Topic: What's your ILC story?

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

Posted on: Jul 6, 2007 07:49AM - edited Dec 7, 2008 09:49AM by Lynn12

Posted on: Jul 6, 2007 07:49AM - edited Dec 7, 2008 09:49AM by Lynn12

Lynn12 wrote:

When I was diagnosed, I came to this board and read the 15 pages of messages from other women with ILC. It was such a huge help for me. That thread is gone so I'm starting this thread so we can all post our stories.

I went to the OB/GYN in Aug. 06 and told him my right breast appeared to have gotten smaller in the past year. He checked for lumps but didn't find anything. Got my mammo in Oct. 06. They called me back for a 2nd because they noticed the right breast was smaller when comparing to my previous mammo in 2003. They still saw nothing but did an ultrasound where they did find enhancements. They did the core biopsy right then and 4 days later on 11/7/06, I was diagnosed with ILC. Surgeon sent me for a MRI which showed a small enhancement area in upper outer quadrant of right breast. Dr. wanted to do lumpectomy, I insisted on mastectomy.

Right breast mastectomy on 12/4/06. Diagnosed with stage IIB. 7.5cm multi-focal, ER+/PR+ her2-. the cancer was found in all four quandrants of my breast. They say it's rare for breast cancer to cause your breast to shrink. There was never a lump, but felt more like a thickening.

6 rounds of TC (taxotere,cytoxan) from Jan - May 07.
30 rads from Jun - Jul 07.
Started tamoxifen May 07
Prophylatic lb mastectomy with bilateral DIEP - Dec. 10, 2007

Switched to Arimidex - Sept. 08

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jul 10, 2007 01:26PM nash wrote:

I've read in many sources that with any mastectomy there is something like a 5% chance that the cancer can come back either in the chest wall or any stray breast tissue that was left. Here's a link to a great website about cancer risk management that discusses the issue:
Stage IV Pleomorphic ILC, initially diagnosed at age 38. Mets to brain, cranial nerves, bone and breast Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 7/19/2007 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (Left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Hormonal Therapy 7/1/2018 Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy 7/3/2018 External Local Metastases 7/3/2018 Brain Radiation Therapy 7/27/2020 External Local Metastases 7/27/2020 Brain Radiation Therapy 2/23/2021 External Local Metastases 2/23/2021 Brain Chemotherapy 3/1/2022 Other Dx ILC, Other, Stage IV Radiation Therapy Other part
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Jul 10, 2007 01:36PM marshakb wrote:

Connie, this shows 20-29% chance of mirroring. I have read the 30% many places also. 30% is alot!! Marsha
I'm not dead yet! Dx ILC, Stage IV, 1/13 nodes, ER+/PR+, HER2-
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Jul 10, 2007 01:55PM awb wrote:

If bc has invaded the lymph nodes, it has the potential for distant metastases; usually to 4 areas--bone, lung, liver and brain; it doesn't usually "spread" to the other breast. But lobular bc is often found to be bilateral, I've also read about 30%, so many women choose bilat. mast. to decrease their risk of having it happen in the other breast.

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Jul 10, 2007 04:53PM sandyb1938 wrote:

I was recently diagnosed with a 3rd Breast Cancer. The first one in 1995 was treated with Lumpectomy, radiation and Tamoxifen (Left Breast). Second diagnosis (Right breast) was Lobular cancer in 2001 - Lumpectomy & radiation and Arimidex. Third is a recurrence of Lobular Cancer (right Breast). I can't be radiated again in any breast now. My surgeon didn't think it was cancer so he didn't take enough out during the lumpectomy 3 wks. ago. He ordered an MRI to see if he removed all of the cancer (which he didn't) and suggested Mastectomy as the standard procedure. But he said I am a candidate for another operation to remove more of the cancer (which was there after the MRI), Herceptin and Chemo, plus remove some or all of the lymph nodes. I am 68 yrs. of age andd I really need some advice from someone who has gone thru this. If I decide to have the mastecomy will I have to have chemo also and have some or all of my lymph nodes removed?

