New please bare with me I have a question

Tinker12354

hello all,

I hope everyone is well as can be .i have recently been diagnosed with lobular cancer . I had it removed and 3 lymph nodes as well .

I was lucky and had my loved ones and god/ higher being watching over me and it did not spread.

My question is I know have the choices to make that you all know , mastectomy or radiation/ drugs

If you were in my shoes early stage lobular which would you chose ? Please ladies feel free to be honest . All your opinion matter . Love and light to all of you . I hope and pray that you all become healthy and cancer free . ❤️

farmerlucy

I chose bilateral mastectomy. I was tired of all the screening. My breasts were extremely dense and finding cancer in them was like finding a snowflake in a snowstorm. I’ve never ever had a second thought about it. It is what it is. The implants don’t feel the same as the original breasts but after eight years I don’t remember what it felt like anyway. These past eight years have been very meaningful. I’m not who I was pre-cancer, but I’m happy and at peace. You’ll know in your gut what decision is right for you. You refer to prayer above. I often pray for wisdom and guidance. Sometimes the answer surprises me, but I always get an answer, even if it is “wait”. Xoxo Best wishes.

farmerlucy

PS it is likely you’ll need to do the meds with either decision. Mastectomy only gets you out of radiation.

KMom57

I didn't have a choice to do lumpectomy, but even before I knew that, I had decided on bilateral mastectomy. For me, it was because I was having annual MRIs for dense breasts, and they still missed my lobular. Going back to an MRI two years before my diagnosis, you can see it in the exact spot where the tumor ended up. Small but shining bright. The radiologist said “should we have biopsied that? Probably but look at all this other stuff going on in your right breast, and it's fine." And I thought, how do you know? You thought that was fine too. What's more, I kept saying for a number of years that something was wrong on the left side of my body (weird arm and hand stuff)and doctors kept telling me I was fine. In the end, I found it myself. I knew I'd never trust screening moving forward, and never be at peace. I wish I could have made a different choice, as I miss my breasts, and recovery is no joke.But for me, it was the only choice that would give me peace. What I really wish though, is that I could go back to a time before 2017, and go to more than one Breast Center for imaging. Not to the same radiologist every single year. Another set of eyes might have found it.

Sabbymama

Hi Tinker,

Sorry you are facing these dilemnas, but glad that you have apparently caught it early. In my case, I had an initial diagnosis of lobular carcinoma and a positive lymph node based on biopsies. MRI completed the following week showed additional suspicious tissue that was confirmed to be malignant by a later mammogram guided biopsy. CT scan showed more questionable lymph nodes. As a result, I had a mastectomy of the left breast and axillary dissection with 22 nodes removed. I was not given the option of a bilateral mastectomy as it would have been considered "elective" during the COVID pandemic and I really wish that I had been able to do so. 4 of the lymph nodes tested positive with extranodal extension and LVI present, so my oncologist suggested that to not do chemotherapy would be negligent. I am currently in the middle of my 4 rounds of TC chemotherapy and there is a plan to pursue radiation after the course is complete. In hindsight, I would have ideally had the bilateral mastectomy and gone flat. I am overwhelmed by all the treatment and dreading the thought of the future surgeries to remove the tissue expander and reconstruct. I feel like my right breast is a time bomb waiting to go off and start the whole process again. My breasts were very large and dense, which complicates finding hidden issues. My suggestion to you would be to make sure you are receiving thorough testing (MRI, CT, Bone Scan) to determine any further involvement, especially since lymph node was involved. Consider your lifestyle, work and family commitments, and your tolerance for long term treatment plans and think hard about what will be best for you. Best of luck and stay strong!

Cheers,

Sabrina

Moderators

Hi Tinker, and welcome to Breastcancer.org.

We're so sorry for the reasons that bring you here, but we're really glad you've found us. You're sure to hear from more members soon who can weigh in with their experiences and share some insight.

In the meantime, the main Breastcancer.org site has some helpful information:

• Invasive Lobular Carcinoma
• Mastectomy vs. Lumpectomy

In addition, there's a helpful forum here on ILC (Invasive Lobular Carcinoma).

We hope this helps. Please don't hesitate to let us know if you need any thing at all!

