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

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.

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.

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!!

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.

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.

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.

@amolson, you may also wish to see the helpful posts in this discussion about ALH:
- Atypical lobular hyperplasia: Did you have surgery? https://connect.mayoclinic.org/discussion/atypical-lobular-hyperplasia

@amolson thank you for your kind words….it’s a difficult journey and thank you for your support as well 💗 Prayers are being sent your way and Happy Holidays to you as well! 🎄🎁⛄️

So the fact that you took your personal time to respond and give me some advice brought tears to my eyes as that is BEYOND kind of you. I sooooo appreciate your time and concern and especially your advice since it sounds like you have been going through some very scary issues yourself!! I know I have to do more research because no one is going to advocate for me better than me but it is good to hear from people like you who have been dealing with it. I think I am going to want to have the surgical removal and pathology to look at all the cells they remove as this look and see attitude concerns me. I watched my mother and father both die of cancer this last year within 6 months of each other and it grows sooooooo fast 🙁 But time will tell as I do more research, THANK YOU AGAIN for you time as it did help and I TRULY appreciate it. Now YOU take GOOD care of yourself and follow your own advice too!! NOTHING but prayers being sent your way and try to have HAPPY Holidays!!

@amolson I too, have been diagnosed with atypical lobular hyperplasia (ALH) I had invasive DCIS a year prior to the new diagnosis of ALH so I already had a surgical oncologist. I guess monitoring and sometimes medication is recommended for ALH. My surgical oncologist recommended monitoring only for me since I am already on an aromatase inhibitor because of the prior cancer diagnosis. I wasn’t comfortable with this recommendation because I had read that surgical removal is recommended for ALH because there might be cancer “lurking” near the atypical cells. I asked for a second opinion from Dana Farber cancer institute and the doctors there concurred with monitoring and medication approach. So, I guess my advice for you is to follow through with seeing the oncologist and ask questions about treatment options. Write the questions and answers down. Bring a friend with you to also take notes. Do a bit of research about your diagnosis so you understand what your diagnosis means. If you’re not understanding what the doctor is saying, ask for clarification. If you’re not comfortable with the recommendations, seek a second opinion. I hope this helps and please keep asking questions…you are your best advocate!