ILC Long Term Survivors

Hi Astrid and all,

I was 44 when diagnosed and yes Astrid 9 years is awesome and everyone who survived this horrid disease

We are amazing, and we have to be positive don’t we.

Take care everyone

Kathy xx

Thanks for posting Karen, love to hear about long term survivors. I have just had a mammogram and awaiting results. I will be 5 years if I get the all clear. Heres hoping. It is nice to think I could get 15 years, just like you.

it is so inspiring to read of others journeys. When I was first diagnosed, I found it so reassuring to read of long term survivors and now it is 10 years on for me and that is something I will never take for granted!

The prognosis seemed so grim back then..large multifocal tumours and nodal involvement... but no match for modern medicine!! I watch my health...exercise good diet and expect another 10 years to come ...we all have too much living to do!!

Take care & peace

Robyn

Hi,

I just finished 4 years. Still working on controlling anxiety. Can you give good ideas on how to do that. I tried lot of things including medication. I had BMX with no reconstruction. Get anxiety all the time. I tried everything. Today when I went for my walk I met a lady who I had walked with and she told me she had same diagnosis. She was so composed and I realized I was not. I want to accept the dx. and move on with my life but keep staying in depression land. I dont like it there. I do go swim and walk and cook but its just not enough to give me a life. Everything I do is a challenge. Like that lady, she was so.calm and relaxed why can't I be like that? Can any of you give me good tips? I'm going swimming cause it calms me down when I'm in the water but other than that I don't feel too great. I appreciate that most here are happy and have conquered their fears if they had them. I want to do that too. Help me figure out what I'm doing wrong.

Thanks

Kathy

Kathy,

I'm 6 years out and I have to admit I had anxiety and depression before cancer, so it didn't just go away after my diagnosis. It's been a real struggle for me not just with cancer, but also with after effects of reconstruction. I had breast implant illness and didn't know it. I explanted in 2019, now am dealing with constant monitoring due to fat necrosis. I have lost my trust with my doctors. So that's hard to deal with.

I agree that a GOOD psychologist can help, but it's hard to find someone who understands our issues as survivors. I really think that the medical establishment should do more to help survivors. We aren't "done" being patients when our cancer goes away. It's really a missed opportunity, but I know that it's an issue with getting insurance companies to pay. If there's an issue to protest, that certainly is one. But definelty talk to your oncologist if you still see one. Some clinics have supportive services that may be covered by insurance.

Recovery is different for everyone. Medications don't work for me either. I can say that staying busy with things you love, doing hobbies and staying physically active helps. Early on I joined an online support group to connect with other survivors helped me a lot. There are some great organizations out there. Gilda's Club (renamed Cancer Support Community) if available in your area, offers some amazing programs, although COVID put a stop to in-person classes. Meditation, yoga is awesome. Now that I have retired, I rediscovered a love of reading. There's no easy answer. It may be a combination of things you do to feel better. Talk therapy is one that I recommend and it can't hurt, that's for sure! I hope you find your peace. Please check back with us and let us know how you're doing.

~M

Thank you for giving us hope Matic22. I wish your Mom many happy years to come.

Regards from snowy Northeast of USA.

Hi all! My mom is a 22+ year survivor of ILC. She was stage 3c and had a 7 cm tumour. She also had 13 positive lymph nodes. She has never had a reoccurrence or metastasis. (She did have a bilateral mastectomy)

I remember having a convo with her while she was going through treatment. I asked if she had 10 years and she said “probably not”. She said she’d be lucky to survive 5 years. And here she is! You just never know how your body will respond to treatment. Keep the faith

Matic, So nice to hear from you, and so happy to hear your Mom continues to do well. I am coming up on my 12 year anniversary of diagnosis with ILC. So far so good.

DutchieGirl, thank you for sharing such good news.

Thanks Antonia...it’s great to see another ILC Triple + surviving so long...I’m only 15 months from Surgery so can’t wait to even say 5 years

18 years May 8, 2021

Have had no recurrences and see my doctor every 6 months for blood work and a CT scan every year. DMX with reconstruction; Diagnosed on May 8, 2003 at the age of 47.

Making a rare check-in to report that I am now 10 years out from a stage 3B DX and still here, and as far as I know cancer-free.

I am 5 years out pleomorphic ILC and 9 years out IDC. The diagnosis of pleomorphic was scary, but I'm still here to tell the tale!

I'm just checking in because in a few days I will be 8 years from DX.

9 years strong

Started with lots but still kicken

Thank you JKL2017 I found it so helpful to read about others that were living long lives truly gave me so much hope

and yes my nest 9 will be amazing !!!