Team ILC Warriors
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Blessedly, both the Radiologist and my Oncologist believe this is scar tissue. It will checked in six months. There were no indications of it being cancer.
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I just had a biopsy two weeks ago because I had found lumps under the one nipple I got to keep (right nipple gone due to safe margins).The doctor called with the pathology report, scar tissue! Thank God! When do we ever stop worrying? He said it was a good call to do the biopsy since recurrence sometimes comes back in scar tissue.
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Bump.
Where are the Ladies who started this thread? I hope they are all well.
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new to this forum. Any ILBC/MBC warriors here? 18 months post dx without any surgery or radiation to.Wondering if mastectomy's are ever recommended in MBC or is it pretty much a write off and continue with Hormone Therapies and targeted meds?
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Hello, Kidzrn97 and welcome. Please join in on the stage iv forums if you like. Some threads are specific to ILC and most are mixed type. Where are your mets? Is it de novo or a recurrence? What treatment are you on? What interests or concerns do you have? There is quite a bit of discussion about surgery or not for mbc. If you want to fill out your diagnosis and treatment profile it will help us know how to direct you and respond to you.
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Didn't know where to post this but do you know that The International ILC Virtual Symposium is live this week?
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Hi Warriors, I am back with my third BC 🤯 this time is after a BMX in 2016. I thought the pea sized lump was fat necrosis as I have had 2 rounds of fat grafting. I was shocked when biopsy results came back as ILC. PET negative for METS.
I see the BS on the 30th
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Hi OG56,
Sorry you are dealing with a third BC. Screw this cancer.. Wishing you the best outcome
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Thank you for the Kindness! I asked the Onc if there was a prize for getting this a third time LOL 😆
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God bless you, it’s a tough journey that seems like it never ends. I’m so thankful for this website to know there are others like me that understand, encourage and support me in the “adventure “
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Happy New Year Ladies!
Last year, someone shared a video featuring Jason Aboudi Mouabbi, M.D., who discussed the efficacy of tamoxifen and exemestane for ILC. I currently take exemestane due to its milder side effects compared to letrozole. However, I want to ensure that I am using a medication that is truly effective. If anyone can find the video, kindly post it or provide information on where I can locate it.
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Hi Lily! Attached is the video that you may be looking for.
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Thank you so much. It is very useful since I have an appointment with MO this coming Monday.
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I have read some comments from Dr Mouabbi suggesting that there are clinical trials specifically for ILC. I'm based in Australia and can't find any current or recruiting. Can anyone point me in the right direction please?
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@pinkbird26 I know that clinicaltrials.gov is where they place clinical trials, but I believe the clinical trials he’s talking about are in other countries right now. I will look and come back to let you know.
Edit to add: You can find lobular specific clinical trials here.
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Hello @pinkbird26! This article on our main site might be of interest to you as well: How to Find a Clinical Trial
Best,The Mods
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Just feeling low before seeing the oncologist next week. I'm 4 years past a what was supposed to have been a prophylactic bilateral mastectomy - nope … bilateral invasive lobular. I'm just a little freaked out that after 4 years of the evil anastrozole, my oncologist is wanted me to stay on it longer than the original 5 year commitment. I'm fatigued and my hands ache so much that I'm retiring early from my job (I'm 63). Has anyone had the "extended adjuvant therapy" chat with their oncologist? Advice? I'm freaking out tonight about late recurrence and trying balance that with quality of life.
thanks for the support
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@loves_yosemite, welcome again to our community! We know it's so hard to be here, but we're glad you've found us. Hope you get responses from other members here soon. In the meantime, there's another popular thread called For Arimidex (Anastrozole) users, new, past, and ongoing that you might want to join and ask your question. Additionally, there's a topic for members newly diagnosed with a recurrence full of tons of advice and personal experiences that we are sure you can benefit from!
Hope this helps! Please come back to let us know how you're doing!
The Mods
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@loves_yosemite Is there any way you can switch to maybe Letrozole? I know it may cause the same issues, but maybe not. I’m sorry Anastrozole has been so hard.
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Thanks so much for responding. My oncologist believes Anastrozole to be superior, but I will bring it up with her. With all that you have been thru I should be reaching out to you. 💕 your fight has been extreme!
