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Topic: Just diagnosed yesterday

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

Posted on: Feb 8, 2008 10:33PM

califsun wrote:

I was just diagnoced with invasive carcinoma favoring infiltrating lobular carcinoma. I can't get in to see the surgeon until the 26th so I have no idea how bad it is and it's freaking me out. It doesn't help that I lost my Mom to b/c. I don't know what to expect and I have so many emotions that I'm trying to sort out. Everyone on this site seems so nice, I'd really like to find some support here. Thanks, Carol

Dx 1/1/2008, ILC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Feb 8, 2008 11:29PM joys_pink_ribbons wrote:

Please keep positive as much as you can and I will keep you in my prayers.....as tough as it is try to stay positive...

JOY

JOY2k5
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Feb 9, 2008 01:01AM - edited Feb 9, 2008 01:01AM by SLH

Hi Carol,

I'm sorry that you have to go through this.  It's probably what you most feared, because of your mom's death.  But cancer treatment has improved so much now.  When my dad had thyroid cancer 25 yrs ago, the chemo made him violently ill.  But my mom has been taking chemo off-and-on for 6 yrs for ovarian cancer and she's doing really well.

I was diagnosed with ILC 3 yrs ago.  I had a bilateral, by choice, and didn't have to do radiation or chemo.  Every cancer has it's own traits, but usually ILC is harder to detect, but slower growing.

The women on this site know so much and can help you.  There is also a book that I read called "Dr. Susan Love's Breast Book".

Take care,

sally 

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Feb 9, 2008 01:28PM nash wrote:

Welcome, Carol. You will find tons of support and information here. I'm glad you found us.

I'm sorry you have to wait so long to get in with the surgeon. Do you have an oncologist appointment yet? Maybe you can get in with an onc before the surgeon and have the onc order a breast MRI for you (which the surgeon will need anyhow) and you can start to get a handle on tumor size and if anything is going on in the other breast.

When you get your surgical pathology report, we can help you go through it and we're here for you to bounce treatment options off of.

You're in the hardest part right now, where you don't have enough info to have a game plan. Once you have a treatment plan in place, you will feel more in control.

My mom is Stage IV bc, and is currently doing poorly. I'm sorry abour your mom. The whole thing just kind of sucks.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel 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) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Feb 9, 2008 03:13PM califsun wrote:

Thank you so much for all your input. Your right the hardest part is not knowing what I'm in for. It's easier to deal with something when you know what your dealing with. I really like this site, it's really made me feel better to read all of the survivor stories that I've read.

Thanks, Carol

Dx 1/1/2008, ILC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Feb 9, 2008 04:44PM NancyLa wrote:

Hi Carol,

I am sorry you have to go through this, but you have found a good place of support.  I was diagnosed with ILC January 2008.  When I first found out I was in an absolute panic.  I did a lot of research and me and my doctors agreed on a lumpectomy with sentinel node biopsy with radiation and maybe chemo.  I will find out in the next week if I am also going the chemo route.  If there is a 1% chance chemo will increase my chances of cure I will do it. 

 I am not sure where you are spiritually but I can tell you that the one thing that really helped calm me down and give me a sense of peace and strength was praying. 

I also must tell you if you do get Dr. Susan Loves Breast Book, use it ONLY as a reference manual. Someone too recommended it to me and did not tell me this, so I read it like a novel.....TOO MUCH INFORMATION TOO SOON.  I was then told it is a great book for reference only. 

"If God brings you to it, He will bring you through it"
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Feb 9, 2008 07:39PM LauraGTO wrote:

Carol...The 3 W's are the worst! Wait, worry, wonder! Is there any way you can call and try to get in earlier? In the meantime, though...compile your list of questions and prepare for the appointment. I'm sorry you have rcvd this diagnosis. You will feel better once you have a treatment plan. Hang in there...best wishes to you and keep us posted!

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Feb 18, 2008 06:02PM Gitane wrote:

Hi,

I just read that you were diagnosed and wanted to let you know that you have come to a good place for support. The people here are the best. It's a crime to make someone wait so long to get the information they need to begin dealing with this. I remember how difficult the not knowing was for me. I agree that getting an MRI while you wait to see the surgeon would help the process along. Your oncologist or the surgeon could help you set this up. It might be worth trying to get the surgeon to move up your appointment, too. I know they don't want to give you a copy of the core pathology report before you see a doctor, so maybe you could get in earlier to see an onc. and have him/her at least go over that report with you. We will be waiting to hear from you and keeping you in our thoughts.

Gitane

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Feb 18, 2008 11:03PM figsgirls wrote:

Hi Carol. I just read your post. I'm sorry you have to come here, but you will find it to be a welcoming place with a lot of help and support. The waiting and worrying is definitely the hardest part. You'll read it over and over on the boards that once you  have a plan, you'll feel better, and it's really true. Hang in there.

When you do see the surgeon, it's helpful to have someone with you to take notes. You probably won't remember everything the doctor says, so the notes are really helpful later.

I'll be praying for you and sending positive thoughts.

Donna

Diag. 4/11/07 ILC 4.3cm 1/14 nodes ER+/PR+ Her2-. Lump., bilat.mast. 4AC 12 Taxol, Tamox. Implant recon.
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Feb 24, 2008 11:08PM califsun wrote:

I want to thank everyone for your input. My doctor appt. is the day after tomorrow, I'm glad it's finally here, the waiting has been hard but this site has been very helpful. I'll post after my appt., I'm sure I'll need more input.

