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.
Catherine3 -
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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Hi Laguna. I was diagnosed the same year as you, 2008. My last mammogram shows micro calcifications in the same breast. I am having a biopsy tomorrow to see what's going on. I did not opt for a mastectomy as the area was so small and I had no positive nodes. I had radiation and the cosmetic outcome was not good. In hindsight, I wish I had the mastectomy with an implant. After 16 years, it came as a big shock to me to be facing this again. I am so sorry to hear about what you are going through now. I wish you the best results with the medication you are taking now, dear lady.
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@charlynn1952 - Welcome to our community. We're sorry that you have to be here and worried again about your biopsy results, but glad you found us and decided to reach out. If you mention Laguna by typing @laguna24, she’ll likely receive a notification letting her know you’ve reached out, which might help her see your post more quickly.
We’re sending positive thoughts for the best possible results tomorrow. Whenever you need understanding and support, you are not alone here.
Looking forward to hearing more from you soon,
The Mods
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Thanks, Mods. I got through it and now wait for results. They said 5 business days so I will try not to think about it over the weekend. I volunteer with a cat shelter and have been doing that since 2008. It really helps me feel like I am making a difference in the world. 💕
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@charlynn1952 sorry for the delayed response. I am on few sites now including specific for ILC group on Facebook. I am learning for others how to deal with it and grateful for any support and good advice. Happy Thanksgiving and my personal Thank You to you.
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I have been called back in on December 13th (Friday the 13th) for another biopsy. No other details were given to me. I forgot to mention that I had a contrast-enhanced mammogram before they did my biopsy on November 28th. Has anyone else had that type of mammogram? I had never heard of it before now. In addition to microcalifications, there was another area that they wanted to check that did not show up on my diagnostic mammogram back on November 15th. I can only assume that is the reason for the second biopsy.
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