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@loves_yosemite That’s very sweet. As much of a shit show it took to get my diagnosis, I have a very slow-growing cancer that has responded to treatment, so I’m extremely grateful for that. The cancer treatment sometimes seems worse than the cancer itself, as you know. I’m currently on Orserdu, and my tumor markers have come down lower than they’ve been since 2016. I count on those to tell a story. I hope you can get some kind of relief.
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@loves_yosemite Congratualations for staying in anastrozole for so long. I am approching 5 years this year and I was told that I will continue exemestane for many years. ILC is slow growing and can return after many years. I was told that letrozole and anastrozole is more effective than exemestane but I was getting so sick of letrozole that he had to switch me to exemestane. I wonder if there is any research on how powerful these meds are for ILC. I hope we are not taking them just because it works 40% of cases in IDC.
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@lillyishere - I've been reading myself down that dark rabbit hole and yes, the "azoles" like letrozole and anastrozole have been seen to be more effective for ILC than other classes of AI. But these studies are still pretty small. Cheers to you to staying on any AI for 5 years… these are just so tough to take. Studies are saying that 7 years may be the sweet spot for anastrozole that "balances" side effect risks to disease free survival - I don't know if there is research on exemestane.
All I really know is that lobular cancer is a sneaky bi*ch and that AI is just miserable.
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Hello, I hope someone from here can answer my question.
So…this is about my mom, she just went through a single mastectomy for stage2A ILC(multifocal). There were two tumors, one was 23 mm and the second one was 10 mm.No lymph nodes involved, no LVI but PNI was found.
So far, no chimeotherapy or radiotherapy was discussed, only daily letrozole.
Is this an ok course of action? We were expected chimeotherapy and radiotherapy but nope.
Are there any chances that she we will be ok for the next 5 to 10 years?
She is ER 95%, PR 5%, HER2 negative( 1+)
Grade 2, ki-67 3 %, mitotic score 1.
Thamk you!
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I'm sorry to hear about your mom's diagnosis and so glad that she has you to go thru the experience with her. Lobular carcinoma research is way behind ductal carcinoma research so you may find differing opinions out there. Check out this link from the NIH website. They are suggesting maybe for radiation and probably not for chemo at this stage. I'm guessing that your mom is post menopausal, so Letrozole (or any of the aromatase inhibitors) is on the mark.
I wish you both the very best of health as you go thru this.
Janet
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@loves_yosemite thank you so so much.
Yep, she is menopausal, she is 63 years old.
So according to the link, chemo may not be recommended due to low ki-67 and no nodes involved. I am rly relieved. In fact I guess she will need radiotherapy for management of PNI… but we will see what the surgeon will say on the 1st of July.
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Please keep us posted, @domi26! And let us know if you have any other questions we and the greater BCO community can try to help you out with. ❤️
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Small wins are so beautiful.
Today my mom had a post surgery follow up with her surgeon. She also wanted a second opinion from another oncologist. It turned out that her surgeon is also an oncologist manager in Germany.
She had all the consults, she got the all clear post op and there was another nice moment. The surgeon gave my mom his second opinion and they discussed for about an hour on all her documents. It turns out that all she needs is Letrozole since the mastectomy site is “clear as water”.
It is so unreal here in Romania to stay with a doc and talk about every single detail.
I know it is a long road, but today we had a WIN!
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Hallo - hoping to connect with others here. Please give me a shout if I'm posting in the wrong place. You all sound amazing.
I found out yesterday that I have ILC. Right now it all feels as if it's happening to someone else. I was extraordinarily lucky; I went to my GP about a breast lump that turned out, on ultrasound, to be a harmless cyst. However the first doctor I saw at the hospital did a full examination 'just in case' and found a tiny lump that I'd never have discovered myself. I feel as if I've leaped across a waterfall and landed safely with my feet slightly damp. The tumor is less than a centimetre across, grade 2, hormone receptor positive, and HER2 negative. I think this is all good news. I have an MRI next week, which hopefully won't bring any nasty surprises, and surgery in September. My fingers are crossed for no chemotherapy.
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