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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: Invasive Pleomorphic Lobular Carcinoma -

Topic: Invasive Pleomorphic Lobular Carcinoma -

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

Posted on: Jan 3, 2012 12:50PM

barbiecorn wrote:

I was just diagnosed with invasive pleomorphic lobular carcinoma.  Histoicytoid Variant - Grade 2 of 3.  I am waitijng for my doctor to call me - Got MRI results which said it is in many areas of left breast...and they can't rule out right breast having a malignancy.  I am opting for mx of both breasts.  I feel as though I am going to die soon as when I went on the internet, it says it is a very invasive form.  Should I get a pet scan to see if it is in any other areas of my body before I even go through a MX.  I am feeling very hopeless.   I am 65 years old and my only daughter (child) is getting married in June.  I can't believe this happened to me at this time.  Any help would be appreciated by anyone with ILC.  From some of the postings, it doesn't sound that fatal.  I am crying all the time.  Please help.

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Jan 3, 2012 01:37PM Racy wrote:

barbiecorn, I posted a reply to your other post. I'm sure your surgeon will order other scans if s/he feels they are needed after your surgery. There is no urgency about this.

Do you know if your tumour has estrogen or progesterone receptors or is HER2? If so, these are good things as there are treatments that can help a lot with these types of tumours.

Keep in touch.

Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Jan 3, 2012 02:43PM mary625 wrote:

I just wanted to reach out and send a virtual HUG. There is probably a lot more information that is to come in the next days or weeks that will help you to understand your diagnosis more clearly.  Knowing what your treatment plan is and that it's going to work for you is so helpful.  I do not have pleomorphic ILC (at least as far as I know), but I do have ILC.  I'm finishing chemo this week.  Chemo has worked well on my tumor (which is/was multi-focal) despite it being ILC.  I will be having a BMX in February followed by RADS.  As said above, please do keep in touch.  There is every reason to have hope.

Dx 8/29/2011, ILC, 1cm, Stage IIIC, Grade 2, 10/16 nodes, ER+/PR+, HER2- Hormonal Therapy 03/11/2012 Femara (chemical name: letrozole, class: aromatase inhibitor) Surgery 02/05/2012 Mastectomy of one or both breasts: Mastectomy of my left breast, Mastectomy of my right breast; Lymph node removal (also called dissection): Underarm (axillary) lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side Surgery 09/23/2014 Reconstruction of my left breast: DIEP flap; Reconstruction of my right breast: DIEP flap Radiation Therapy 03/12/2012 Chemotherapy 09/25/2011 AC + T (Taxol): Adriamycin and Cytoxan, plus Taxol
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Jan 3, 2012 04:27PM IllinoisNancy wrote:

Hi,

I was dx with pleomorphic ILC in October of 2006.  I had a local recurrence in October 2010.  I feel great and know a lot of other ladies who are living and enjoying life that have this same kind of cancer.  Pleomorphic doesn't make it worse... it just means the cells are different than regular ones.  I not only feel great but am hoping for a cure soon.  Hang in there and take one day at a time. 

Nancy

OncotypeDX was 9, Pleomorphic ILC, Breast cancer twice, 10/06 and 10/10,
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Jan 3, 2012 04:46PM nash wrote:

barbiecorn, a lot of the info regarding PILC on the internet is old. When I was first diagnosed,  I was scared reading the studies too, but none of my docs were concerned about the pleomorphic aspect of my tumor at all.

One onc said that it's not clear from the research whether PILC is more aggressive b/c of the pleomorphism of the cells or if it's the HER2+ PILC cases that are that are the issue. Another onc told me that they focus on the ER/PR/HER2 status much more than the subtype (PILC, ILC, IDC) in regards to treatment and prognosis. And my rad onc said she feels PILC is roughly the equlivalent of a grade 3 IDC, but no worse.

I had a bone scan and chest CT when I was first diagnosed, b/c that was the standard of care for all bc cases at my cancer center. I had a PET/CT to followup on a spot on my liver that turned out to be nothing. Ask your onc about baseline scans, although in my experience it is hard to get the insurance to pay for a PET if one has negative nodes. A bone scan and chest CT shouldn't be a problem to get.

I was 38 at diagnosis and am 4 years out now.

