ILC Long Term Survivors
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Hi anemome2,
Welcome to BCO. We have some information on Adding Verzenio to Hormonal Therapy After Surgery for Early-Stage Breast Cancer With High Risk of Recurrence Reduces That Recurrence Risk but not necessarily on high risk. Here is the official site from the manufacturers Verzenio® (abemaciclib): FDA Approval and Indication however there may be some trials being done.
Looking forward to hearing from others, and more details form your experience.
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Hi, Just adding my longevity with ILC to this list- 20 years! Although I did go metastatic 3 years after initial diagnosis (Tamoxifen was not good for me) Femara kept me NED for 14 years! I responded well to Ibrance/Faslodex when mets reappeared in my Liver, then have responded well with Xeloda after it appeared on intestine. ILC can be very tricky. but luckily it is slow growing. My CA15-3 tumor markers helped me find my early single met and have helped me monitor trouble until recently. New chapter now, nothing showing on scans but high markers. I've been around so long I'm lucky I have a chance to benefit from the better treatments that have been developed. Good Luck All !!
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Thank you NinaCA. I wish you many, many years ahead of you.
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Ten years ago this week, I had to tell my 4 kids (ages 16 - 27 at the time) that I'd been diagnosed with ILC. I was Stage 3a, visibly positive nodes, & a tumor my surgeon couldn't even measure on the MRI; neoadjuvant chemo was needed to get it to a size she could remove.
It took a while to stop worrying that everything was a sign of recurrence, but only once did something bother me longer than the "2 week" guideline. (A follow-up MRI showed that was nothing.) I actually always looked forward to my monthly (and then less frequent) check-ups and scans because, to me, they signaled that everything that had worried me up until then was a "false alarm" & I was able to quit being so afraid.
I hope to be done with oncology visits, AIs and Boniva early next year.
Here's to my ten years,, and wishing the same - and more - for each of you!
Rachel
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Congratulations Rachel, very happy for you to make it to 10 years without any recurrence.
My situation is very similar to yours. I don’t want to discourage you or anybody else but my medical oncologist who is into research, tells me lobular behaves different from ductal breast cancer. He says if LCI doesn’t come back in 5 years then it might come back after 10 years. So please continue seeing your MO as you did thus far. BTW my MO says we don’t need to take AI after 7 years because benefits of taking it are there already for years to come.
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Thank you, Gracejoy! I do whatever my oncologist tells me; since ILC is still a threat long term, she may keep me on an annual check-up schedule. Her protocols have changed several times during my treatment - going from 2 years of Tamoxifen + 3 years of AIs, to 2 + 5, to basically indefinite since I tolerate it well. So who knows what the coming years will bring!
Best wishes to you!
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Made it to 15 years! Took anastrozole for 10 years with minimal SE's.
Unfortunately, now Stage IV at 15-1/2 years but MO says to hope for many more years.
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Congratualtions lauri.
Gracejoy, I have heard similar to what you are saying. ILC recurrence increases every year, even after 10 years.
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I hit my 17th year last March so am looking forward to 18 years in a few months!
I hardly ever check in here anymore but was looking for someone I used to know that posted here so here I am!
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I am so happy for you. You are a great encouragement for us. I wish you many more years in good health.
All the Best
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Sweet 16💕. 02/03/06 I heard those dreaded words that changed my life forever! My DH found BCO soon after and it was my lifeline through chemo and radiation. I’ve made lifelong friends here on BCO. Thankfully I’m here living life. I’ve seem by children grow up into wonderful adults. High school graduations, college graduation, 1 wedding and so much more. 16 more years with my BFF, my amazing husband who is truly my co-survivor.
There is life after breast cancer. Hugs to all who need them.
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Congratulations karen1956! Thank you for giving us hope.
Do you mind if I ask a couple of questions? How many positive nodes did you have? What type of AI have you been taken and for how long?
