Topic: ILC stage 3 and 10 year survival

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

Posted on: Apr 12, 2016 10:59PM

Posted on: Apr 12, 2016 10:59PM

gracejoy wrote:

I am wondering anyone with ILC stage 3 diagnosis and made it to 10 year without any recurrence.

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy; Mastectomy (Right) Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/25/2014 Whole breast: Breast, Lymph nodes, Chest wall
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Apr 19, 2016 03:12PM MFalabella wrote:

Congrats, I havent started treatment yet, and hope to be there with you someday

45yo, mom to 4 boys, wife to 1 awesome husband Dx 4/3/2016, ILC, Right, 5cm, Stage IIB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/13/2016 Lumpectomy: Right; Reconstruction (left) Radiation Therapy Whole breast: Breast, Lymph nodes Chemotherapy AC + T (Taxol) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 19, 2016 06:27PM taag4 wrote:

Hang in there MFalabella, treatment isn't easy but its very doable. I think its the not knowing what to expect thats the worst. Even though the Dr's are so good at explaining everything its just really hard to imagine how you are going to feel. It was a long year of treatment but it went by fast, and everyday got a little easier.

Dx 2/18/2014, ILC, Right, 6cm+, Stage IIIC, Grade 2, 1/15 nodes, ER+/PR-, HER2-, Surgery 3/22/2014 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Chemotherapy 5/15/2014 AC + T (Taxol) Radiation Therapy 9/8/2014 Whole breast: Breast, Lymph nodes, Chest wall Surgery 6/6/2016 Reconstruction (right): Free TRAM flap Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole)
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Apr 21, 2016 10:37AM Momine wrote:

taag4, I insisted on bilateral mastectomy. ILC is sneaky and can evade detection, even with vigilant surveillance. Also, I have major needle and mammo phobia. When they told me I would have imaging on the "good" breast every 3 months, and "if we see something, we can just biopsy," I knew this would seriously mess with my QOL. Further, I was very dubious about reconstruction (I have not, so far, had any) and figured that managing the whole thing would, for me anyway, be easier if I just didn't have boobs at all. Lastly, I had a gut feeling that lefty was also bad news, even though nothing showed on any of the extensive imaging (U/S, mammo, CT and MRI).

For me, it worked out. The path showed that lefty was, indeed, bad news and already had LCIS and a bunch of precancerous crap. So, good riddance, as far as I am concerned. Being boobless is obviously weird, but I like being able to wear small foobs, big foobs or no foobs at all as the mood strikes me. Finally, it is much easier to check the chest wall with no reconstruction in the way.

However, I realize that I may be a bit of a weirdo and that this choice would not work for everyone.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Apr 22, 2016 02:23PM taag4 wrote:

Momine thanks for the reply. I just went to see my oncologist and surgeon the following day. I asked about an area I'm not sure about (feels a little different) I had a memo in Feb and it was fine, but it was also fine when I had ILC so I really didn't put any weight in that. So they are going to do a MRI to get a better look. Im on the waiting list for deip flap reconstruction maybe may or june, so I need these results asap. As you said ILC can and does evade detection as in my case, so still have the feeling like I should just do away with my other breast, even though the plastic surgeon, surgeon, oncologist and radiologist all are telling me there is no need. So many decisions I also sometimes think it might be better to be boobless. Funny you brought up the point about small, big or no boob. I was just going over that in my head as Im thinking of pro's and con's. Wishing you good health.

Dx 2/18/2014, ILC, Right, 6cm+, Stage IIIC, Grade 2, 1/15 nodes, ER+/PR-, HER2-, Surgery 3/22/2014 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Chemotherapy 5/15/2014 AC + T (Taxol) Radiation Therapy 9/8/2014 Whole breast: Breast, Lymph nodes, Chest wall Surgery 6/6/2016 Reconstruction (right): Free TRAM flap Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole)
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Jun 4, 2016 09:41PM jpsgirl96 wrote:

10 years out from bilateral bc - DCIS with micro-invasion on the left, ILC with 6/16 nodes on the right. Lumpectomies, TACx6, 33 bilateral radiation, 6 months on Tamoxifen, 9 years Femara. Annual well baby check w my beloved oncologist on Thursday - last of the Femara this coming October. Doing well; turned 50 during radiation, will be 60 in August. Sending good thoughts - this is a great place for support and information and inspiration.

