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Topic: Younger women with ILC?

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

Posted on: Apr 21, 2011 07:46PM

LauraK wrote:

Hi everybody,

I just got diagnosed with ILC. I am only 31 and was just wondering if there are any other people this young with the same diagnosis. I understood ILC was much more common in older age groups..

Regards, Laura

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Apr 22, 2011 09:58AM nash wrote:

I was 38 at diagnosis and was also surprised, since it's more common in post-meno women.

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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Apr 22, 2011 10:09AM sgreenarch wrote:

Hi. I was 49 at dx and premnopausal. Not sure if this is still considered young:)!

Dx 7/20/2010, ILC, 2cm, Stage IB, 0/3 nodes, ER+/PR+, HER2-
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Apr 22, 2011 10:37AM nowords wrote:

I was 50 and not in menopause. I was told that the 10 cm plus tumor (that 10 mammograms missed) was growing for at least 10 years.

Dx 4/6/2009, ILC, 6cm+, Stage IIIA, Grade 1, 7/22 nodes, ER+/PR+, HER2-
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Apr 22, 2011 01:05PM roseamy wrote:

Hi,

I am lobular and ductal I was 40 at dx ( misdx at 36).

Dx 9/30/2008, ILC, 5cm, Stage IIIB, Grade 2, 0/4 nodes, ER+/PR+, HER2+
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Apr 23, 2011 08:53AM LauraK wrote:

Thank you for your answers! It seems that I am not completely alone. (Although still the youngest I have been able to find:) )

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Apr 23, 2011 01:05PM sweetbean wrote:

I'm 37 - not quite as young as you, though!  Lobular and ductal.  Blech!

Dx 11/18/2010, ILC, 5cm, Stage IIIA, Grade 2, 2/15 nodes, ER+/PR+, HER2+ (FISH)
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Apr 23, 2011 05:19PM - edited Apr 23, 2013 02:10AM by ---

=

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Apr 23, 2011 05:20PM Jalsmama55 wrote:

I'm 37 and pleomorphic lobular with ductal features, you're definitely not alone doll :)

 PLEOMORPHIC MULTIFOCAL, MULTICENTRIC ILC.  BMX 9/14/10, ALND to right. Chemo (TC) x4, 38 Rads, tamoxifen and zoladex Surgery 7/29/2010 Lumpectomy: Right Dx 8/4/2010, LCIS/ILC/IDC, 2cm, Stage IIB, Grade 2, 2/16 nodes, ER+/PR+, HER2- (FISH) Surgery 9/13/2010 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 10/19/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/14/2011 Breast, Lymph nodes Hormonal Therapy 2/20/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/14/2013 Reconstruction (right): DIEP flap Surgery 3/26/2014 Reconstruction (left): Tissue expander placement Surgery 10/15/2014 Reconstruction (left) Surgery 2/18/2015 Prophylactic ovary removal Hormonal Therapy Femara (letrozole)
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Apr 27, 2011 09:12PM elmcity69 wrote:

39 at dx, ILC....

Dx 9/24/2009, ILC, 2cm, Stage IIIC, Grade 3, 15/19 nodes, ER+/PR-, HER2+
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Apr 30, 2011 04:31PM Nicoleb wrote:

I was 36, almost 37, when dx'd w ith ILC. I guess that puts me in the "younger" category. :)

Dx 2/1/2011, ILC, 2cm, Stage IIB, Grade 3, 1/7 nodes, ER+/PR+, HER2-
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Apr 30, 2011 04:35PM cathmg wrote:

Hi Laura,

I was 43 and premen when diagnosed...4 cm tumor that I'm sure had been growing for awhile... 

