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Pleomorphic Invasive Lobular Carcinoma

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  • mikamika
    mikamika Member Posts: 242
    edited December 2019
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    It's interesting. I'll ask my oncologist next time.

    Thank you!

  • cathmg45
    cathmg45 Member Posts: 5
    edited December 2019
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    Hi gwydiana,

    Yes, I share that rare designation with you and others on this thread. My onc said that the pleomorphic aspect meant it was potentially more aggressive and likely to recur early. He recommended chemo no what the oncotype test would say, so I did 4 rounds of CT. Luckily, as you can see from my diagnosis date, that was quite a few years ago!

    Happy New Year,

    Catherine

  • mac5
    mac5 Member Posts: 85
    edited December 2019
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    Hello to all...

    After reading these posts I re-read my Pathology Report.

    I found this article that might be of interest.

    http://surgpathcriteria.stanford.edu/breast/inflobcabr/grading.html

    Happy Best Year To Come

  • wslno66
    wslno66 Member Posts: 3
    edited January 2020
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    I am new to the forum. I am glad to see this topic. I completed treatment just over a year ago. I knew PLIC was uncommon, but didn't realize just how rare until I started researching side effects of hormonal therapies.

    Most of the studies I have been able to find are retroactive data inspection. After reading this particular forum, I see that most of the participants had much smaller tumors and a lower grade than I did at diagnosis. I am hopeful for a long future, but most of the information I have been able to find indicates it is an aggressive form of BC.

    I'm wondering if anyone else is taking, or has taken Triptorelin injections as part of their hormonal treatment?

  • Moag
    Moag Member Posts: 2
    edited January 2020
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    Hi, I did also have a pleomorphic ilc. It was grade 2, and I do think there might be grades of «pleomorphism». My KI67 was 31, so when I learned I was pleo it made finally sense, since I could not grasp why so many with ilc had such low KI67.

    I did 4 rounds of EC90 and had radiation due to one lymph node unfortunately positive. They first thought I did not have cancer there, but was discovered after the operation pathology. Now with the pleo this also make more sense. It all is a shocking journey, and the pleo also was a shock, but now I have investigated and asked all my doctors, they all say that the most important is the well-known factors as hormon receptors, grade, size of tumor and lymph node involvement.

    My doctors seems confident I will be an old lady, and did not even mention the pleomorphic fact, so I do believe it really is not a prognostic factor in it self.

    Good to not feel all alone with this weird breast cancer, but sure wish nobody would be in this group.

  • jrnj
    jrnj Member Posts: 407
    edited January 2020
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    swino66 and Moag, My BS, who I later dumped, totally ignored the pleomorphic factor. I went for three opinions on chemo. Two ignored the pleomorphic factor and said no chemo. The third, MSK (Sloan), took it into consideration, along with other pathology factors and recommended chemo. I also argued with my breast surgeon about being pleomorphic, she didn't think I was, and Sloan confirmed I was. She didn't read my pathology report correctly. I've never heard of Triptorelin. It sounds like an equivalent to Lupron?, which Sloan recommended to suppress the ovaries. I'm planning on getting them removed, I don't want to be on another medication with side effects that might fail. My ovaries are really strong at 54 lol. Two periods on chemo so far. Looks like you've both had the max treatment, so you've done just about all you can to fight it. I had to fight for treatment, My Onco was low/gray area and my KI67 was borderline. So I didn't have the stronger chemo. Good luck!

  • HayleyLorene
    HayleyLorene Member Posts: 3
    edited January 2020
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    Hi All,

    I was diagnosed with ILC >30% pleomorphic in June 2018. My tumour was 12cm and 16/16 lymph nodes were positive with extensive extracapsular and extension. I was 34 at diagnosis.

    I still haven't been able to find anyone with a similar diagnosis at a young age and it scares the hell out of me. Does anyone make it past 5 years?

  • jrnj
    jrnj Member Posts: 407
    edited January 2020
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    of course. Check ilc long term survivor thread. Also another thread on stage iii survivors I forget where. What is your surgery and treatment?

  • Sandiegohoneybee
    Sandiegohoneybee Member Posts: 6
    edited January 2020
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    I’m the only one here that’s classic with ER and her2+. My estimate is bout 1500 people in US have same thing. 18 grueling herceptin pergeta infusions. Chemo rads etc. did you get second opinion on biopsy pathology. I had three different hospitals look to be sure. I was diagnosed stage III although I had mammograms all my life and I had three mammograms and five ultrasounds and denied a biopsy within the first eight months of 2018 I fired all of those doctors and I hired an attorney.venting.