--The Mods

cyathea

Tinker12354, these are really tough decisions. Initially, I thought I had an earlier stage than Stage IV, so I was thinking maybe I could just have a lumpectomy like my sister. As KMom57 said, a BMX is “no joke”. Be prepared that you could have nerve pain under your arms and down the inner side of your arms for several months. Not every gets that but I did and I wasn’t prepared to have that side effect. (It’s getting better now.) And lymphedema is no small thing for one’s quality of life

My sister has been cancer free for 10 years. She did radiation and Tamoxifen but no chemo. She has dense breasts as well and is being checked by MRI.

In the end, my surgery decision was basically made for me when they found a lesion on my spine on a CT during chemo. BMX seemed like the only good choice at that point. I also decided to do rads to increase my survival odds and prolong the time to recurrence. I remain optimistic and at peace with my decisions.

My Mom had DCIS 30 years ago and opted for a single MX and chemo. Three years ago they found a tumor in the other breast. She decided on surgery and they found lobular that had not shown up on the tests. She was obviously glad she had done the MX instead of a lumpectomy.

So, I’m glad my sister got to keep her breasts and I’m glad my Mom and I are both flat.

Ask your doctors about how they view the risk of your particular situation. There might be a few things that tip the scales for you in one direction or another.

wallycat

Oh god how i wish there were some higher power and make cancer a thing of the past...but back to reality.

My journey was to first get the SNB to determine what stage I was. When you said you had 3 nodes removed, do you have any results on them? Any staging?

I had genetic testing done to help me decide if I would do an oopherectomy or not (my cancer was hormone positive). I had the onctype DX done which should have helped me navigate if I should do chemo or not (I fell into the gray area) ..and the TaylorX study is now out with results to help those of us in the gray area.

It is difficult to decide on mastectomy but for me, it was the only way to go since like many here, I did not want constant monitoring, dyes for scans, blah, blah, blah. Once I made my decision, the radiologist I spoke to was very sweet and told me she was thrilled I had made the decision I did. In her circle of patients, she had seen too many contralateral recurrences and thought I had sound reasoning. Again, I was fortunate my bmx was painless with zero post surgical issues, but that is not always the case, so always something to think about.
Good luck...it is all we have but hopefully, science can catch up!!

msphil

hello sweetie I had mastectomy and radiation I wanted what would best chance for long survival. I am this yr a 26 yr Survivor Praise God and also celebrated our 26yr wedding anniversary was making plans at diagnosis.msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast got married then 7wks rads and 5yrs on Tamoxifen. Prayers up always for us all.

LillyIsHere

Tinker, depends how old you are and your family situation. I would recommend double mastectomy since Lobular is very tricky cancer. Most of the times spreads in both breasts. Good luck!

Tinker12354

Hi ladies,

Let me start by saying I’m so sorry I didn’t see any of these post until now .

I’m speechless at the out pouring of support and stories you all have shared . My heart goes out to all of you . I’m going to read all of them and I am so grateful for all the support and help .

This journey is so hard and can’t imagine how difficult it is for those that have been in later stages .Words can not express my empathy for you.

Ladies you are BEAUTIFUL WOMEN THANK YOU SO MUCH !❤️

They have convinced me to start the tamoxifen to see how I react and also keep me safely at bay .I was supposed to travel to see my sister before I went ahead and made a final decision but covid seems to be at play again (ugh).

I have seen all drs but the plastic surgeon now.The radiation dr feels that my cancer was caught so early that it will be same” percentage as masectomy” because there is still a small percentage to get it back in the tissue left behind “

I don’t know if I trust all the drs say. It’s all so confusing at times .

Thank you all again xoxoxo

Anonymous

As others have mentioned, ILC has a higher tendency to hide from routine scans, like mammos (that happened to me--five years of mammos reported no evidence of cancer, yet it was hiding and growing all along). ILC also has a higher tendency to be multi-focal (found in both breasts). In addition, dense breast tissue further hides any problem that might be detected by routine scans. I opted, as you can see below, for a bilateral mastectomy and am on an anti-hormonal, since ILC is usually hormone dependent as well.

There is a fairly strong ILC thread that you can peruse to find more information about that subtype of BC. It's a bit different from the more common IDC and treatment decisions should take those differences into consideration.

I'm sorry you're having to experience this-but you'll find such good information and support here!

https://community.breastcancer.org/forum/71

windingshores

I was going to write the same thing. Lobular is harder to find on imaging. I would have a double mastectomy.

But we don't know a lot about you (age, for one thing) or your cancer (grade, assume it is hormone positive).

Sorry to be late to respond and hope you are happy with your decision-making process.