ILC Long Term Survivors

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 !!

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

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!

Congratualtions lauri.

Gracejoy, I have heard similar to what you are saying. ILC recurrence increases every year, even after 10 years.

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

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?

Thank you so much ladies for hope and encouragement! I am upset now, but your experience gives me strength.

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.

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❤️💕

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

I know someone who has survived ILC for 22.5 years without a recurrence. Amazing

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.