Survivors----please post how you are doing!

MamaM
MamaM Member Posts: 80
edited November 2017 in ILC (Invasive Lobular Carcinoma)

I would love to have a place to go to see survivors. I know many stop posting but it helps us newly diagnosed & going through the scary beginning phase!

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  • Momine
    Momine Member Posts: 7,859
    edited December 2014

    Mama, I don't like to think of myself as a "survivor," but I am living and living very well for the time being and that, for me, is the important thing.

    I was DXed 3.5 years ago, as you can see in my siggy. I got to try ALL the rides in the park, in terms of treatment. I got a big hat and walked my dogs in the park early in the morning during chemo. In a way, I think that was a big part of seeing me through the whole ordeal. I made a conscious and determined effort to enjoy. On the days I felt well (which were many actually), I made my DH take me out, went and saw friends, bought silly clothes or whatever.

    My cancer was pretty serious and it may still come back one day, but I really am at the point now where it is not in the forefront of my mind. I do exercise and keep to a fairly healthy diet. I take my AI every day like a good girl and see my docs regularly. But really, life is good.

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  • kar123
    kar123 Member Posts: 273
    edited December 2014

    4 years here and hanging in there! Go to the 5+ and 10+ threads in Stage III. Lots of great stories there!


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  • vlnrph
    vlnrph Member Posts: 1,632
    edited December 2014

    Approaching the 4 year mark, I've remained attached to this site due to ongoing lymphedema. If it weren't for the LE, I could almost forget that I'm a cancer patient. Despite my swollen arm & hand, I do most of what I used to - we now hire people to perform heavy labor but probably would have started to do that anyway...

    I did tell one doctor at a seminar that I would not consider myself a "survivor" until I died of something else!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2014

    my mom had ILC (stage 2) many years ago with lumpectomy, radiation, ALND, tamoxifen and is doing well after 28 years without any recurrence! I hope that can give hope to those newly diagnosed.

    anne

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  • lisa137
    lisa137 Member Posts: 569
    edited December 2014

    I'm only a year out from my surgery, my chemo ended March 31st of this year, and radiation ended in June of this year. I had a full hysterectomy in September.

    I'm doing great! My hair is crazy and curly, but there's a lot of it, and I'm enjoying life.

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  • mary625
    mary625 Member Posts: 1,056
    edited December 2014

    3 years 3 months and doing okay.

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  • SharonMH
    SharonMH Member Posts: 353
    edited December 2014


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  • SharonMH
    SharonMH Member Posts: 353
    edited December 2014

    Hi, Opps, I just lost my post. Guess I am not good at all of these computer things. But I wanted to say I am doing quite well. I am just over 5 years out. I feel pretty good and life is treating me well. SharonMH

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  • ck55
    ck55 Member Posts: 346
    edited December 2014


    I just passed my 8 year mark in Nov. Huge tumor and 2 nodes+. Doing well.

    Have faith. You will get there!!

    Cyndi

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2014

    I passed my ten year mark last month.  I had a particularly nasty diagnosis and am so thankful to be here and doing very well.  Hang in there!

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  • Annette_U
    Annette_U Member Posts: 111
    edited December 2014

    Jillian - Congrats on 10 years…you give us all hope. CK - Amazing! and thanks for posting everyone, we love to hear long term survivor stories. Thank you all.

    Annie

    almost 2 years out

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited December 2014

    6 years-- doing great.... life continues and is even better than before--- we got a dog, bought a second house, took a few more trips--- kids are growing up-- we keep working. I think if I could say one thing that has really become a priority is my relationships with my family, friends, colleagues. I don't waste any time any more on relationships that are unhealthy for me. very freeing!!!!


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  • JohnSmith
    JohnSmith Member Posts: 651
    edited December 2014

    Thanks for putting this thread together. I've only been around for less than a year, as my wife was diagnosed in April 2014. She is doing fine and slated for exchange surgery this week. :)

    Feel free to PM me with this off topic query, but what ILC specific questions do you ask your oncologist when you meet?

    I realize everyone's situation is unique, but I assume you inquiry about the status of ILC targeted therapies. I find it fascinating that there is very little new ILC research when it's clear from SABCS and other news sources that lobular is increasingly looked at as significantly different in its mutational spectrum than Ductal and other subtypes.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    Jillian777,

    Thanks for posting your good news. We're delighted to hear you are doing well.

    We want to send you big hugs and our best wishes

    From the mods

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  • cheshire84
    cheshire84 Member Posts: 20
    edited December 2014

    Thank you! I really needed to see this today. My mom had that same diagnosis and she is having her first mammogram today after finishing treatment and I am a nervous wreck!

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  • Little-G
    Little-G Member Posts: 647
    edited December 2014

    I don't post much, but I know when I was first dx I was also wanting to know if people were still doing well with this disease.  Going on 9 years now.  Back then I was so afraid I would not see my kids grow up.  And now they are.  You don't forget about the cancer, and different tests go on, and different symptoms go on, and doctors appointments.  Nothing is as it was.  But I am still here and doing pretty good.  I agree with momand2kids, I don't bother myself with relationships that are not healthy and indeed, it is freeing!  Best of luck to all of us.

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  • Lucybell
    Lucybell Member Posts: 20
    edited December 2014

    4 yrs 9 mos for me.  I have some fatigue cause by Tamoxifen. Other than that, doing great!

