ILC Long Term Survivors
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Hello everyone,
Checking in as I do once in awhile. The summer makes me think of diagnosis and surgery, since I had both of those 16 years ago on July 27 and August 5. 16 years is a good long time NED and I hope it’s encouraging to those newly out. I know I looked for those survivor stories and held onto that hope. I’d like to extend kind thoughts to anyone experiencing anxiety and/or depression. I really fell off a cliff after diagnosis since I struggled with both before diagnosis (I didn’t even know it). I had a rough childhood and a sensitive disposition so a cancer diagnosis threw me into intense anxiety and a deep depression. Medication has helped, along with exercise and yoga. Being years out from diagnosis and treatment also make a difference. If you are going through anxiety, you are not bad or wrong. Please be kind and gentle with yourself and know it can get better. Since my diagnosis, surgery, chemo, and reconstruction I have seen my children graduate from high schol and college. I have travelled to Italy and Greece. I earned a BA in history in my 50s. Sadly, I ended up getting divorced, but even that change brought growth and fun into my life eventually with a new beau.
I work to manage anxiety and depression with medication, therapy, exercise, and self compassion.
I wish all of us health and contentment.
Catherine1 -
hi, all
I’ve been dx in 2008 with ILC, had double mastectomy surgery (my choice as I had it in right breast only), chemo and radiation. Was on Arimidex and Reclast for 7 years. Now I am stage IV with mets to liver, stomach and bones (dx in May 2024). On Kisqali, Letrozole and Prolia. My Onc is still researching all my genetics. Found some deletion/mutations. Looking forward to be here for awhile:)
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I was diagnosed in June 2024 and had a lumpectomy in July. Surgical pathology report showed ILC + cells that have ILDC. Also showed cancer in the sentinel node. Very small. Dr. having an oncotype DX test run. Won't have those results until late Aug. Recommending chemo if score is greater than 26. At diagnosis they recommended radiation and hormone therapy. How do you make these types of decisions? Weigh the pros and cons, increased life span, risk of recurrence?
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When I had it in 2008 I did an extensive research and learned that ILC has a tendency to spread to another breast and into the blood stream. That’s why I’ve elected double mastectomy, chemo, radiation and hormone therapy (I was and still am ER+, HER-). The reason doctors recommend aggressive treatment is that ILC is very tricky and doesn’t have 5 year survival curve. Mine came back 16 years later. But there were no CDK meds back then. Now they are looking at ILC as a unique subtype and working on the new meds. If you trust your doctors I would go with their recommendations based on the info they collect (grade, oncotype, genetic testing).
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ILC back after 16 years? This is crazy! I am so sorry laguna24 and I hope you will have this under control for a very long time. Unfortunately, still, there is no cure for this nasty disease. Did you have positive lymph nodes?
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Just had my 10 year anniversary and so grateful
When I was diagnosed in 2014 this forum was so helpful. So much information and support
I am grateful
Y’all take care of yourselves!
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@lillyishere hi, Lilly I had 5/20 lymph nodes involvement, 3.5 cm tumor in my right breast and was staged at IIIB. All my mammo were clear and my OBGYN missed the lump. I diagnosed myself, but it was too late.
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