Team ILC Warriors

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  • SFOgirl
    SFOgirl Member Posts: 2
    edited June 2018

    Hi!!!

    You are so welcome. I know it's so hard to know for sure if you are making the right decisions. You just have to take what your drs say AND do your own research and make the best decisions for you. I think in this case for you that you absolutely did. You did the BMX and you said your surgeon took only one node at surgery? I’m not sure what your drs will want you to do scan wise but I believe if you did the BMX and you did radiation to the lymph node area you are good. They got all the tissue on the breast so good there and they radiated your underarm and killed everything there. Remember just because a cell gets out doesn’t mean it’s going to set up shop somewhere. Most die and that’s why it’s important for you to keep your immune system as healthy as possible. Eat good, limit alcohol, rest and exercise. You’re immune system is your best weapon!! I know it’s hard not to think about everyday but I read somewhere a woman who was a breast cancer survivor said she takes it day by day.....she says “TODAY I don’t have to worry about BC”

    TODAY Dodgerick you don’t have to worry about BC!! Make it a great one!!! Hugs to you!!

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  • OTY
    OTY Member Posts: 13
    edited July 2018

    Interesting research out of ICR . 90 % of ILC express loss of e cadherin image

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  • OTY
    OTY Member Posts: 13
    edited July 2018

    The article from ICR to which explains the above slide .

    http://cancerdiscovery.aacrjournals.org/content/8/4/498

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  • Momine
    Momine Member Posts: 7,859
    edited July 2018

    OTY, thanks for posting that. Yes, mine was e-cadherin negative. Would be great if they could knock it out that way.

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  • Dodgerick
    Dodgerick Member Posts: 72
    edited July 2018

    SFOgirl, Thank you for your words of encouragement! Sometimes I still second guess the decision of NO CHEMO, but hopefully my doctors will stay on top all my testing and if I ever have to fight the cancer battle again chemo is in the tool chest. I am so glad that I was able to find this thread, thank you for your support! “TODAY I don’t have to worry about BC!” Thanks for sharing that with me too! Hugs to youand thanks for reaching out!

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  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2018

    My cancer tumors were tested looking for e-cadherin, one was negative the other highly positive. On my pathology report that is how they determined one ilc and one idc.

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  • Galsal
    Galsal Member Posts: 1,886
    edited July 2018

    Drat. It's official. Need a total hysterectomy because of the cysts. Praying it can be done vaginally to only need One cut into the low abdominal mesh from the hernia repair. Since leaving at end of August, not sure I can get it done soon enough for an entire recovery to handle a cross-country road trip. If not, then it would likely be in late Oct or Nov based on family availability to be in Oregon with me for the surgery and recovery. Not the type of operation to be dealing with dogs and chickens immediately after. Thankfully I'll be staying on the main floor instead of upstairs then.

    July 9th is the repeat chest ct scan about the sternum lesion.

    Sorry for TMI, two things at once just makes me more anxious about it all than usual.


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  • Lily55
    Lily55 Member Posts: 3,534
    edited July 2018

    Dodgerick you can see my stats below. I am 6 years out and refused chemo......I have no regrets at all and don´t second guess myself about that......we all have more power than we think........a cancer diagnosis is very disempowering and we have to dig deep to connect to our innate ability to heal if we find the right ingredients.......

    My husband was diagnosed with a significant aggressive brain tumour in March....he had a recent scan and it has totally disappeared......his treatment was very limited palliative radiotherapy and cannabis oil with high THC,.........doctors are astounded.......google endo cannabinoid system for more info...........

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  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2018

    Lily55, wonderful news.

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  • Dodgerick
    Dodgerick Member Posts: 72
    edited July 2018

    lily55, thank you for posting this! It is so important for me to hear from someone else out there with lymph node involvement who didn't have chemotherapy! I really was beginning to think I was the first and only! Thank you so very much! Thanks also for sharing the amazing story about your husband! Wishing you and your husband all the best! God bless

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  • Vikinggrl
    Vikinggrl Member Posts: 6
    edited July 2018

    You were smart to ask for a biopsy. I had a lump in 2010 that was dismissed as a fluid filled cyst. Then 8 years later this may it got painful and bruised and of course it turned out to be ILC with a now very large tumor!

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2018

    Vikinggrl, sorry to hear your experience! Have you started treatment?

    And Lily55, Fabulous news!!!

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  • Licata519
    Licata519 Member Posts: 57
    edited September 2018

    Dodgerick, I had lymph node involvement and opted out of chemotherapy. The more I read about my circumstance, the more comfortable I am with my decision.

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  • Dodgerick
    Dodgerick Member Posts: 72
    edited September 2018

    Licata519, thank you for reaching out and sharing your ILC experience. It's so reassuring to hear from other survivors who have NOT had chemotherapy (I was really stressing just a couple of months ago because everyone I knew of with breast cancer, was going through chemotherapy....I am a worrier)! By the way....congratulations on 2 years NED and best wishes for a long healthy life!

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  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2018

    6 years out and was stage 3 ILC, refused chemo.......happy with my decision......