  • Sandiegohoneybee
    Sandiegohoneybee Member Posts: 6
    edited January 2020
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    I’m in Clinton. Where r u?

  • jrnj
    jrnj Member Posts: 407
    edited February 2020
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    Sandie, so sorry, ILC is sneaky and hard to detect. That is why I pushed for BMx, and chemo. I had my first 3d mammogram this year, and I think it was there before and not detected, and I'm mad I didn't know about 3d sooner, just because my facility didn't have it sooner, and I never got any information from my gyn. The baby Dr. I saw in July offered me hormone replacement therapy. I'm like, no thanks, right before dx. Every year I went, the dr or nurse I saw the year before quit, need to find a new gyn, but too late now. I also found out a friend of mine gets MRIs every few years, just for screening, because she has dense breasts. Why is proper screening so hard to get for everyone! I'm in Jackson. Dated someone in Clinton for many years in my 20s.

  • wslno66
    wslno66 Member Posts: 3
    edited April 2020
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    So my med onco took me off the Triptoelin and I am just on Anastrizole now. My pathological stage is IIIc. That is pretty scary for me as I understand this is considered late stage - just before metastasis. My medical onco that doesn’t believe in giving predictions for false hope or negative thoughts- basically said I am 50/50 for a five year survival rate. I’m trying not to be terrified, but there is some grimness In the numbers. I get blood work every 3 months, but no scans. Is this kind of follow up typical? Trying to just move forward with life and find joy in each day. But, that diagnosis is pretty daunting. I’m about 15 months from my initial treat completion. A little nervous about the IIIC coming down. Anyone know people that make long term progress??

  • BevJen
    BevJen Member Posts: 2,341
    edited April 2020
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    wslno66,

    I was IIIc, also ILC, originally diagnosed in 2003. In 2006, I had a single site metastasis and went on letrozole. No further issues until 2019 when I developed additional mets. As far as I know, I'm still here (so that's 16 1/2 years from original surgery/diagnosis.) I've just lived my life and didn't focus on my illness (I'm pretty good at compartmentalizing.).

    BUT I would say that I wouldn't be happy if my MO had told me that either in 2003 or in 2006 -- I might be searching for another oncologist. I understand giving you stats, but we can all look those up. What your MO should be giving you is HOPE. He/she has no idea how you will do, and stats, which focus on cases in prior years, are somewhat deceiving considering how many drugs have emerged during the past 5 or so years that keep us keeping on.

    Good luck. I was on letrozole from 2006=2019 -- so may you get a long run on anastrozole!


  • wslno66
    wslno66 Member Posts: 3
    edited April 2020
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    Thank you so much for telling me your story. It helps! I am living life and can compartmentalize well.

    Thank you again for the support

  • corduroy mouse
    corduroy mouse Member Posts: 22
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    Pleomorphic means that the cell nuclei/nucleus is/are VERY different, larger than the normal cells in the breast. The pleomorphic cells tend to have a higher mitotic rate (speed at which the cells duplicate themselves), which is also what makes this a more aggressive type of ILC. I'm a retired nurse turned medical transcriptionist and type pathology results on cancers all day long. Never in my wildest imagination did I think I would have IPLC. Facing chemo next week, 3 weeks post single mx with ER+/PR-/Her-2- and 4/10 positive nodes and extension outside the lymph nodes. I'm glad to see y'all have been able to move on, and I'm hoping to be able to do so myself. Trying to stay positive, finding that my best strength has been my sense of humor. Stay strong sisters!

  • lillyishere
    lillyishere Member Posts: 773
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    cordoroy mouse, I am sorry to see you here. Other than classic ILC, I had large amounts of Pleomorphic Lobular Carcinoma in situ. It was found after the DMX pathology. I am also ER+/PR-, Her-2 -. I was told that PR-, makes cancer more aggressive type. Sigh. I didn't have chemo and I am taking aromatase inhibitors.

    I wish you good luck. Chemo will clean it all and you're getting a second layer of safety with AI.

    Note: BevJen passed away last year at age 70.

  • jrnj
    jrnj Member Posts: 407
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    cordoroy mouse, I went for several opinions. Some ignored pleomorphic factor some didn’t. chemo is temporary, you’ll get through it. Good luck.