Dx 7/17/2008, ILC, 4cm, Stage IIA, Grade 2, 0/9 nodes, ER+/PR+, HER2-
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Apr 30, 2011 09:29PM JennyB wrote:

I was 39...

hugs,

Jenny

Dx 3/18/2010, ILC, Left, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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May 1, 2011 03:19PM MandaLynn wrote:

I was 44 at diagnosis. It's been 2.5 yrs now. Went for bilateral mx, have had major doubts about that, but they're gone now, so I'm moving on. Going to have diep in nov (I've had expanders in this whole time- must be a record). I'm on the hormone shots (zoladex). Getting tiredoif the monthly visit. I forget every time and have to scramble to get the appt (shots are best every 28 days). I'm holding offln ooph because my hot flashes are minimal now and I've got this belief that they'll be worse without my ovaries (although the shots shut them down anyway). Does anyone know if it's different? I think I'll list that question under hormonal board.

Believe it or not, even after the cancer dx, my biggest problem right now is losing weight. You know- all that info that says under 25 BMI is least reoccurrence. Oh, sh*t.

Amanda

Amanda Dx 10/20/2008, ILC, 3cm, Stage IIIA, Grade 2, 4/17 nodes, ER+/PR+, HER2-
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Jul 10, 2011 04:46PM CorinneM1 wrote:

I am 39 and was diagnosed in May of this year.  I was also told that our ILC is more common in women in their 60s and that I was/am considered young for ILC.

I was also told that I probably had it at least 3 years.  I am grateful and thankful for the latest technology and treatments as early detection saved my life.  They were able to find 3 tumors, grade 1 stage 1, despite ILC being a "sneaky" cancer.

CorinneM1 ILC Grade 1 Stage 1 ER/PR+ HER neg. BMX, no chemo, no rads, tamoxifen for 5+ years
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Jul 10, 2011 11:02PM JennyB wrote:

I was 38 when I felt the lump; 39 when dxed.

jenny

Dx 3/18/2010, ILC, Left, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jul 11, 2011 02:19PM ValerieF wrote:

I was 39, and I have a friend who was 28.  It is unusual--on the Young Survival Coalition website, only about 3.5% of the young women diagnosed with breast cancer had ILC.

Valerie, age 41, dx with ILC 7/06 Dx 6/17/2006, ILC, 4cm, Stage IIB, Grade 2, 3/11 nodes, ER+/PR+, HER2-
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Jul 11, 2011 02:20PM elmcity69 wrote:

39 ....

Dx 9/24/2009, ILC, 2cm, Stage IIIC, Grade 3, 15/19 nodes, ER+/PR-, HER2+
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Jul 11, 2011 02:47PM cd1234 wrote:

I was 37 when I was diagnosed.

Dx 1/15/2009, ILC, 1cm, Stage IIA, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Jul 12, 2011 05:32PM - edited Jul 12, 2011 05:32PM by sweetbean

This Post was deleted by sweetbean.
Dx 11/18/2010, ILC, 5cm, Stage IIIA, Grade 2, 2/15 nodes, ER+/PR+, HER2+ (FISH)
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Aug 26, 2011 02:19PM ValerieF wrote:


Does anyone else here have a family history of breast cancer?  My mother, maternal aunt and maternal great-grandmother had premenopausal breast cancer (oh--and me!)  I don't know if any of them had ILC since I think it was before they were testing for the different types and no records are left any more.  My aunt is still living and says that her tumor was ER/PR-, which doesn't sound like ILC. 
Valerie, age 41, dx with ILC 7/06 Dx 6/17/2006, ILC, 4cm, Stage IIB, Grade 2, 3/11 nodes, ER+/PR+, HER2-
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Aug 26, 2011 03:27PM snicklefritz wrote:

I was 44.  Don't know of any family history.  I did go to get tested for the gene which was negative.  I did this for my daughter so she could use as much info from me to help her in future.

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Aug 26, 2011 08:29PM CorinneM1 wrote:

Valerie, did you get tested with your family history?

