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

I had my yearly screening mammogram on 12/8/22 and it came back suspicious. On 12/15/22 I had a diagnostic mammogram followed by an ultrasound, resulted as BIRADS-4 and was told that day that I needed to have a biopsy. On 1/6/23 I had a stereotactic core needle biopsy. Pathology said negative for malignancy but I was diagnosed with ALH. The radiologist did not agree with pathology because I have pleomorphic calcifications in a linear distribution which he says are suspicious of malignancy. I now have to have a breast MRI and then an excisional biopsy. Everything is so delayed where I live, my biopsy isn’t until 3/6. I am 50 years old and my mother was diagnosed with breast cancer when she was 50. I am terrified, all the waiting is killing me. I feel stuck.

I have absolutely no doubt that you’ll get there too! ♥️

That is wonderful news! Thanks so much for sharing, it means so much to us newbies! I wish you many years of good health and abundant blessings!!!

Kind regards,
Diana

Hi Diana. It has been a little over four years since the date of my diagnosis, three years since my year of treatment and I’m doing great!

Along with my lumpectomy, I had four rounds of A/C chemo, four rounds of Taxol and finished one full year of Herceptin and Perjeta.

I then had the standard four weeks of targeted radiation.

I know this all sounds incredibly daunting but it’s very doable. Just take it one week at a time and do the best you can.

I honestly feel fabulous. Currently I see my oncologist every six months along with having bloodwork and my annual screening mammogram.

You’ll be okay. It just takes time. 🙏♥️🙏

Hi Lisa,
I am newly diagnosed with triple-positive ILC stage 1 with clear lymph nodes, lymphovascular, and margins. I recently had a lumpectomy. Will see my oncologist soon for my treatment plan. I was wondering how you're doing. 😊

I had invasive lobular 2a no lymph nodes. Had left side masectomy no reconstruction. Didn't want more surgery. They alternate every year with MRI because I have very dense breasts and it is harder to find on mammo alone. You might ask your team if that could be done for you. They also do a diagnosticmammogram we don't have 3D ones in the Maratimes Canada.
I get a visual check every 6 months and they felt something by arm pit which she thought was scar tissue but sent me to get an ultrasound to have in case something started to grow. Ultrasound turned out fine. So they know lumps and bumps and which are bad ones. I have fibrodenomas in right breast. I have a little lymphedema in arm pit and do espxcersizes to help with arm tightness. I hope you are doing well and I am two years out from treatment and it gets a little easier. I try not to worry to much and it helps knowing for 5 years a Dr sees you every 6 months. Take care

Hi trust me I agree. But so happy we have each other to share. The CMF does cause nausea. I drink 3 L of water the days off and the following 2 days to avoid cystitis and to assist in its clearance. I get my Neulasta the day after. There is mild bone pain with this.
I get a dose every other week.

SE: main mild nausea and tiredness

I hope this answers some of your questions. What were some of your side effects on TC

Its good that you have a good doctor, that helps.
I know this is not easy and I am so sorry about your cancer. I am not sure if I am getting another MRI this year.
I'm allergic to both contrast dyes so its not a fun process during the allergy procedure beforehand.
Thanks for sharing...

I am not taking chemo or radiation, i was put on tamoxifen, made me so sick, i refused to take it. i am to see oncologist the end of this month. she ask about me trying letrozole, i will try it but if i have issues with it, i will quit taking it. I am 80 years old and my cancer is stage 1 and at this stage of my life i am looking for quality of life. I am having good days, have been off tamoxifen for 2 months and feel good.

Hi Selwena,
Welcome but so sorry you had to join our club. I am currently in chemo too for a 1.96cm. Oncotype of 34 pleomorphic ILC. My chemo stated as TC but I had a toxic reaction and was switched to CMF. It isn't as common a regimen so if you don't mind me asking, have you had any side effects to CMF? I had one dose and they paused me because the damage from my toxicity to TC flared bad. I get my second dose dense treatment next week. Do you get neulesta with each cycle? How are you doing? It is so overwhelming at times. Hugs!!!!