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Topic: ILC Long Term Survivors

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Dec 4, 2011 07:12AM

NancyNY wrote:

Does anybody know people, or are you someone who has survived ILC long term, (more than 5  to 10 years) without a recurrence?  Please post!

I was diagnosed in 2004, and think I am fine, but, as I see from the boards, you can never be 100% sure.

Thanks!

Nancy 

Dx 5/18/2004, ILC, 2cm, Stage IIA, 0/4 nodes, ER+/PR+, HER2-
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Posts 91 - 99 (99 total)

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Jan 27, 2021 10:43PM KathyNSW wrote:

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


Dx 8/6/2008, DCIS/ILC, Left, Stage IIB, Grade 2, 1/12 nodes, ER+/PR+, HER2-
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Feb 4, 2021 06:38AM karen1956 wrote:

Yesterday, I joined the 15 year club!!!! 15 years of living, of birthdays, wedding anniversaries, watching my kids grow up. One Bat Mitzvah, 2 high school graduations, 2 university graduations, 1wedding, 3 young adults leave the nests. All of the other life cycle events. All things I am grateful for. Life always is full of challenges, but life if GOOD! Here's to the next 15 years.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Feb 4, 2021 07:40AM Numb wrote:

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.

Dx 2/15/2016, ILC, Right, 2cm, Stage IA, Grade 1, 0/1 nodes, ER-/PR-, HER2- Surgery Lumpectomy; Lymph node removal: Sentinel
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Feb 4, 2021 11:06AM KMom57 wrote:

So awesome to hear. Happy for you. And thanks for coming back to encourage the rest of us.

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/15/2020 Prophylactic ovary removal Surgery 5/18/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/31/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Feb 8, 2021 06:44AM Robyn_S wrote:

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


Age 46 @ Dx, BMX, FEC/T, Rads, Tamoxifen, Femara, DIEP 2012 ( the works!!) Dx 3/8/2011, ILC, 6cm+, Stage IIIA, Grade 1, 1/5 nodes, ER+/PR+, HER2-
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Feb 8, 2021 12:23PM KMom57 wrote:

Robyn_S, thank you so much for coming back and encouraging those of us in the earlier days of this diagnosis. It always gives me a shot of hope to hear from people like you. Wishing you the best of everything for the next ten.

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/15/2020 Prophylactic ovary removal Surgery 5/18/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/31/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Feb 14, 2021 05:08PM LoveLau wrote:

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

Dx 10/2016, LCIS/ILC, Right, 1cm, Stage IB, Grade 2, 1/24 nodes, ER+/PR-, HER2-
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Feb 16, 2021 12:16AM BCat40 wrote:

Kathy I recommend trying to find a good psychotherapist, especially one uses the cognitive behavior therapy technique. Also talk to a psychiatrist to see if meds might help you.

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/2/2020 Whole-breast: Breast
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Feb 17, 2021 12:58PM - edited Feb 17, 2021 01:12PM by Coffeeholic

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

Explanted Allergan 410s in 2019 Dx ILC, Left, 5cm, Stage IIB, Grade 1, 1/17 nodes, ER+/PR+, HER2+ (IHC) Surgery Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement

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