  • corduroy mouse
    corduroy mouse Member Posts: 22
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    I really am glad I found this group. Looks like a troupe of fighters to me! What is oddest to me is that no one considered brain metastasis at such an early point in my diagonsis treatment. 5/25, stage 3A, 7/19 brain mets with 5 foci (a couple of which are pretty large). What now is clear to me is that no screening typically done for breast cancer progression routinely includes a surveillance screening for brain mets, since the brain is simply too metabolically active to give meaningful info on something like a PET scan. No amount of chemo that I'm aware of will address brain mets, since these agents do not cross the blood-brain barrier (handy little thing engineered into us from our conception to prevent the spread of infection to the brain, etc.). I have had chronic daily migraines since the age of 28 (1/2 part head injuries from falling off horses, car wrecks, etc., 1/2 due to being a type A OCD kind of gal..lol). So, even when I had the headache in the ER, I didn't feel it probably warranted a head CT. Good thing the ER doc was on the ball. The follow-up MRI for the area of suspicious encephalomalacia pinned down the diagnosis. Have my second TrueBeam radiosurgery treatment today. No worries….no smoke from my ears, smell of burning hair (well, lost that after second round of A/C anyway), and no hole opening up the ceiling to let in a huge lightning bolt (thinking Young Frankenstein here…lol). H/O quickly moved from the idea of chemo to palliative radiation and aromatase inhibitor. If balls were dropped anywhere along the way, I have to say I was a pretty good goalie (unfortunately for the opposing side), constantly throwing up roadblocks and excuses to avoid going for tests (costs, work schedule, other commitments, etc. Currently on short-term disability, but realistic outcome is that I won't be returning to work. Goals for now are adequate pain control (yes, that means stuff like MS Contin, but it offers good relief without making me so out of it I can't function or enjoy life), getting brain swelling under control (I can sport the Elven Warrior look, but not hydrocephalus….hahaha), being as independent as I damn well like (with limitations of course like having others drive). My approach….I have to find a wall to face, imagine where the next hand or foot hold is going to be, and use a leap of faith to gain purchase. From there, the climb is mine, and I find some joy in just doing it. It can be a scary journey, but if I look back too long, I'm afraid I'll miss what's in front of me. I don't see anyone else on here with brain mets, so I would especially love to hear from anyone else with a similar history.

    Thanks for your warm and welcome arms, and I am looking forward to getting to know you all!

    Corduroy Mouse, Elven Warrior - Fight alongside me

  • jrnj
    jrnj Member Posts: 407
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    cordoroy mouse, I am sorry to hear about your new diagnosis. You sound like my type of gal type A OCD, soccer player, rough and tumble, but you have a much better sense of humor than me and more optimism. I also have crippling anxiety and depression. I just had my first ever brain mri and it was normal. I don’t think this thread is very active as pleomorphic ILC is not that common. I think there are other threads about brain mets. I hope your radiation goes smoothly and zaps all that damn cancer. Judy

  • corduroy mouse
    corduroy mouse Member Posts: 22
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    Thanks Judy! Second targeted TrueBeam went off without a hitch. Like you, suffer from anxiety and depression. My nursing background is in psychiatric nursing as well, so I feel that I have the tools and toys…just need others in my sandbox…lol. I'll take your advice and look around. I was sorry to hear about Bevjen. We each get a shot at only today, so I'm going to make all my todays the best I can. Two more days until my 49th wedding anniversary, and come hell or high water, I'm getting a Dominos Pacific Veggie pizza delivered (hate driving, so it's the perfect solution!).

  • jrnj
    jrnj Member Posts: 407
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    wow impressive resume, glad treatments are going well!! pizza sounds yummy I’ll have to try it.

  • lovelau
    lovelau Member Posts: 41
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    hi, after bc stage1b I got bilateral mastectomy and radiation was on ais for 3 years. Drs stopped it cause they thought the depression was from ais. I am still in remission as far as I know. It’s 5 years now, the dr said I have ocd and gave me luvox, I have bad anxiety and depression. Im sick of feeling like this. They tried me on 20 different meds. All side effects. He gave me klonapin for anxiety, I don’t like it cause it does calm me down but makes me sleepy. I am trying to taper off got down to .125 1 or 2 times a day, took it when I wake up, dr said take it at bedtime and I did had deep sleep but woke up with worst anxiety ever. I don’t know what I do. Has anyone had situation like my ne and successfully got better got rid of anxiety? Read books took classes Bible study, nothing seems to help except watching dramas with subtitles, and that’s not a way to live your life. Thanks the dr says we are doing experiments but I’m sick of doing experiments. I just want to get better. Thank you and bless you