Lobular Breast Cancer: Let's share and support each other
Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.
Interested in more discussions like this? Go to the Breast Cancer Support Group.
Connect

I have absolutely no doubt that you’ll get there too! ♥️
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1 ReactionThat 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
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2 ReactionsHi 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. 🙏♥️🙏
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4 ReactionsHi 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. 😊
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1 ReactionI 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
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1 ReactionHi 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
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1 ReactionIts 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.
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4 ReactionsHi 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!!!!
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1 ReactionWe’re happy you found Connect! This is a very welcoming forum and you’ll feel like you’re sitting around the kitchen table with old friends…all with on the same medical journey. From my experience it helps to know you’re not alone. I don’t have breast cancer but there are so many strong, courageous and amazing women here who will be able to offer encouragement and answer questions for you.
@windyshores @elliej @anjalima @callalloo and several other members are active in the discussion link below. Feel free to pop into any conversation!
-Invasive ductal cancer
https://connect.mayoclinic.org/discussion/invasive-duct-ca/
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@beautybldr has the same diagnosis and posted this discussion in August.
-HER2- and ER/PR+
https://connect.mayoclinic.org/discussion/her2-and-erpr/
How are you doing on the chemo? Any side effects such as sore mouth or nausea?
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2 Reactions