Stage 1, very treatable invasive lobular carcinoma

@kbradtke:

I am so sorry for this unfortunate BC recurrence:(! It must have been such a devastating, shocking blow after 23 years of healthy life. My heart and prayers went to you upon reading this...

Did they prescribe Tamoxifen for you back then? Based on the fact that your cases of BC in both times seems to be ER+, I know you had completed lumpectomy surgery, chemo, and radiation treatments back then, but did you take Tamoxifen 23 years ago? Just a bit curious because Tamoxifen was first synthesized in 1962, and it had been used for decades to treat breast cancer and reduce the risk of its recurrency...

Pray for you on your journey ahead with successful treatments, full and speedy recovery!

My onc back then wanted me on tamoxifen which I tried for 1-2 months and didn’t like so stopped. If my tumor then was as lo estrogen as it is now, I’m glad that I stopped given that it would not likely have had any impact.

Thanks for your comments and well wishes.

I had stage 1 ILC 12 yrs ago. Did a lumpectomy. Did all follow ups every year. It just came back and because lobular is hard to detect it wasn’t caught until tumor was 6.7cm!! Ultrasound caught 4 mm. MRI which is not a common screening tool just now caught the largesse. Now waiting /testing to see if I have stage 4. Do I wish I had had a mastectomy 12 years ago - YES

I was also diagnosed with early stage invasive ductal and then on second opinion at Mayo, also diagnosed with invasive lobular. Stage 1A. I went back and forth in what to do, as my first lumpectomy did not get clear margins. After a lot of research, meeting with surgeons, consult with plastics, and writing out pros and cons of doing another lumpectomy, single mastectomy, or bilateral, I went with bilateral mastectomy with reconstruction. Thankful that I did, as the breast that wasn’t showing anything actually had atypical lobular hyperplasia. The surgeon said something was brewing in there.

It’s a very difficult decision. I would advise taking the time to pro/con list of your options, and once you make a decision, sit with it for a day or two and see how it feels.

I wish you all the best!

Hmmm, Chemo again?? and it is not invasive to lymph nodes? I would definitely get a 2nd opinion.
Is the ILC this time multifocal, in lymph nodes too? Are you at the Mayo Clinic? How does this Chek2 gene
present in relation to lobular BC & your treatment plan? I have not heard of the Chek2 .
Best wishes in this reoccurrence.

When I first had BC 23 years ago I think the protocol was chemo for anything over 1 cm. I had my excised tumor retested for hormone receptors. Luckily this time ER was 60% so am now waiting on onco score.

Also if you check a BC website many genes are implicated, including chek2. This gene mutation puts me at higher risk for both BC and colon cancer.

@rococo325 - Just fyi, I have tested for the CHEK 2 mutation. I have a rare breast cancer called Low Grade Adenosquamous Carcinoma (LGASC). It was on this Mayo platform that I connected with another LGASC patient who also had the CHEK 2 mutation.

I had a double masectomy in April 2024 after my March 2024 diagnosis of stage 1 invasive Lobular BC. I was afraid that it would come back larger. Onco was shocked they found it via regular mammogram. They said it was 1.4 cm, but after surgery it was found to be 3.7 cm. In other words Lobular BC is a "Sneaky" cancer. I didn't want to live on pins & needles. I'm stressed enough trying to figure out How I even got BC. Was it something I did? Ate? Drank? Any answer would at clarity to my life. One thing is I have NO regrets having the bi-lateral masectomy. Just finished reconstruction & they look "normal". On meds still, glad no more mammogram.
Do the double masectomy- come out Swinging & Kicking Cancers Ass. Be Blessed my fellow sister in arms. We WILL beat cancer!!!

@moloney1231 I'm so sorry that this happened to you. I also was diagnosed with lobular, and it is a creepy type of breast cancer! Could I ask, did you have radiation and/or hormone blockers after your lumpectomy? And did it come back in the same breast?