Lobular Breast Cancer: Let's share and support each other

Only needed a biopsy on the original breast. The other spot was gone, PG! Now waiting to see if it is the same type of cancer. It is right next to the other one. Invasive Lobular Carcinoma...Hate the word Invasive but I guess that's why another spot showed up! Surgery still January 5th, just not sure what kind. Everyone is telling me to go ahead and have the whole breast removed. I'm kinda leaning towards that, will see what the Dr suggests.

Glendy,
I’m navigating similar waters as you. I just got biopsy results today. Atypical lobular hyperplasia bordering on lobular carcinoma in situ in a background of slightly fibrotic breast tissue. Negative for atypical ductal hyperplasia, DCIS or invasive carcinoma.

Pathology is high risk and concordant. Breast surgical consultation is advised.

Breast specialist wants to do lumpectomy but I don’t want to face this potential ugly beast down the road. I’m putting serious thoughts on prophylactic mastectomy. I had genetic testing 1.5 years ago which revealed check 2 gene mutation making me high risk breast cancer. I also have had 10+ years of nipple discharge which was tested and deemed non-problematic. I wonder if this little nugget has been with me a while?! I’m a realist…I want to be strong and make wise decisions that are not alarmist, but make sense with my situation. I have just found this forum while researching today. I’m happy to mesh information with people sharing the same worries and situations as me.

Have you had genetic testing to see if you have genetic predisposition to cancer? Just curious? I had that done 1.5 years ago and found I was check 2 positive (increased breast cancer risk). Just received biopsy results following multiple 3D scans, ultrasound and biopsy results show:
Atypical lobular hyperplasia bordering on lobular carcinoma in situ in a background of slightly fibrotic breast tissue. Negative for atypical ductal hyperplasia, DCIS or invasive carcinoma.

Pathology is high risk and concordant. Breast surgical consultation is advised.

I’ve got a breast specialist who has been following me since genetic testing was done and he definitely wants to do lumpectomy. I worry if that’s enough???

Thankful this is not cancer, but want to get a step ahead if possible. I hope you get answers for your situation. Let’s share notes.

SOOOOOooooo appreciative that you took your personal time to respond. YES...I am VERY thankful at this point it is NOT cancer as I KNOW some of the hell others have been and are going through but I too am like you and want to get a step ahead of it IF at all possible because once that rotten cancer grows it never stops!!! My specialist said that we should go ahead and remove what they say (only the size of a walnut so I know I am much luckier than most) so they can do a full pathology analysis on everything they removed. As that let's wait and see IF what you have grows more and then we can always remove it just scares me. I feel like a ticking time bomb just waiting and wondering if it is turning into cancer while we are waiting to see :(. It is good to hear that someone else wants to stay a step ahead like I do. THANK YOU again for your input and I HOPE NOTHING but the BEST for you!!

It can be frustrating contemplating the options. Prophylactic mastectomy, although scary, somehow gives me peace of mind that I’d be doing something to remove future possibility of anything coming to get me later. My Dad had prostate cancer years ago and he took baby steps in the process trying not to be too over reactive and spare removal. He did not win his battle. I’m coming from a daughters perspective of his cancer path. I don’t want to re-live that. I have Pre-cancer. It is different, this I realize. I know I sound a little crazy, but our life experiences make us who we are. Helping him through his battle I am finding gives me courage to contemplate taking the steps that others may not. I’m not saying I’ve decided I’m going to have a mastectomy, I just found out less than 7 hours ago about my biopsy results. I will meet with my breast specialist on Tuesday to discuss the direction that is right for me. I hope you will soul search and ask your doctors and yourself the tough questions too. It’s such a lonely feeling. My husband thinks I’m jumping the gun…I don’t know, I just don’t know? It’s nice having a forum like this where we can talk openly and freely. I hope I am not offending anyone by doing so. It is not my intension to scare or make anyone question what is right for them. I’m remembering testimony from Trump’s press secretary Kayleigh-Mcenany and actress Angelina Jolie. Both had double mastectomies. I’m going to do lots of research and listen to my doctor and decide what is right for me. Every story is inspiration to be strong. If you chose not to take dramatic measures, I would think about getting genetic testing to see what you are dealing with. It can also allow you to get a baseline. I’d love to keep the dialog going as you explore options.

I have been diagnosed with alh and had tissue removed. Now deciding on more treatment. I am so scared that since it was removed. Scared that it is just going to go to a deeper tissue and cause cancer.

Valid fears. I’m almost right in sync with you sister!! Right there with you. I can certainly relate. I don’t know what insurance covers, not that I would boil it down to cost, but I’m just curious if insurance will require you and me both to take step by step measures before they’d allow for more aggressive approach? Questions to ask. Mulling to do.

Wow!! It is amazing to hear us all feeling the same way!! I have all those same feelings too! I watched my mother die horribly from lung cancer that metastasized to her brain and within 6 months my dad got pancreatic cancer and died miserably and broke my heart to watch!! I too want to be proactive and cut out whatever might progress to that!! It is just so scary!!!

Same here! I watched my sister who had stage 4 breast cancer at age 48. It was terrifying! She had a lumpectomy and then was prescribed Tamoxifen. I need to make a decision with alh. I am a healthy 67 years of age. Going to an Oncologist in January. Think I want a double mastectomy.

I am 46 and we are going through a similar time