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

lpk29

Hi, a lot of the posts I’m reading are a couple of years old. Wanted to hear from survivors as I am freaking out about having bc. I am one year out from dx

Anonymous

Here's a 5+ year survivor.

bluepearl

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

lpk29

yay!! Thank you! I’ve been feeling so down lately. It’s good to hear some positivity

IAmElaine

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!

lpk29

IamElaine I’m so happy to see your post!! Congrats on 14 years!! I have been having a really hard time the past few weeks. This brightened my night!

beach2beach

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.

lpk29

ok, thanks! I’m still getting used to navigating through this site. It’s little awkward

mojoputts

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.

GeorgiaRai

Six years ago this month I was about halfway through chemo. Hang in there!

momand2kids

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!!!

lpk29

mojoputts, I would do all the research you can and write all of your questions down. Get multiple opinions. I’m guessing you have an MRI next?

lpk29

momand2kids glad to hear it!! Did you stop taking hormone blockers? We’re you freaked out?

lpk29

georgiarae, that’s awesome! Are you still on hormone blockers? What do you take

GeorgiaRai

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.

lpk29

so you can stop at 7 years and take nothing after that? I’m I’ve been off TAM for two weeks for exchange surgery and I can’t wait to go back on. I don’t feel comfortable without it

GeorgiaRai

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.

Robyn_S

I have just passed my 7 year mark from diagnosis and feel as though it is really behind me now. The diagnosis was serious and I had no hesitation in using all the treatments box, chemo, rads, and tamoxifen followed by Femara.

Now...Feeling fantastic and have been off Femara for six months now after a discussion with my MO. He's suggested a trial to see how I felt without the aromatase inhibitors...and I feel so much better ...younger..that my QOL has improved. Feel like I have shrugged off the old lady feeling. I remember what you are going through now...so I can say that you will get through the anxiety and a day will come that you will be yourself again. Keep living with an eye to the future and allow yourself time to recover from the treatment. No time for cancer when you are busy enjoying life!

Wishing you a smooth journey

momand2kids

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

Cloudygarden

19 years. I was diagnosed with lobular invasive breast cancer in1999, new tumor found in opposite breast in 2000, relapsed local, regional in 2013. I am doing fairly well enjoying life & family, with some joint & bone pain & issues. No progression of disease since 2013. I wish you well. Cloudy

Anonymous

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

erinm216

5 years in two months!

Texas357

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

lpk29

texas357, congrats on your 10 year anniversary this year! Happy to hear it!!

Humblepeace

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

lpk29

I’ve been on TAM for almost one year and I’m not achy anymore.

bc101

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!

lpk29

I want to stay on something forever, lol. I’m currently switching from TAM to an AI. The TAM was thickening my uterine lining