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Jul 10, 2007 06:46PM wallycat wrote:

Hi and welcome.
I'm curious if your first BC (left breast) was lobular as well.
Herceptin use implies that your tumor is Her2 positive and if you were on tamoxifen the first time out, it means you were ER + but you didn't mention any chemo so am assuming not HER2 + .
Chemo is based on many things---size of tumor, lymph involvement, age of patient (usually the younger the more apt to use chemo). Lobular tends to respond better to tamoxifen but you said you were on tamox and it still came back, so not sure if they would have you on hormone therapy.
There is a new test called the OncotypeDX which tests your tumor and its genetic markers to see how receptive your cancer would be to chemo--your oncologist can order this for you to help in your decision making (unless your tumor is so large and there is node involvement).
Best to you...
I am very sorry you had to deal with this 3 times.
Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jul 11, 2007 09:14AM sandyb1938 wrote:

Thanks so much for your reply. The first cancer (left breast) was not lobular - it was something with ductal in the name, sorry can't remember. I was on tamoxifen for 5 yrs. Then about 2 yrs later after stopping the tamoxifen, I was diagnosed with Lobular on the right breast which was next to the nipple. Now this one which is about 5 or 6 yrs. from 2nd surgery and being on Arimidex for 5 yrs. My surgeon told me to stop taking the Arimidex since this last diagnosis. I am scheduled for another lumpectomy on 7/25 since he didn't get all the cancer 3 wks. ago. I wish someone can advise me the best treatment. I really don't want them to take all my lymph nodes - he is planning to try for the centinel node and said if he can't find one, he will take them all. Any time I had my nodes taken, there were none positive. Being 68 yrs. old and not doing anything radical, what would my life expectancy be? I am not doing well with this.
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Jul 11, 2007 12:50PM wallycat wrote:

Ask your doctor to run for you (or you can sign in as a professional and do this yourself.) You plug in some of your statistics, though not all of them, and it will calculate for either recurrence or mortality (which ever you pick). There is a second database attached to it for the Genome portion which you can use if you get the OncotypeDX and have a score...plug in your score along with the stats and you should get more refined statistics.
Your doctor has access to all of this and can assist you.

I opted for bilateral mastectomy because I didn't want rads. My onco score was a 20. I would get 2% benefit from chemo. I am 50. I opted out of chemo and because of mastectomy, no rads.
I'm on my 3rd day of tamoxifen and no side effects yet...maybe I am the 1 in 8 who doesn't process it well. I was nervous to take the med so that was another reason I opted for the mastectomy--incase i chickened out of further treatments.
Do you have family or someone close you can lean on during this time. It is so stressful, I know. I was a basket-case when I first came on this BB and there were some wonderful "virtual hand-holders" that got me through the worst of it.
I still worry about recurrence, but I am able to sleep at night and my recovery from bilaterals is coming along well.

If you are not comfortable with your doctor and his recommendation, you know you are allowed to seek a second opinion; sometimes even a third. Finding doctors you can count on and trust is an important part of this journey as well.
Best to you! We are all here, sisters in the fold, ready to help if we can.
Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jul 11, 2007 04:00PM sandyb1938 wrote:

Thank you. Do you think I should consider bilateral mastectomy? I really do not want chemo or herceptin. Also, if I decide on mastectomy, how long is the healing process. I am scheduled to go on a cruise to Alaska on 9/8/07. I don't want to reschedule the cruise.

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Jul 11, 2007 05:59PM conniehar wrote:

You will be fine by September. I had a left breast mastectomy and took 3 weeks off of work. I was ready to go back in two weeks. I was surprised how quickly I felt better. The worst part is the drains - once those were out I felt a lot less pain.

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Jul 11, 2007 07:55PM wallycat wrote:

Herceptin is used if you are HER2 Positive. The reading I have done here seems to imply that HER2 positive is a more aggressive cancer. If you are not ER+ then running the adjuvantonline won't help because it is geared towards ER+ tumors. I would discuss strongly with your oncologist. Did you have positive nodes?

I had my bilaterals and am about 3-1/2 weeks out. I went to work 2 weeks afterward. I think at 4 weeks, you will hardly remember what it is like to have had boobs .
My doc was a bit confused and upset that I did not need or want pain meds after surgery. I only had a few days into week 2 that things started to feel tight and raw and noticeable, but not excruciating by any means. I could have taken a pain pill then if I had thought of it, but the pain didn't last long...came in waves sort of and I thought the pain meds the Rx me were overkill. Finally decided to take one ibuprofin to take the edge off and that was fine.

The hardest thing for me is these cords/string-like things that developed, especially on the side that had the initial lumpectomy/SNB. My surgeon said this is common and usually from disturbing the lymph nodes. My left arm doesn't have much of anything to complain about.
If you schedule in July, by september, you will be at 95-100% your old self.
I personally--and we are all different---would discuss the herceptin issue with your onco.
Find out the full pathology and report back

If you are nervous about surgery, you can talk to your surgeon if timing after your cruise would be better...i hate summer so I wanted mine done when I didn't care if I ended up sitting inside at home for a few days (or even weeks!).

Best to you!!
Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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