CorinneM1 ILC Grade 1 Stage 1 ER/PR+ HER neg. BMX, no chemo, no rads, tamoxifen for 5+ years
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Aug 27, 2011 08:22AM Robyn_S wrote:

I was premenopausal and diagnosed at 46 with a 8.7cm tumor. As it was a grade 1 and slow growing it could have been there for 10 years. I have finished chemo and will have 25 rads before 5 years of tamoxifen. The gift that just keeps on giving!!

Age 46 @ Dx, BMX, FEC/T, Rads, Tamoxifen, Femara, DIEP 2012 ( the works!!) Dx 3/8/2011, ILC, 6cm+, Stage IIIA, Grade 1, 1/5 nodes, ER+/PR+, HER2-
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Aug 27, 2011 08:28AM odie16 wrote:

4o at dx 2-3 cm ..no family hx....premenopausal .

Dx 6/27/2011, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Sep 2, 2011 11:53AM CML0310 wrote:

I was 41 at diagnosis- didn't feel anything mamogram/ultrasound detected it no family history

Dx 3/2011, ILC, 1cm, Stage IIA, Grade 2, 1/12 nodes, ER+/PR+, HER2-
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Sep 2, 2011 01:30PM CynLyn wrote:

Yes, and I was 28 when I was diagnosed. I am now 29 years old.  Have a family history of breast cancer and test positive for BRAC1 gene.  Had a right modified mesectomy, 5+ cm tumor.  Dr's say that I had the tumor for maybe 7 years! Went through very aggressive chemo and 31 radiation treatments.  I just finished treatments in late July, I am having long term side effects from chemo, neuropathy in both hands and both feet, crushing bone pain.  I hope it gets better with time.  I really hope that I didn't pass this gene to  my daughter, she is only 23 months right now. :(

**Cyn** Dx 10/15/2010, ILC, 5cm, Stage IIB, Grade 2, 0/5 nodes, ER-/PR-, HER2- Surgery 10/21/2010 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 12/15/2010 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 6/5/2011 Breast Dx 1/31/2014, LCIS, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Surgery 2/5/2014 Lymph node removal: Left, Sentinel; Mastectomy: Left
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Sep 4, 2011 10:39PM Katarina wrote:

49....

Dx 3/23/2011, ILC, 6cm+, Stage IIIB, Grade 3, 3/13 nodes, ER+/PR+, HER2+ (FISH)
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Sep 4, 2011 11:40PM Seashellie wrote:

46 for me. Post-menopausal (early menopause!) I was on bioidentical hormones that made my breasts sensitive and prompted me to do a really good self exam where I found the lump just before my yearly mammogram - and it wasn't seen on the mammo. but the ultrasound picked it up. Grandma had BC but I tested negative for BRCA.

BMX 6/30/11, DIEP 11/28/11, No chemo/rads, Femara Dx 6/16/2011, ILC, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Sep 5, 2011 10:22AM mary625 wrote:

49 for me....  Pre-menopausal. 

Dx 8/29/2011, ILC, 1cm, Stage IIIC, Grade 2, 10/16 nodes, ER+/PR+, HER2- Chemotherapy 9/26/2011 AC + T (Taxol) Surgery 2/6/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Hormonal Therapy 3/12/2012 Femara (letrozole) Radiation Therapy 3/13/2012 Surgery 9/24/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Sep 9, 2011 09:19PM Mela3 wrote:

Hi ladies, I was 47 at Dx-I was Premenapausal but haven't had a period since the third treatment with AC-in October 2010. Guess that's that. My onc said when you're in your upper 40's it often just speeds up the inevitable but if your in your 30's everything can go back to normal after treatment.

Dx 6/2/2010, ILC, 1cm, Stage IIIA, 4/34 nodes, ER+/PR+, HER2- Surgery 6/11/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Surgery 6/23/2010 Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 9/5/2010 AC + T (Taxol) Surgery 2/10/2011 Reconstruction (left) Radiation Therapy 3/16/2011 3DCRT: Breast, Lymph nodes Hormonal Therapy 5/1/2011 Aromasin (exemestane)

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