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  • Mgriffiths12
    Mgriffiths12 Member Posts: 22
    edited December 2014

    I'd love to know as well as newly diagnosed

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  • Mgriffiths12
    Mgriffiths12 Member Posts: 22
    edited December 2014

    that's a really amazing story to share


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  • SexyC430
    SexyC430 Member Posts: 4
    edited December 2014

    Since I was diagnosed back in May of this year with ILC I can honestly say I feel better now than when I was in chemo. I know I have a long road to travel but by reading everyone's comments I know I have many more years and a mission I need to fulfill.

    Thanks for having this area so we can share and read other survivors words of encouragement.


    Keep Your Faith turned up High and Negative thoughts and people turned off! CPR 2014 Cindy Smith-Jordan

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2014

    I also believe ILC appears to be a very different subtype of breast cancer according to the research I did. After my diagnosis, I was able to have helpful discussions with my medical oncologist and surgical oncologist about invasive lobular and how it is likely to respond to different treatments. In the end, with an Oncotype score of 20, I decided against chemo, especially because I have ILC. I am hormone positive so I went ahead with hormone therapy (Femara). Best of luck to you in your journey.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2014

    Mama,

    It's been a rough road. I finished chemo one year ago, & then did the 6 weeks of daily radiation. Last Xmas, I could not get out of the recliner.

    I have always been active, that really helped, getting back to normal. I hope your treatments are doable.

    Important to remember that this is a time to be selfish, you take care of yourself first, be kind to yourself. Most of us are always trying to take care of everyone else.

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  • DebbieNinja
    DebbieNinja Member Posts: 18
    edited December 2014

    I was diagnosed just over 2 years ago. I completed chemotherapy in Feb. 2013. I am finally starting to feel "good" again. It has been a long road. I hesitate to say that I feel normal again...because I still do not feel like my old self. I have some lingering issues with neuropathy in my feet, and some issues with reconstruction that I have been dealing with.

    I am just so happy to finally feel like the worse is behind me and it makes me so happy to read stories of others who are doing so well!

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2014

    I am doing OK taking a break from exemestane. I am a little over 3 years out. I had 2 tumors one ILC and IDC.

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  • CarolinaCarol
    CarolinaCarol Member Posts: 2
    edited December 2014

    I'm a new survivor. Diagnosed June 11, 2014 Much to my surprise I reviewed my pathology report and realized I'm ILC with focal ductal features. It was originally stated as Invasive Mammary Carcinoma. So I'm just now doing research on this type. Thank you for all your posts.

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited December 2014
    Hi. I remember how scary a new dx was and am popping back in to offer good news. Just had my yearly mammogram; all clear! (clean MRI six months ago.) Sat in the waiting room next to a woman who had had a unimx, like me, 25 years ago! Went to my mammogram alone for the first time since dx. Didn't need to sit in a dark room and shake for a week beforehand. Was still nervous, of course, I don't think that will ever leave any of us, especially those of us who had no external signs and were dx by mammograms. But I was able to breathe in that waiting room. I know that BC can reappear at any time, but I am living my life (better in many ways since dx) and no longer think about BC as much. I haven't done recon (didn't do it immediately and now have just gotten used to myself this way and am grateful for one less surgery) and take Femara, so I do have daily reminders, but I've gotten used to the new me and am just grateful and forging onward. I spent a long time being terrified, so don't beat yourselves up if you're not 'getting over it' as fast as everyone around you might think you should. But changing things I could control (adopting more healthy lifestyle) has helped. Good to be proactive and you really do feel better. Most important thing for me though, has been to try to dwell on the positive. Side effects of femara (in my case theyve lessened with time) are a reminder of a wonderful drug that helps stave off recurrence. Why shouldn't I be one of those long term survivors? It is, after all, as possible as not. Miracles happen all around us. Each day is my personal mini miracle.
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  • Momine
    Momine Member Posts: 7,859
    edited December 2014

    Holeinone, I completely agree on staying active and being selfish. For me those often go hand in hand, by the way: "Sorry, hon, going to the gym, see you in a couple of hours."

    There is proper evidence that physical activity can be helpful, both in easing SEs of treatment and in discouraging the cancer from coming back. In Denmark, exercise is part of treatment, in the sense that the cancer hospitals offer exercise programs for patients and pretty much require it for certain patients.

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  • wallycat
    wallycat Member Posts: 3,227
    edited December 2014

    Cancer really changes people but over all, I am doing well. Healthy fear is good, and I try to keep it to that level 90% of the time these days. I too came here right after dx and read all the happy threads.

    I'm 7-1/2 years out....8 years starting in April. I don't call myself a survivor until I die of something else

    When I get scared, I think about people like Julia Child, who died at 92-1/2 from a bacterial infection, not breast cancer she was dx with at 52 (I think). That's a survivor !!

    Remember new treatments are coming down the pipeline every year. Immunotherapy is such a hope I cling to should the beast ever rear its ugly head.


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  • candi07
    candi07 Member Posts: 188
    edited December 2014

    I am a survivor of 1 1/2 years. I'm feeling great with the exception of a few minor aches. I work out at least 3 times a week and work full time.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2014

    yep we have declared my 99 year old aunt a survivor.

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