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18, Local recurrence April 2015 Dx 4/24/2015, ILC, Left, 1cm, Stage IIA, Grade 2 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 07/19/2007 Lumpectomy in one or both breasts: Lumpectomy in my left breast; Lymph node removal (also called dissection): Sentinel lymph node removal (also called dissection) Radiation Therapy Whole-breast radiation Chemotherapy CAF: Cytoxan, Adriamycin, and fluorouracil (different doses than FAC) Hormonal Therapy Tamoxifen in pill form (brand names: Nolvadex, Apo-Tamox, Tamofen, Tamone, class: selective estrogen receptor modulator (SERM))
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Jan 3, 2012 05:05PM antonia1 wrote:

Barbiecorn, I was 62 at my diagnosis, so very close to your age. My  pathology report states that I have/had both pleomorthic and classic ILC, as well as pleomorthic and classic in LCIC, grade between intermediate and high, stage 3A. Since the biopsy already confirmed cancer cells in my nodes, in order to rule out distant metastasis, prior to surgery,  my OS ordered an MRI of both breasts and a PET scan. Then I had bmx (my decision) followed by chemo: 4xAC and 12 x weekly Taxols +Herceptins with Herceptin continuing for the year. After  taxol, I had radiation and now I am on Arimidex for five years and still have a few Herceptin sessions left.

At no time was I told that my situation was hopeless. So, a year and 3 months post diagnosis, I am still here. Just had a brain MRI and a bone scan -- both clear, and my oncologist assures me that I am cured and should go on with my life.  Of cause, I don't consider myself completely cured just yet, but as far as I know, the beast is  being kept away with all that treatment  and I am recovering nicely.

Just take one step at the time. Good luck.

Dx 9/15/2010, ILC, 4cm, Stage IIIA, Grade 3, 4/16 nodes, ER+/PR+, HER2+
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Jan 4, 2012 05:51AM barbiecorn wrote:

I cannot thank you all for your responses.   Trully yesterday I felt death at my front door....I am so freightened by this..there is no cancer in my family and my only child (daughter) is getting married in June...I feel as though I ruined her wedding...she is so upset for me and I am so upset for her....it sounds like it may not be a death sentence which is what I was feeling....according to the MRI the lymp nodes are negative.  Any other information from anyone else is so appreciated.  I will be getting a MX of both breasts as this is in both....I pray for all of us....God Bless!!!

Dx 12/26/2011, 2cm, Stage IIA, Grade 2, 0/0 nodes
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Jan 4, 2012 05:54AM barbiecorn wrote:

Did you have a MX also? 

Dx 12/26/2011, 2cm, Stage IIA, Grade 2, 0/0 nodes
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Jan 6, 2012 06:43PM Galsal wrote:

have just been dx'd with this also, last month.

Dx 12/14/2011, ILC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 03/09/2012 Hormonal Therapy 10/05/2012 Arimidex (chemical name: anastrozole, class: aromatase inhibitor) Hormonal Therapy 04/15/2013 Aromasin (chemical name: exemestane, class: aromatase inhibitor) Hormonal Therapy 12/12/2012 Femara (chemical name: letrozole, class: aromatase inhibitor) Surgery 02/09/2012 Mastectomy of one or both breasts: Mastectomy of my left breast; Prophylactic (also called preventive) mastectomy of one or both breasts : Prophylactic (also called preventive) mastectomy of my right breast Surgery 07/14/2013 Reconstruction of my left breast; Reconstruction of my right breast Surgery 07/08/2012 Reconstruction of my left breast: DIEP flap; Reconstruction of my right breast: DIEP flap Surgery 08/15/2013 Reconstruction of my right breast Surgery 02/12/2014 Reconstruction of my left breast: Tissue expander placement; Reconstruction of my right breast: Tissue expander placement Surgery 06/23/2014 Reconstruction of my right breast: Tissue expander placement Surgery 10/22/2014 Reconstruction of my left breast; Reconstruction of my right breast
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Jan 8, 2012 03:44AM Momine wrote:

