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Invasive Lobular Carcinoma

Gavinsgrandma's picture
Posts: 18
Joined: Jun 2013

I am fairly new to this site, I was Dx with ILC 2 weeks ago my surgeon said he was not sure on size because the mammo showed 3 1/2 centimeters and the U/S showed 2 centimeters so he figured about stage 1 or 2. We are waiting on the final path from the Bx but it did say low grade and slow growing. My surgeon also said that I am a moving target for the cancer to show up in the other breast and I have been doing my own research and I have decided on B/L mastectomy with reconstruction. I am very scared and some day's I can hardly think, I see the plastic surgeon this Friday and I should no more then and hoping for more answeres on the pending pathology. If anyone else with this Dx or experience can share with me I really would appreciate it.

Thanks, Shary

Posts: 380
Joined: Nov 2012

Hi Shary,

I am sorry you are here, but welcome.  I too was diagnosed with ILC and decided to do a B/L mastectomy.  I did not hesitate to do the B/L because ILC is hard to detect.  I was being screened with yearly MRI's along with mammo's and sono's for years because of LCIS and it wasn't detected until it was almost 2cm (just shy of Stage 2).  When I did have the other breast removed it was filled with LCIS so I was glad they took them both off.  I had immediate reconstruction with expanders and I did well with both.  The drains were annoying and uncomfortable for about a week, but I was very lucky to not have any pain.  I am happy with the results, but I was more happy to have the cancer out.  My tumor was also slow growing.  I had the oncotype DX test done and because it came out low I decided not to do chemo.  After everything, the most surprising thing was how emotionally draining it all is.  It really takes a lot of time to take it all in.  If you feel overwhelmed, do not delay talking to your doctor about how you are feeling.  They can help you. Do not suffer needlessly.  Everyone handles stress differently, but don't try being a super woman.  Being diagnosed with breast cancer is scary, especially at the beginning when you are waiting for treatment.  This site will be a wonderful help to you because the pink sisters and brothers here understand first hand what you are going through.  

We are here for you and pulling for you.  If you have any questions just ask away.  



DianeBC's picture
Posts: 3888
Joined: Jun 2009

Hi Shary and welcome to the site that no one wants to join.  I didn't have this type of bc and had a lumpectomy with radiation. 

Wishing you good luck!

Hugs, Diane

Clementine_P's picture
Posts: 498
Joined: Feb 2011

Hi Shary,

I was diagnosed with ILC in one breast and opted for a bilateral mastectomy with placement of expanders as well.  The waiting for your pathology reports and appointments with doctors at the beginning can be really stressful and scary.  I'm sorry you are going through this.  I was stage IIA.  I found the surgery to be pretty easy physically.  I spent two nights in the hospital but was told I could leave after one.  I had a slight spread to my nodes so I had chemo.  After chemo, I had my expanders swapped out for implants.  That surgery was a piece of cake.  I was home from the hospital in time for lunch. 

Take Care,


Gavinsgrandma's picture
Posts: 18
Joined: Jun 2013

Thank you ladies for your input I had a F/U this morning with my PCP and he was concerned that the B/L mastectomy was pretty radical. I already have a consult with the PS fri that I would like to keep  as it is a 3 hour drive. I also called surgeons office today to go ahead and schedule an MRI to be done on the 27th, so we will see how the other breast looks. I am hoping that having all the information I can will help me to make the best choice for me. still no final report on Bx as of today.

Thank's again, Shary

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I am hoping that the MRI shows no sign of bc in your other breast Shary.  It is a big decision for you and I wish you the best.  I am thankful that I could have a lumpectomy and save my breast.  But, sometimes there is no choice.

Good luck and keep us updated,


hope67's picture
Posts: 181
Joined: Apr 2013

First, let me say that I am sorry that you have to be here. I know how overwhelming all this is. I was diagnosed 3 months ago and there were times (and still are sometimes) when I could hardly breathe.

I was diagnosed with Invasive Ductal Carcinoma and Invasive Lobular Carcinoma. My mammogram showed nothing because the tissue was too dense. US showed only IDC. I had a mastectomy with immediate reconstrucion with expander. Path report showed also ILC which was a total surprise, it was multifocal and spread to one node. I had no chemo and started Tamoxifen 3 days ago.

I have read that ILC is bilateral in 20-30%, so I made a decision for a second mastectomy, mainly because ILC so so hard to detect. It was a hard decision, but it seems the only reasonably for me. I am still waiting for the surgery. And I don't say that you should do the same, I am just saying that you need to explore all the options and choose the one that seems the best for you.

Good luck and keep us posted, Carmen

Angie2U's picture
Posts: 2993
Joined: Sep 2009

Hi Shary and I am sorry also that you find yourself here.  Wishing you good luck with your MRI.  Keep posting to update us.

Hugs, Angie

Posts: 94
Joined: May 2013

Shary, As you know I have ILC. I had 4 tumors in one breast, the largest was 2.2, all 4 measured 5cm. I was a stage llA with no lymph node involvement. I was er+, PR+ and HER2-. I do have to have 16 chemo treatments. Good luck and please keep us posted.

Posts: 28
Joined: Apr 2013

I also had ILC with 2 positive nodes on the left. Mammo on right read clear but I have a family history of bilateral BC so opted for BLM and was so glad I did.  Right was LCIS. Had AC and Taxol. AC was tough, Taxol caused neuoropathy but new med should hopefully prevent it-Metanx. I had Taxol over 12 weeks because of profound nausea but felt better each week. Rads were easy for me. More tired after done but better after about 2 weeks. Did not reconstruct. Doing well, 2years, 4 months out from treatment. Thoughts and prayers, for you. After you research and get MD advice, go with your gut. I believe in women's intuition. jojo2

Posts: 563
Joined: Dec 2010

Yes same cancer as you.  Mamos don't pick this type up and didnt.  Lump in one side so mastectomy done as there was a question mark on another area in same breast.


Turned out second area not cancerous.  So was pure luck that ON CLEAR SIDE plastic surgeon reduced this to match breast cancer side and a large amount of pre pre cancer cells were found in material taken away which they always test just in case.  Next month second mastectomy.  This one often travels to other side and it had done so.  Lump was just in side recommended size for chemo so had four sessions.  


I am very pleased I have had bilateral.



Gavinsgrandma's picture
Posts: 18
Joined: Jun 2013

Thank you all for your support, it really means a lot to me, after meeting with my PS and really liking him I made my final decision for BLM with reconstruction. I do not want to wait around to see if it shows up on the other side 20% chance or so and I just don't like those odds. No surgery date yet, still pending. I did get a nice call from the radiologist while I was out of town and he said prognosticaction report shows Grade 1 Er+ PR+ Her2- with no over expression.will keep everyone posted

Posts: 94
Joined: May 2013

Good for you! I think you will be happy doing this. I wish you the very best and will keep up with you :)

Candi Cane
Posts: 161
Joined: May 2013

I am glad you made your decision.  Good luck with your surgery!

Cheryl S
Posts: 82
Joined: Jun 2013

Yes, good luck with your surgery Shary.

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