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Last September was 11 years since my diagnosis. Things were not easy during that time.
My Husband was diagnosed with a rare cancer while I was still in treatment and was terminal from the start. It was tough taking care of my husband, while recovering myself. What helped me recover my equilibrium were my children and my wonderful grandchildren, who are the joy of my life - two of my grandkids were born shortly after my diagnosis and two after my Husband’s death. They had kept me busy, until Covid got in the way.
I'm still NED and enjoy the life and my family. The fear of recurrence remains somewhere at the back of my mind, but I seldom think about it. I just take one day a the time
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Thank you so much ladies for hope and encouragement! I am upset now, but your experience gives me strength.
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This is my first post, and you give me so much hope. Antonia1, you are the first person I find with my diagnosis of ILC and her2 also. My dr says that we are hard to find so there is no data for ILC + her2. Reading that you are doing well after 11 years made my day
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Hi, MikaMika: I understand you are upset now, we all went through this, it will be fine and you will move on with your life very soon.
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too tricky— I was just scrolling through and realized you and I had a diagnosis on the same exact day! I hope you’re doing well. I have had all the things and now just awaiting exchange surgery along with taking Tamoxifen.
Hugs sent to you today!
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Hi I am now 6 years since completed treatment. I still have anxiety, I’d like to get rid of it. I am in remission.
I think my doctors were not positive and I have not let it go although I tried. I have psychiatrist who gave me lots of meds which didn’t work and a psychologist who is you had beautiful but keeps telling me I’m doing great.
Anyone who was able to come up with a way to stop the anxiety and just be happy? Thsnk you❤️💕
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6 years without treatment you are not in remission. Recurrence could have shown up by now and if you have 6 years without recurrence, you are cured. What are you going to do after 20 years, still worry?
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I am struggling today. I was deemed cancer free after surgery in November of 2021. I still get anxious. Every little ache and pain causes anxiety. I try not to be that way. I believe I’m cured. My dr even told me I have an 85% chance right now that I will never see this again. I guess PTSD will be around for a little while.
So thankful to be able to come on here and read long term survivor stories.
Hugs to all
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LoverofJesus, I’m sorry you’re struggling. No matter the stage, this crap is always there once we are diagnosed. I hope you can find some peace, but when I feel sad or anxious, I let myself feel it. This is not an easy road. I’m sending hugs.
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I know someone who has survived ILC for 22.5 years without a recurrence. Amazing
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Veeder14,
That's certainly great to read!
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I just passed nine years with six of those nine with no treatment because it was a missed diagnosis. October will be four years ago that I started having stomach symptoms and was diagnosed with spread to the stomach. I’m amazed and grateful I’m still here.
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hi Lilly, yes you are right 6 years of worry and anxiety. I do think about what happens after a few more years. I get anxious each morning, go out for a walk, back at home want to relax but have the anxiety, have tried reading self help books, seeing psyc etc breathing etc. I still have the anxiety. I would like to see more positive info. My life is too sad, I get a back ache or leg ache or a headache and that brings the pain back. In the morning I feel very anxious at night feel much better. Share your secret with me. Let me know how to conquer the fear. Thank you so much.
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HI all
Just had my 14 year checkup which was clear--- hopefully bodes well for the future!
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Thank you for posting momand2kids. Congratualations!
May I ask you how long have you used femara? Have you used any other medications or supplements?
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Hi
What was your treatment plan? As I am in the process of making mine now.
Stage IIB (pT3(m), pN2a, cM0, G3, ER+, PR+, HER2-)
I have traces of pleomorphic in each of the tumors which is why I had a mastectomy.
Thank you for sharing!
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Just passed 9 years! I took Femara for 5 years. MO said no need to take longer, it wouldn’t prolong my life. I didn’t realize that your risk of recurrence/mets went up each year?? 🤔 But was aware that ILC is “sneaky “. Best to all and Merry Christmas.
Robin
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