5mm was on mammogram, so it might be much bigger in real life--if I understand ILC.


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  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2018

    True, good luck.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited June 2018

    Take a look at the Lobular Breast Cancer Alliance. Some very smart patients, researchers, clinical oncologists, etc. have teamed up to address this understudied subtype of bc. Also, there is a yearly ILC symposium (actually that's where LBCA was conceived, at the first one in Pittsburgh). I don't know about a super aggressive cure doctor, but there are important considerations. I don't know where to start, especially without knowing more about your path report. Have you browsed the ILC forum here yet?

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  • macmomma
    macmomma Member Posts: 62
    edited June 2018

    Will do. I don't know much from the path report except the Nottingham score was 6. Don't have the receptors or HER2 back yet. No MRI yet since the breast was so traumatized. Thank you!

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  • dakrock
    dakrock Member Posts: 99
    edited June 2018

    I too was diagnosed with ILC.  I went in for my yearly mammogram in December and they found a suspicious area and suggested a biopsy.  I had that done and the biopsy showed that it was cancer and while in the beginning they thought I would need just a lumpectomy after the full results from the biopsy were completed it was found that it was invasive lobular carcinoma.  I then had to have a mastectomy and have been on Letrozole since December.  I had my surgery on February 23, 2018.  I only know that the levels have decreased since taking the letrozole but after a  Dexa bone scan they found I have osteoporosis in my femur bone that goes into my hip.  Now the oncologist thinks I should get treatments every six months of Zometa.   I am nervous about that and my primary care doctor suggested I see an Endocrinologist .   I am doing as much research as I can.  I say find someone who you really trust and go from there.   I trust my surgeon who found the cancer so his advice is to definitely take the Zometa because Letrozole depletes the bone also.    I wish you good luck with your diagnosis and also with your husband.  I can only say I now know that Cancer changes everything.    



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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited June 2018

    Hi again, macmomma. It is typical for ILC to come out intermediate grade, as seen in your score of 6. Classic ILC is ER+ PR+ Her2 negative, and requires anti-estrogen therapy. If it turns out otherwise, there is more to discuss. They will order Oncotype after the surgery to help with the chemo decision (unless there are a lot of involved nodes). ILC often comes out with an intermediate score, in which case I would want Mammaprint to determine luminal A vs. luminal B. I searched in vain for an ILC expert, and ended up having to become my own. I have done tons of reading on ILC so feel free to ask me questions as you go through the diagnosis and treatment process. What genetics are you waiting for?


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  • macmomma
    macmomma Member Posts: 62
    edited June 2018

    Thanks, Shetland Pony. I did get the markers back: ER 85%

    PR 69%

    HER2 1+ ( neg )

    Ki67 12%

    So, it looks like it's behaving as expected so far. Medical oncologist tomorrow, awaiting genetic test results and for this one to heal.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2018

    Well, if it turns out to be that small , you are seating pretty for having BC.

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  • macmomma
    macmomma Member Posts: 62
    edited June 2018

    Absolutely. Of course, almost no one's is as small as originally estimated, so we'll see. Praying, though.

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  • Nick87
    Nick87 Member Posts: 2
    edited July 2018

    sister has been diagnosed with stage 2 ilc had masectomy meet with the oncology team and they ordered a liver ultrasound wondering if this is a routine procedure beforw the chemo struts or if this is something to worry about?she has a bone scan chest x-ray and mri already

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2018

    The whole screening thing for our girls is so tricky. I started early because of early onset on my mom (27). That was an onerous and expensive near twenty year trail. Did very little good since it was the preventive mx that found the 1.1 cm IDC. I'm holding my breath that DD has her dad's genes re: breast cancer. So far she has done no screening. She is 28. I so hate to saddle her with the anxiety high risk screening brings. Just hoping for advances in the next few years.

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  • dakrock
    dakrock Member Posts: 99
    edited July 2018

    I don't really understand what all these numbers mean.  Can someone help me please.  I have ILC and surgery on February, 24, 2018.  Mastectomy right breast with immediate nipple sparing reconstruction.   NO node involvement but here were my numbers before surgery

    Focal asymmetry is identified, Architectural distortion entire dimension measures 2.9 cm

    ER+PR >90%/variable, focally >90%

    HER2/Negative

    KI-67 25-35% 

    Does this seem like a cancer that will spread?


    Thanks, I need all the help I can get.





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  • dakrock
    dakrock Member Posts: 99
    edited July 2018


    Post a reply


    A few seconds ago
    dakrock
    wrote:

    I don't really understand what all these numbers mean.  Can someone help me please.  I have ILC and surgery on February, 24, 2018.  Mastectomy right breast with immediate nipple sparing reconstruction.   NO node involvement but here were my numbers before surgery

    Focal asymmetry is identified, Architectural distortion entire dimension measures 2.9 cm

    ER+PR >90%/variable, focally >90%

    HER2/Negative

    KI-67 25-35% 

    Does this seem like a cancer that will spread?

    Thanks, I need all the help I can get.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited July 2018

    Hi Dakrok. Sounds like those are pre-surgery biopsy stats. Do you have the post-surgery pathology report? That is more definitive.

    [Editing to say that I am responding more fully on Dakrok's other thread instead to avoid cross-posting.]

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  • dakrock
    dakrock Member Posts: 99
    edited July 2018

    No I do not have the post surgery report.  I see my surgeon in November and I will ask for them.  I saw him 6 weeks after surgery and he said the

    25-35% was now <5%  low stage low grade  and I have to have a mammogram on left breast in 6 months and a Dexa scan and see medical oncologist which I did.   She did the DEXA scan and found out I have osteoporosis in my femur bone that goes into my hip and wants to start me on Zometa in September.  I'm nervous about the Zometa.

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  • HersheyKiss
    HersheyKiss Member Posts: 550
    edited July 2018

    Nick87, I did not have an abdominal ultrasound prior to chemo. My doctor ordered a bone scan, chest & abdominal CT, and a heart scan. The bone scan and CT were necessary because of my positive nodes. Wishing all goes well for your sister.

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