How do you cope with invasive lobular carcinoma and mastectomy?

Facing a mastectomy and starting hormone therapy can feel overwhelming, and these feelings are completely valid during such a significant time. Many in this community have found strength in connecting with others who understand this journey, whether through sharing experiences, asking questions, or simply knowing they're not alone in navigating these challenges.

I would like to find someone who has gone thru this to ask questions

Hi Janet, that would be me. I had the same diagnosis and my left breast removed. When they checked the sentinel lymph node there was cancer so they ended up taking out a lot of lymph nodes to be certain it hadn’t traveled into any additional nodes. Shortly after the drains were removed after surgery I developed lymphedema in my left arm and I still have to manage that on a regular basis. Something I’ve learned to live with it was all overwhelming at 1st plus it was recommended by my oncologist that go through chemo, but I didn’t need radiation because I had had the breast removed. I opted not to get plastic surgery. It’s taken me a while to get comfortable in my body, but I am now. I didn’t want to have an artificial breast implanted ordeal with additional surgeries! It’s nice to be able to take it off at the end of the day. I slept with a compression bra and prosthetic beanbag type boob for about a year before I felt ready to sleep without it. In many ways, I’m more comfortable wearing my prosthetic because I had dense breast to begin with, and I was off-balance without the prosthetic, but it took some time for everything to heal after the surgery. I am on a hormone blocker -anastrozole. Yes it has side effects but I’m learning to live with them. It’s better than the alternative (honestly I have a number of friends who opted not to stay on the hormone blockers, and the cancer returned metastatic so I’m willing to live with the discomfort to avoid dealing with metastatic cancer!) and over time the more active I get the easier it gets to handle the side effects. For me it is mostly arthritis in my hands and in some joints on top of one foot, super stiff in the morning until I stretch and do the things I need to do to wake up my body but I can deal with that. It helps that I’m no longer working and I’m finally retired and I am enjoying life ! 🙂 chair yoga has really helped me feel better too. If you have any specific questions, please let me know how I can be helpful and supportive. I remember how stressed out I was in the beginning making all the decisions. It feels good to be through it. I had my surgery in December 2022 did chemo in the spring of 2023.

I would like to talk to you sometime

How soon is your surgery scheduled?

Not scheduled yet

I didn’t go on hormone blockers until after I had my surgery and they determined there was cancer in my lymph node. It’s interesting how many different ways treatment is tailored to each person.

How have you adjusted to having one breast removed How it looks and I am a breast woman so one side would be flat the other have a breast

Could we talk on the phone ?

Sorry, I don’t feel comfortable giving out my phone number, but I’m OK to chat in here. Wearing my prothesis I feel comfortable. My body weight is balanced. I look normal in my clothes. The people who help fit the garments and explain options are very kind and helpful. There are probably local cancer support groups near you that you can attend in person or online Zoom and you might meet some people that are local in your area. Our Hospital had one where I live.

I had ILC confirmed in two places in one breast. Then found out I had RAD51c mutation. So I went for bilateral mastectomy with immediate reconstruction using my own tissue. 14 hours on the table. I look and feel mostly like I did before surgery, except sometimes it feels like I am wearing a bra even when I’m not! I also later had tubes and ovaries removed. I’m long past menopause but drs recommended it due to genetic defect. I don’t worry about the cancer coming back now and will stay on AI’s despite sleepless nights and bone aches just so I can have a clear mind not worry going forward, knowing I did all I could to prevent reoccurrence. I’m happy I had a good plastic surgeon!

I had invasive lobular in my right breast in 2022, no node involvement. I opted for bilateral mastectomy because I didn't want to do radiation required after lumpectomy, and chose to remove the other breast so I wouldn't face frequent diagnostics and fear of it returning there. I chose not to take the Aromatase Inhibitor at that time as I was active and didn't want joint pain. I was told there was a 1% chance of reoccurrence after a mastectomy. Last year it came back right above my right mastectomy scar. So I've had another surgery and now I'm having to do 33 radiation treatments. I'm also taking Aromatase Inhibitor now. Anastrazole gave me worse hot flashes than I already was having, so I'm taking letrozole now and it's a little better. Sucks to be in the 1% club.

So sorry to hear you’re having this experience. I will soon be following down a similar treatment path at the end of my chemo. Wishing you the best going forward

I am having surgery on the 20th I am so scared

Hi Janet, l was diagnosed with invasive lobular cancer grade 2a right breast. I opted to receive a partial mastectomy with 20 treatments of radiation. Even if you opt for mastectomy or partial, there is still chance cancer will come back. Make sure to ask pertinent questions to your medical and surgical team. Also, if you remove your breast there is still a need for radiation or chemo, whichever is recommended by your oncology team.