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

Posted by mjay @mjay, Jul 28, 2022

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.

sharon44r | @sharon44r | 20 hours ago
In reply to @rebec69 "I have Lobular Carcina in situ undifferentiated Pleomorphic breast cancer. The word Pleomorphic is the kicker..." + (show)
@rebec69

I have Lobular Carcina in situ undifferentiated Pleomorphic breast cancer. The word Pleomorphic is the kicker there due to being less than 1% of cancers. It's month 6 after 2 lumpectomies, radiation and daily anastrozole, nothing like a menopause rerun. Anyone else have pleomorphic cancer cells? I'm willing to be part of a study, the prognosis isn't great.

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I never heard of that type, I’m going to rest about it.
I wish you the very best of luck! 🙏🏻🙏🏻
Luck to us all!

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sharon44r | @sharon44r | 20 hours ago
In reply to @rebec69 "Glad you did the radiation, do any and all that will help or stop the cancer..." + (show)
@rebec69

Glad you did the radiation, do any and all that will help or stop the cancer from recurring or metastasizing.

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Thank you !

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marshgirl24 | @marshgirl24 | 9 hours ago
In reply to @sharon44r "I had the lumpectomy for multifoci lbs on left breast. Stage 1 grade low recurrence score...." + (show)
@sharon44r

I had the lumpectomy for multifoci lbs on left breast.
Stage 1 grade low recurrence score.
I was told I could skip radiation by ancoligist if I went on hormone blockers. With all the other issue I have pmr osteoporosis, they recommended tamafoxin, which isn’t the best for LBC but less bone damage with it. I really didn’t want to take hormone blockers since I have been on prednisone for over 2 yrs.
I decided to talk to radiation doctor, and he told me since a lot of women can’t tolerate the hormone blockers and since I have multifoci in 1 quadrant, I should get radiation.
I did 16 treatments, with hold the breath sessions and got extremely sore after last treatment. It only protects the breast that was affected,
Im 75, and they tell older women a lot they don’t need radiation, with stage one, I think they say that because they think something else will get you before the cancer.
Not sure if I made the right choice. It’s a hard decision to make when they leave it up to you.
🙏🙏

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@sharon44r
Like you I had LBC in one breast. For me, the right one and I did the breathing thing. At first my surgeon suggested one week of radiation but the RO decided on 3 wks because lobular is "diffuse." I think that means it can show up anywhere if it comes back. (my interpretation). The medical oncologist said I might not need those meds but I didn't want to take chances so I start at end of week. I think you are right in your assumption that at my age (78) they think you might die of something else first. (My mother was almost 95 when she passed on.) To date, I've been pretty healthy. The radiation was uncomfortable. My facility wasn't up on Mepitel film so I didn't try it. Right now I am one week out from radiation and very itchy in my chest area. My RO called in some triamcimolone yesterday so I hope that helps. I'm a bit frustrated by all the women who tell me their mom/sister/aunt had breast cancer and lumpectomy and are still alive and well. No problem. They don't know if it was ductal. My bet is that it was. I'm trying to get my info/survival rates re: LBC so let's stay in touch!

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sharon44r | @sharon44r | 9 hours ago

The survival rates are good.. it’s suppose to be slow growing. Yes all my friends tell me they
Know people that had it and was no big deal. Different when it’s you. Luckily I didn’t get the weakness from radiation , but I am a month out and still peeling and discolored. Hope you didn’t get 5he weakness too🙏
You only need the hormone blockers if you are estrogen positive and her2 negative
I think nt diffuse your doctor meant they are not a lump, more branch like, and they can be multi foci.. more than one. Mine were right next to each other. Even though my margins were clear, I figured why couldnt another pop up close to that.
I never new about that protective film you mentioned until I just read about it. I think everyone reacts differently to radiation.
Wishing you the best! Happier holidays!

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cmocmo | @cmocmo | 6 hours ago
In reply to @rebec69 "I have Lobular Carcina in situ undifferentiated Pleomorphic breast cancer. The word Pleomorphic is the kicker..." + (show)
@rebec69

I have Lobular Carcina in situ undifferentiated Pleomorphic breast cancer. The word Pleomorphic is the kicker there due to being less than 1% of cancers. It's month 6 after 2 lumpectomies, radiation and daily anastrozole, nothing like a menopause rerun. Anyone else have pleomorphic cancer cells? I'm willing to be part of a study, the prognosis isn't great.

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I had stage 1 pleomorphic lobular breast cancer on the right side 18 months ago. The word “pleomorphic” makes me uneasy, and I would rather have had classic lobular, but I was told that with proper treatment (in my case mastectomy, chemo, and endocrine therapy) my chance of recurrence went down to 10%. Physically I feel great, and when I get worried, I try to focus on the positive, like how odds are in my favor of it NOT coming back. Did you have a high onco score?

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rebec69 | @rebec69 | 3 hours ago

I'm in. I'm still shocked after the diagnosis.

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