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  • dakrock
    dakrock Member Posts: 99
    edited September 2018

    You should go to the ILC forum    It is very helpful  

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  • Dreya711
    Dreya711 Member Posts: 12
    edited September 2018

    I just received my ILC dx two days ago. I was dx with LCIS a year ago and went in for my screening... I never expected this. I am so sad and scared right now. I had an MRI yesterday morning and will meet with my breast surgeon Tuesday morning.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2018

    Dear Dreya711,

    Welcome to the BCO community. We are so sorry for your ILC diagnosis but so glad that you reached out to our members. Please keep us posted especially after you meet with your surgeon on Tuesday. Let us know how we can best support you through this. We hope that you will stay connected here as there is much support and shared information that can be so helpful from the experiences of our members. The Mods

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  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2018

    Hi Dreya

    Six and a half year survivor of Stage 3 ILC here (and I refused chemo) - I can assure you this is the very worst time as your brain goes mad with all the not knowing

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  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2018

    Lily, are you still taking exemestane? I also didn't do the recommended chemo but I have been off AI drugs for 3 years now. I am 7 years out.

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  • NoteRed
    NoteRed Member Posts: 86
    edited September 2018

    I had chemo with an ILC diagnosis. I dont really know if thats good or bad. but doctor told me so about the 7 positive nodes I had.

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  • Janila03
    Janila03 Member Posts: 14
    edited September 2018

    Hello fellow warriors, I am so glad I found this thread. It's good to see so many of you still posting even after finishing treatment. It gives me hope to hear all your positive stories and I thank you all for sharing. I was dx last Dec with ILC in the right breast and LCIS in the Left. I opted for the double mastectomy for peace of mind. Both my surgeon and oncologist recommended chemo mainly due to the Oncotype score of 25. I have been on monthly lupron injections and anastrozole. I'm also having my ovaries removed next month. I'm doing everything in my power to always be one step ahead of this disease . My biggest complaint right now is that my right knee has been swollen since I started these cocktail of drugs in June. I've tried heat, ice, elevation, rubs. There's really not much pain as long as I have an ace bandage on, it's mainly the swelling and it is uncomfortable. I've always had knee issues but never for this long. Will be meeting my team of Dr's next week for my 3 month appointment and I also made an appointment to see an orthopedic surgeon. Has anyone been on lupron and anastrozole and had similar problems with joints?

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  • MaddieBrie1
    MaddieBrie1 Member Posts: 122
    edited September 2018

    Read all posts from beginning, whew. Mammos sporadic since 2007, all clean. Found lump during self exam in April 2018 at 41 y.o. Mammo, MRI, 3d MRI, ultrasounds, multiple biopsies breast and lymph node on L. Was initially dx 11b as IDC, lymph node pos, ER/PR pos, Her2 neg. Then chgd on pathology from sentinal nodes biopsy and path from L breast mastectomy tissue 8/7 to ILC. No genetic components from Invitae genetic testing of 9-12 genes. Met w PS, MO, RO and BS prior to surgeries. Had TE placement same as unimastectomy surgery. 3 session w physical therapist improved range of motion before surgery today. Just home from axillary lymph node dissection. Long road ahead. DH is taking phone and tucking me into bed now. Thanks for all the info. Will touch in again later. MaddieBrie1

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  • wonderwoman71
    wonderwoman71 Member Posts: 2
    edited September 2018

    New to this post. 46 y.o. Dx with ILC and underwent BMX with placement of TE 9/5/18,   - one of which I think is placed too low- ER +, PR neg, HER neg, nodes 0/4, IIA.  Await oncotype results with MO next week. I have a couple of questions about reconstruction and monitoring for cancer recurrence.  I am not sure if I made the right choice to place TE.  

    1) What is the follow-up regime post treatment? 

    2) Given that ILC is so "sneaky" , does anyone have any recommendations regarding reconstruction - implants vs flap - or doing nothing? 

    Thank you for sharing your stories.

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  • dakrock
    dakrock Member Posts: 99
    edited September 2018

    Hi Wonderwoman

    I too was diagnosed with ILC and had a mastectomy right breast on February 23, 2018.   I had immediate reconstruction with a nipple sparing implant.  I have had no problems at all.  I didn't need extenders or anything.  They placed the implant on top of my chest muscle and so far so good.   I am on Letrozole and will be for at least 7 years.   I see my surgeon In November and will also have a mammogram of my left breast at that time.  I'm not sure why because mamos really do not show ILC.   Also I have developed a mark on my face which I just had removed by a plastic surgeon.  She thinks it may be melanoma.  I'm really worried.    Good luck to you and whatever decision you make will be the right one for you.  Keep us posted.



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  • stellamaris
    stellamaris Member Posts: 384
    edited September 2018

    i also did not have chemO or radiation. I am on AI only, and i am almost 3 years out (from start of AI). My oncotype was 27, and i am feeling fine with minimal side effects.

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  • stellamaris
    stellamaris Member Posts: 384
    edited September 2018

    Notered, i think it is pretty standard to have chemo with positive nodes, even if it is ILC.

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  • Galsal
    Galsal Member Posts: 1,886
    edited November 2019

    Happy Halloween

    Unfortunately, I and my PCP feel a small lump in the outer side bra area of the same breast which had ILC. So will be having another breast ultrasound. The small part I feel is like the end of a pencil eraser. The area PCP felt is 5-6cm of more than lump. Yikes! Prayerful it's merely scar tissue from all the breast surgeries and drains.

    This is new and different to me since no one could feel the 1.9cm ILC mass.

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  • HersheyKiss
    HersheyKiss Member Posts: 550
    edited November 2019

    Sal, I'm so glad that your doctor is ordering an ultrasound for you and hope the results are benign. Please let us know how things go.

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  • Galsal
    Galsal Member Posts: 1,886
    edited November 2019

    Thanks, HersheyKiss. Truly!

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