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Topic: success of pre op hormone therapy to shrink tumor

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

Posted on: Jan 2, 2019 02:24PM

terryh wrote:

grade 2, stage 11A, estro/progest pos, her2 neg large L breast tumor. do not have oncotype results yet. Nodes neg by MRI.

about to get 2nd opinion. 1st opinion is to try to shrink tumor by 1/2 to have lumpectomy and avoid mastectomy. 3-12 mos of estrogen blocking hormones suggested.(along with vit d, calcium and repeated bone density tests) I havent looked yet but am guessing there is forum here for people's experiences on the meds-anastrozole vs letrozole.

having difficulty getting specific info on # of lobular ca treated preop this way and % of success, (without additional spread meanwhile).

(would prefer lumpectomy vs mastectomy, am not interested in reconstruction)

thank you for this forum and to those who share their knowledge and experiences

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Jan 2, 2019 04:28PM dakrock wrote:

Hi Terrya

You've come to the right place.  Lots of information on these forums.  I was diagnosed with ILC end of December 2017. I also had a lump in the same breast which was pretty large.   Doctor put me on Letrozole immediately after biopsy came back with Invasive ILC.  I did not have surgery until February 23, 2018.  He wanted to shrink the lump and let the letrozole do its job before surgery.  I had two choices: and they were Lumpectomy with 26 weeks of radiation and letrozole for 10 years, or mastectomy with no radiation and letrozole for 7 years.  He worried the radiation would do harm to my chest area and possibly my heart so his advice was mastectomy was safest way to go.   I did the mastectomy and had immediate reconstruction.  It will be one year in February 23, 2019.   I don't think you ever stop worrying.   Four months after the mastectomy I developed a melanoma on my face which had to be removed by a plastic surgeon, not once but twice because the margins were not clear enough.   I see a gene doctor to see if there is any connection between the breast cancer and the melanoma.   They said rare but it can happen.   Geez I want to stop thinking about all this.  You will find many good places of information on these forums.   Good luck with your decisions.  Never hurts to get a second opinion if you are more comfortable with that.


Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/4/2017 Femara (letrozole) Surgery 2/22/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Jan 2, 2019 04:52PM terryh wrote:

did the letrozole have any effect on the tumor pre op?

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Jan 3, 2019 04:43AM dakrock wrote:

Yes Terryh it shrunk the tumor so the removal was much easier the Doctor said.  Hope this helps.

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/4/2017 Femara (letrozole) Surgery 2/22/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Jan 7, 2019 05:52PM - edited Jan 17, 2019 07:15AM by KMo1975


I saw your post and wanted to respond. I had posted a similar question back in Dec. 2017 and felt quite alone since no one else chimed in. I did try neo-adjuvant endocrine therapy -- Arimidex (anastrozole) to shrink the area before surgery. We did MRI's every 3 months to monitor the area. Here's my timeline:

Diagnosed ILC Dec. 2017

Started Arimidex Feb. 2018

MRI May/August 2018

My team was confident that the area after 6 months has decreased significantly (around 85%). At that time I was informed my ILC was actually Pleomorphic ILC. I had my first lumpectomy in September of 2018.

Hoping for clear margins, which they were, but close under 1mm. I opted for 2nd Lumpectomy December 2018. I now have one close margin just for PLCIS (out of 6).

It is now January 2019. I will be meeting my team again this week to discuss our next steps. On the table are always, re-excision, mastectomy and/or radiation.

I have found the journey to be very long and very slow. I have examined all aspects of this from mastectomy, BMX, lumpectomy and re-excision. I decided to go step by step. I have done so with not only the advice of my physician, but 2nd opinions after my 1st lumpectomy at Northwestern, Rush and Loyola in Chicago.

All support the path that has been taken so far. So my take, second opinions up front are good. It helps affirm the decision the will ultimately be yours to make from the information and advice they will give you. I wish you well on your journey.

UPDATE 1/17/19: A second path opinion found a positive margin and 2 close margins under 1mm for the PLCIS.

Now the question is more surgery for better margins? No easy answer.

Pleomorphic ILC and Pleomorphic Lobular Carcinoma In Situ 4.5 cm Dx 12/1/2017, ILC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- (FISH) Hormonal Therapy 2/1/2018 Arimidex (anastrozole) Surgery 9/24/2018 Lumpectomy; Lymph node removal: Sentinel Surgery 12/19/2018 Lumpectomy: Right Radiation Therapy 3/4/2019 Whole-breast: Breast
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Jan 14, 2019 05:53PM terryh wrote:

thank you both for your input.

I started anastrozole a wk ago after seeing a surgeon for a 2nd opinon. They are presenting my case to their team tomorrow.

The 2nd opinion surgeon seemed more holistic than the first (who is also about to retire) so I am going with her team.She recommended books by Anthony Williams and an herb called cat's claw-in looking it up, it supports immune system and a local herbalist said the surgeon was a smart person to rec this. I have an herbal consultation next wk.

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