ILC stage 2b, positive node...any 5-10+ year survivors?

My friend had stage 3A ILC and is out 10 years.

I hit my 14 year anniversary yesterday. I had a very crappy diagnosis. (see my stats below)

BTW, freaking out at one year out is COMPLETELY normal!

Hi,

I had a thread last year looking for ILC'ers who have been on the other side for a while. I don't know how to copy the link but it is in this forum and it is under the thread of Any long time survivor stories with ILC. (maybe 5 months ago..) Had some great responses. Love reading the positive stories and find it comforting. Look for it and bet you'll find more stories.

Hi.First time posting. This seems like a really helpful place. I found a lump two weeks ago that felt like a golf ball and showed up out of nowhere. Just diagnosed but will be getting more tests. Biopsy report....ILC, Pleomorphic type, provisional grade 2. ER positive(strong), PR positive (moderate). HER2 negative. In all my searching after radiologist told me what he thought it was, I never saw or looked up Pleomorphic. And now that the biopsy report is in, I'm bordering on freaking out. What are some good questions to ask (meeting my possible team tomorrow)? And how the heck does anyone make good choices about where to get the best treatment? I don't see a lot of current information about the pleomorphic type.

almost 10 years out-- had lumpectomy, chemo, radiation--- 5 years of AI's....

even had thyroid cancer 4 years ago---

but I feel great-- life is good.... everyone healthy!!!

After two years on tamoxifen, I was switched to letrozole (Femera) which I hated; I was confused, foggy, sad, achy, congested, and constantly having to pee (lol). Then I tried exemestane (Aromasin) which was a 100% improvement; I took it for 3 years, until my insurance changed and it was too expensive.

Now I'm on anastrozole (Arimidex) which I expect to take for another year. The SEs aren't too bad as long as I take it every other day rather than daily. I'm hoping to stop all meds at the 7 year mark.

When I was first diagnosed, I was told to expect to be on meds for a total of 5 years (split between tamox & AIs, due to my age). About two years ago, my onc said the recommendation had been changed to 10 years, but then, a year ago, more recent studies showed no additional benefit after 5 years. So...for now, we've settled on 5 years of AI's (after 2 of tamox), unless things change again.

I'm ready to be done with it all, and look forward to going off all of them (I also take Effexor for hot flashes). But that's just me & my unpopular opinion! lol

Edited to add: this is just what my MO told me, and I trust her opinion and education. Don't mean to imply this should be the protocol for everyone/anyone else.

I stopped taking AI's at the 5.5 year mark--- so about 4.5 year ago....

We can stop taking AIs at ANY time--it's our choice...but the most recent thinking is that if you are considered high risk, like I am, we are advised to stay on them longer than 5 years, more like 10, and further research may suggest a lifelong AI for some of us like me, who had + nodes, etc. (This according to my MO.)

I'm at about 7 years and hope that research doesn't find that a lifelong course of treatment is necessary. I'm really sick of taking Aromasin, frankly...

Claire in AZ

Diagnosed in October 2008. I'm in the home stretch for the 10-year mark.

Lpk29 - this is a really great thread. It is very encouraging and brings hope.I hope you don’t mind me asking the question of how many women stayed on tamoxifen and dealt with achiness the entire 5 years? Or how many had se’s that came and went the course of the 5 or more years? Thanks for all that reply and best wishes on your continued good health

I’m 5 years out and am off Aromasin. I just had my final visit with my MO yesterday and am feeling quite vulnerable, but it sure helps reading the success stories here! Hugs to everyone!