Dx 1/15/2006, ILC, Stage IIIA, 6/16 nodes, ER+/PR+, HER2- Surgery 3/1/2006 Lumpectomy: Left, Right; Lymph node removal: Left, Right, Sentinel, Underarm/Axillary Chemotherapy 3/23/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/1/2006 Breast
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Jun 4, 2016 10:54PM Smurfette26 wrote:

Glad you have done so well jpsgirl96. ThumbsUp

Dx 9/12/2015, ILC, Right, Grade 1, 1/4 nodes, ER+/PR+, HER2- Surgery 10/9/2015 Lymph node removal: Sentinel; Mastectomy: Right Chemotherapy 11/8/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/14/2016 Arimidex (anastrozole)
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Jul 14, 2016 04:31PM hmh23 wrote:

My name is Heather Hillier, 6+ year survivor and I am the Advocate Co-Chair for the 1st International ILC Symposium.

Like so many ILC survivors, my diagnosis came late and I was Stage 3A at diagnosis. I am so excited to be participating in the 1st International ILC Symposium as Patient Advocate Co-Chair. We have amazing researchers in Pittsburgh who are committed to answering your questions and concerns you have raised in this discussion board.

The goal of this gathering of 32 of the world's leading ILC researchers is to gain a better understanding and improving care for thousands of women with ILC is of high significance. We hope to gain a greater appreciation for the characteristics of patients, unique tumors, and treatment response for ILC and an expanded knowledge of options for patients with ILC, such as patient selection for neoadjuvant versus adjuvant, breast conserving surgery, etc.

This symposium will form the foundation for a vibrant, collaborative community of scientists that will lead research in ILC, ultimately resulting in improved outcomes for patients with this disease.

We are also focusing on ILC Advocates with a special breakout session for advocates only on Thursday afternoon to discuss many of the topics you have addressed here. We will also have an open Q&A that evening with Researchers, Clinicians and Advocates. On Friday morning we will present our findings from the Advocates to all attendees.

Additionally, I am compiling a booklet of ILC survivors and their respective stories to provide to each of the clinicians and researchers. So many of our stories are the same yet are experiences, side effects and treatments are different. We hope that this will help personalize this disease for those in attendance. Over the next few days, I will post a brief Q&A for anyone and everyone with ILC to complete. I am also hoping to secure a photo of each participant with their respective story.

Finally, we will be offering 6 - $500 scholarships to advocates who will be traveling to the symposium. Details to come. This is a 1st time opportunity to have our voices heard by the best ILC researchers in the world.

Below is the registration page for all interested.

https://ccehs.upmc.com/registrantCategories.jsf

Please don't hesitate to reach out to me with any and all questions. Thank you, in advance for your time and I hope to hear from you soon.

Sincerely, Heather Hillier

Realize the majority of your body is healthy! Dx 1/28/2010, ILC, 2cm, Stage IIIA, Grade 2, 5/9 nodes, ER+/PR+, HER2-
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Jun 25, 2017 11:20PM Carolehebert wrote:

You made me feel so good right now :))

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Jun 27, 2017 02:59AM Momine wrote:

taag, yes the docs will insist that BMX is overkill, and going strictly by statistics, they are right. Also, in many cases, it WILL be overkill and it is a fairly major step to take, so I am in no way saying it is the way to go. For me, it was the right choice, however.

As for MRIs and all the rest, I am not convinced of the efficacy when it comes to ILC. The breast we thought was being removed prophylactically, because the patient had decided to be hysterical about the whole thing ;), had been mammoed, MRIed and ultra-sounded (at least 3 times) prior to surgery. All they could see were 2-3 micro-calcifications that they all insisted were sure to be completely benign. Wrong! My surgeon said afterwards that had I not had it removed, I would have been back in treatment within a year.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jun 27, 2017 09:42AM - edited Jun 27, 2017 09:46AM by claireinaz

No one can tell you for sure what to do (BMX or not, UMX or not) but what pushed me over the edge was the knowledge that ILC can often be multi-focal, and I didn't trust the 5 years of "clear" (false negative) mammos that I had before my dx. I just didn't want to have to worry that something else wouldn't be caught. I also had 2 breast MRIs during the time between tx and surgery that didn't expose the dysplasia I had in the "good" breast (see my previous post).

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus

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