Sciencetest, how do you use cancermath? I went to the site, and I can't see any interface, just info.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Hormonal Therapy 03/31/2012 Femara (chemical name: letrozole, class: aromatase inhibitor) Surgery 09/12/2011 Mastectomy of one or both breasts: Mastectomy of my left breast, Mastectomy of my right breast Surgery 03/07/2012 Prophylactic (also called preventive) removal of the ovaries Radiation Therapy 01/08/2012 Chemotherapy 06/19/2011 Ellence (chemical name: epirubicin), Cytoxan (chemical name: cyclophosphamide), Fluorouracil (also called 5-fluorouracil or 5-FU; brand name: Adrucil) , Taxotere (chemical name: docetaxel)
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Feb 26, 2012 05:48PM javmo3 wrote:

barbiecorn

I just read your post and want to send you a hug along with reassurance that you are no different than anyone else...a diagnosis does not mean anything when it comes to your life expectancy. NO ONE knows when their time on earth is ending!

Live each day as you always have, full of life and hope with all the plans for a happy future. You have something awesome to look forward to, your daughter's wedding in June. Make plans and focus on the event will a new perspective of appreciation for the wonderful things life has to offer!

I too have P ILC being diagnosed July '08. I had a BMx, 4AC, 4Taxotere, 36 Rads, Tamoxifen and now Femara forever. Even though it is sometimes hard to forget, I try to be positive and reassure myself by remembering what I said above..."No one knows their fate, why should I be any different!"

I love to research on the computer because I am a nurse and I just like medical information, but I take away only the information that is positive and proven not just hearsay!

Take care and best wishes. Congrats to the happy couple embarking on a new adventure in life!

Dx 7/21/2008, ILC, 3cm, Stage IIIA, Grade 3, 4/21 nodes, ER+/PR+, HER2- Surgery 09/07/2008 Mastectomy of one or both breasts: Mastectomy of my left breast; Prophylactic (also called preventive) mastectomy of one or both breasts : Prophylactic (also called preventive) mastectomy of my right breast ; Reconstruction of my left breast: Free TRAM flap; Reconstruction of my right breast: Free TRAM flap
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Jul 30, 2012 05:19PM Cindi74 wrote:


Was diagnosed  two weeks ago.  Appointment with Surgeon, Oncologist, Radiology Oncologist and MRI so far.

 GP said Stage 2 from biopsy.  Surgeon said Stage 1, Oncologist said Stage 2, Radiology Oncologist Said Stage 1.  None had seen all MRI results.  Surgery next week. Surgeon says Lumpectomy OK. 

Feel great.  Look great. Mother lived almost to 90.  This was not on my radar.  Am almost 75.  Lots of support and no worry about insurance.  Worry more about pain and suffering than death.  Internet research scary.  Can't help but look.  Watched 2  lumpectomy surgeries on youtube.  Used tranqualizier for sonogram,  biopsy, and MRI, but Garrison Keillor monologues through earphones help me sleep happy.

Any out there with this rare form, please share. 

Hugs to you from me.  As one grandson said.  You can do this,  And I can.

Dx 7/12/2012, ILC, 3cm, Stage II, Grade 3, 2/7 nodes, ER+/PR-, HER2- Surgery 08/07/2012 Lumpectomy in one or both breasts: Lumpectomy in my left breast; Lymph node removal (also called dissection): Sentinel lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side Radiation Therapy Chemotherapy 09/11/2012 AC: Adriamycin and Cytoxan Chemotherapy 12/04/2012 AC + T (Taxol): Adriamycin and Cytoxan, plus Taxol
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Jul 30, 2012 07:35PM mary625 wrote:

Dear Cindi: I have ILC and I know the words "quite pleomorphic" were in my path report, but I think related to my LCIS. Anyway, I want to reach out to you with support. It seems that you have a great attitude and a supportive family. This will be a blessing. I would not watch surgeries on YouTube though. I took a Valium on the morning of my surgery, with their approval, and I was very relaxed. It was a piece of cake, and mine was a bilateral mastectomy. I don't think you will have a lot of pain and suffering. You might want to ask around the forums where a lot more women have lumpectomies than mastectomies like here in the ILC forum.

