Just diagnosed with invasive lobular carcinoma (ILC): Any advice?

Posted by francinemoran @francinemoran, Jan 4, 2023

I’ve just found out i have invasive lobular carcinoma. Stage 2. I have an appointment with a surgeon today and an oncologist next week. Not sure how all this works makes me nervous. Any help would be appreciated

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@catlover2020

It turned up more bad news, left breast needs a biopsy. Biopsy to be done
during MRI. The bone that runs down between my breast, is longer and
sticks out farther than other people. Birth defect. They gave me 2mg of
diazipam. I just don't know how many to take. ??
I can't find my password, so beside myself these days. Overwhelmed. Why are
they talking radiation and chemo? I'm excepting of a double mastectomy..

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@catlover2020, it sounds like many things were spinning out of control earlier this. Understandably. Did you have the biopsy done? I know I asked this before, but how are you doing now? I'm listening.

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I had radiation with no adverse effects for lobular carcinoma. No chemo was necessary. I was on Letrozole for a little over 5 years and am doing very well.

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@maggieb892

That was not suggested to me following any of my MRIs. I was told to drink lots (no specific amount) of water. Let me know what happens.

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You have to request it. Please read the paperwork that you sign when you give permission to administer the dye. I just want to correspond with people that have done the flush IV. Thanks

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@kstar077

I was diagnosed with ILC in left breast. Has anyone out there had the saline flush after the one year mri? It helps get rid of the gadolinium (sp) dye they use with mri to show if any more cancer in breasts. My mri is coming up in july. I am requesting the flush and want to know anyone that has had it after mri? Thanks

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That was not suggested to me following any of my MRIs. I was told to drink lots (no specific amount) of water. Let me know what happens.

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I was diagnosed with ILC in left breast. Has anyone out there had the saline flush after the one year mri? It helps get rid of the gadolinium (sp) dye they use with mri to show if any more cancer in breasts. My mri is coming up in july. I am requesting the flush and want to know anyone that has had it after mri? Thanks

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@kayhaun

Hi! I am 6 mos along after discovery of ILC in left breast. I have had to struggle at each treatment option, deciding whether or not to do it. Ultimately I came to terms with each and feel comfortable that the oncology group does know what’s best! Ha! Here’s what I learned: that cancer is very slippery and hard to find in its early stages. The problems lie more in the aftercare, after biopsies and surgeries on obvious tumors, making sure that we don’t have recurrences as those little bad cells grow bigger in our bodies. So after my left breast mastectomy, I have been taking Letrozole to stop estrogen from feeding cancer cells. I have had 29 radiation sessions. I have started taking a chemo pill Ibrance, and I will be receiving infusions of Zometa every few months to offset the bad effects on bones of the other medicines. These meds will be part of my daily life for years, making sure the cancer cells are really dead, gone, undetectable at least. All in all, I feel well except for sore joints. It turns out to be a journey we undertake, not a one-time intervention. I hope you find this a bit helpful and I wish you health and happiness as you make your journey. Focus on living your days.

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I'm on a similar journey with lobular invasive cancer. It's really daunting at the beginning - with what seems like a non-stop schedule of ultrasounds, biopsies, MRIs, surgery, medical oncology appointments, radiation oncology appointments, and LOTS of decisions along the way. What's helped me is realizing that life will never be as it was.....but with the right care, it can go on.
I can put up with some pills, aches and pains, and the new normal of being aware and vigilant about my well being.....if it means I can enjoy my family, watch my grandbabies grow up, celebrate the new appreciation of my good friends, and see the beauty in every day. It's all there.....along with all the uncertainty. Concentrating on the positive is tricky some days, but isn't that the way it is in life - even if we're perfectly healthy? There's a lot of life to live........hang onto the snippets of good news when you get it. And hang in there. You are not alone! This chat board has been a great help to me. I'm grateful for everyone who participates. I wish all of you good luck, and good days to outweigh the bad. We're all in this together.

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Hi! I am 6 mos along after discovery of ILC in left breast. I have had to struggle at each treatment option, deciding whether or not to do it. Ultimately I came to terms with each and feel comfortable that the oncology group does know what’s best! Ha! Here’s what I learned: that cancer is very slippery and hard to find in its early stages. The problems lie more in the aftercare, after biopsies and surgeries on obvious tumors, making sure that we don’t have recurrences as those little bad cells grow bigger in our bodies. So after my left breast mastectomy, I have been taking Letrozole to stop estrogen from feeding cancer cells. I have had 29 radiation sessions. I have started taking a chemo pill Ibrance, and I will be receiving infusions of Zometa every few months to offset the bad effects on bones of the other medicines. These meds will be part of my daily life for years, making sure the cancer cells are really dead, gone, undetectable at least. All in all, I feel well except for sore joints. It turns out to be a journey we undertake, not a one-time intervention. I hope you find this a bit helpful and I wish you health and happiness as you make your journey. Focus on living your days.

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@colleenyoung

@catlover2020, how did the MRI go? How are you doing?

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It turned up more bad news, left breast needs a biopsy. Biopsy to be done
during MRI. The bone that runs down between my breast, is longer and
sticks out farther than other people. Birth defect. They gave me 2mg of
diazipam. I just don't know how many to take. ??
I can't find my password, so beside myself these days. Overwhelmed. Why are
they talking radiation and chemo? I'm excepting of a double mastectomy..

REPLY
@catlover2020

I also have just been diagnosed with invasive lobular carcinoma, stage 1,
Tomorrow I go in for MRI. Can Someone Pls tell me how this works?? I know nothing. I have questions

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@catlover2020, how did the MRI go? How are you doing?

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@maggieb892

They refer to the receptors on the cancer cells. ER= estrogen, PR= progesterin and HER 2=a protein that is on the cancer cells. Knowing the positive receptors helps the oncologists know the course of treatment. That is a good question to ask your daughters oncologist

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Thank you

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