Dx 8/29/2011, ILC, 1cm, Stage IIIC, Grade 2, 10/16 nodes, ER+/PR+, HER2- Hormonal Therapy 03/11/2012 Femara (chemical name: letrozole, class: aromatase inhibitor) Surgery 02/05/2012 Mastectomy of one or both breasts: Mastectomy of my left breast, Mastectomy of my right breast; Lymph node removal (also called dissection): Underarm (axillary) lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side Surgery 09/23/2014 Reconstruction of my left breast: DIEP flap; Reconstruction of my right breast: DIEP flap Radiation Therapy 03/12/2012 Chemotherapy 09/25/2011 AC + T (Taxol): Adriamycin and Cytoxan, plus Taxol
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Jul 31, 2012 03:03AM , edited Jul 31, 2012 03:06AM by Racy

Hi Cindi, my diagnosis was pleomorphic ILC, not that I really understand what that means. They treat it in the same way as more common forms of BC.

Don't worry about the lumpectomy. I had the procedure under general anaesthesia and the recovery was painless. I did have to have a second op to get 'clean margins', which is quite common, so don't be disheartened if that happens to you. You will also have a sentinel node biopsy. I believe there are different techniques for this but mine was done with the lumpectomy and I was unconscious. The op only takes about 45 minutes.

Ask your surgeon to explain everything and answer any questions.

You will be fine. Let us know how you get on and we can share our experiences with other treatments, if recommended for you.

There is info on this site under the treatments menu about treatments for older patients, such as pros and cons of radiation. I suggest you look at that info.

Good luck.

Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Aug 15, 2012 07:43PM IllinoisNancy wrote:

Hi,

I've had Invasive Pleomorphic Lobular Carcinoma since 2006 and I not only feel great.....I am enjoying life to the fullest. My doctors told me that Pleomorphic is not a bad diagnosis, just means that the cells are different.  I think of breast cancer as a wake up call to enjoy every day.  

Take care,

Nancy 

OncotypeDX was 9, Pleomorphic ILC, Breast cancer twice, 10/06 and 10/10,
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Aug 15, 2012 07:57PM , edited Aug 15, 2012 07:58PM by BirdyRobin

Illinois, I like the pic you look great. I have ILC I do not know about the Pleomorphic, it sounds, well scary. I hope that everything goes well and that you have some peace of mind soon. (((hugs))). Robin

Dx 4/15/2011, ILC, 6cm+, Stage IIIB, Grade 3, 4/10 nodes, ER+/PR+, HER2- Hormonal Therapy 06/19/2012 Femara (chemical name: letrozole, class: aromatase inhibitor) Surgery 08/19/2012 Reconstruction of my left breast: DIEP flap; Reconstruction of my right breast: DIEP flap Surgery 04/15/2011 Mastectomy of one or both breasts: Mastectomy of my left breast, Mastectomy of my right breast; Lymph node removal (also called dissection): Sentinel lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side Radiation Therapy 10/31/2011 Chemotherapy 05/31/2011 Cytoxan (chemical name: cyclophosphamide), Taxol (chemical name: paclitaxel)
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Sep 8, 2012 08:18AM Cindi74 wrote:

Somehow I lost this thread.  Had lump.  no pbm except anoying drain for a few days. 2 of 7 nodes involved--one was beyond the node.  CAT, Bone (nothing found), Echocardigram, Port placed.  Start 4 A/C at three, then 12 Taxol, then Rads.  Stuck here 9 months.  Great support from family and friends.  Bought wig.  Don't mind losing hair.  The wig will look better.  Still scared of chemo, but if I get through first two days, will probably be OK.  My surgeon said to use the anxiety and pain medicine as needed, so wish me luck.  Thanks for the encouragement.  When I read about the young ones with small children, job, and poor or no insurance, I know how terribly lucky I am to have reached 75 with great health.  Hugs to all.

Dx 7/12/2012, ILC, 3cm, Stage II, Grade 3, 2/7 nodes, ER+/PR-, HER2- Surgery 08/07/2012 Lumpectomy in one or both breasts: Lumpectomy in my left breast; Lymph node removal (also called dissection): Sentinel lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my left side Radiation Therapy Chemotherapy 09/11/2012 AC: Adriamycin and Cytoxan Chemotherapy 12/04/2012 AC + T (Taxol): Adriamycin and Cytoxan, plus Taxol