Thanks, Carol

Dx 1/1/2008, ILC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Feb 29, 2008 05:29PM Sharonrm1 wrote:

Hi,

Carol, I too was diagnosed on 2/8/08 with ILC.  After mammograms and ultrasound,I have had 2 biopsies and an MRI and so far know only that I am er/pr+.  I have been to see a surgeon, an oncologist and a radiation oncologist plus have done a ton and a half of research and right now I am sitting in overwhelm which I am sure all of you others can relate to.  There is now a conflict in treatment plans.  Some say do surgery right away - lumpectomy or partial mastectomy, followed by radiation and then tamoxifan.  Others say, before surgery, take FEMARA to shrink the tumor and then do surgery.  I will be so curious to hear what you are told.

One other point, I have been hovering around this website for a few days, reading different postings.  Oh my gosh, I have learned so much more from the women who are going thru the disease than I have by the physicians who treat it.  That is why I finally decided to add my voice.

I will be thinking about you and now hope you can feel that you have someone else who is right where you are at this moment.

Sharon

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Feb 29, 2008 08:12PM nash wrote:

Welcome, Sharon. I, too, have learned more from other women than from the docs.

The neoadjuvant vs. adjuvant chemo decision is a big one, and it's hard when the docs don't agree. Ultimately you may have to go with your gut on the decision. 

Glad you decided to post, and please keep us updated on how you are doing.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel 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) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Feb 29, 2008 11:33PM califsun wrote:

Hi Sharon,

Your getting things done a little faster than me, it took 3 weeks to get in to see the surgeon she was highly recommended and she was booked up. She scheduled me for an MRI next Friday. She recommended a lumpectomy and radiation as long as the MRI comes out ok and I don't have anything in the lymph nodes. She said it was caught very early, it's less than a centimeter which is very rare for ILC. I feel some relief that it's so small but I'm still worried about the MRI and what it might show. Before I was told the size I had it in my mind that I would just have both of them removed so I wouldn't spend the rest of my life worrying about it but it looks like that's not going to happen...I hate the thought of thinking about it all the time and wondering if it's going to come back. I don't know if I helped you with your deceison, I was never told about the FEMARA but I'm guessing that's because it's already on the small size. I hope everythings goes good with you. I'd like to know what you decide and how it goes. Keep in touch.

Carol

Dx 1/1/2008, ILC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Feb 29, 2008 11:40PM - edited Feb 29, 2008 11:45PM by Gitane

Carol, Hope all went well for you. I think a lot about you, your mom, Nash, her mom.... You both have been through so much. You are in my thoughts. Please let us know how you are and if we can help.
Oops! Guess we were both writing at the same time, I just saw your post. What good news for you that it is so small. How rare is that in ILC? Very! Yea!


Sharon, It's hard to know what's best when the experts don't agree. Sometimes they don't agree because there isn't just one right way. I wanted treatment first to see what it did before surgery; that was right for me. Others want surgery first; that's right for them. I didn't have radiation, so I don't really know how it fits into the picture, but you will hopefully understand it all before having to make your choices. Ask lots of questions.

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Mar 1, 2008 09:50AM - edited Mar 1, 2008 09:52AM by paige-allyson

Carol- This just being diagnosed part is definitely the worst. Sorry that the process has been slow for you because of appt. scheduling. Wishing you the best with your MRI. Allyson

Dx 5/18/2007, ILC, 3cm, Stage IIIA, Grade 2, 6/17 nodes, ER+/PR+, HER2-
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Mar 2, 2008 10:08PM Sheri14 wrote:

Hello, my name is Lisa and I have a little different situation because I am here for my friend Sheri. Sheri is a bit nervous to jump into this support group. Sheri was diagnosed one week ago with ILC. She is still very shocked and scared. She asked me to facilitate this message board for her as she is afraid she would not know how to do it. ( I am also wondering if she wants me to be a filter for anything she is not ready to hear.) I hope this will be ok for everyone.

I have a copy of her pathology report and from doing as much research as I have done to this point, I will list out what we know. I apologize in advance if I do not understand some things properly yet.

HER2 Gene amplified (4.3)

The HER2/CEP17 ratio is 2.9 (not sure what this is at all)

She is a nuclear grade 3 (is this the same as Stage 3?)

The tumor is 5+cm

Estrogen Receptor: Negative

Progesterone Receptor: Negative

(From what she understands this rules out tomoxafin as a treatment)

They have tested one lymph and it was negative but it is not the one they want to test, they can not get to the one they want to see without surgery.

She is scheduled for a mastectomy and reconstruction April 2, chemo and radiation are in the plans. Chemo may start before surgery.

I apologize if I mispelled anything, this is all new to me. Sheri has been to the doctors by herself (divorced) and I am hoping she is understanding everything, but I will be going with her now to at least give her another set of ears. Can anyone decifer any of her findings for me? I know once Sheri sits with me and sees how easy this board is, she will take over for me here, but in the mean time I will print out every response for her and give it to her.

Thank you very much in advance for all of your advise

Lisa & Sheri

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Mar 2, 2008 10:50PM califsun wrote:

Hi Lisa and Sheri,

You should copy your letter and go out of this conversation and go to "start a new conversation" and paste it. You have some very good questions and if you start a new conversation under the ILC thread you'll get some very good answers because more people will see it. Sheri, I'm sorry you have to go through this along with this rest of us but this site is very helpful and supportive please don't be afraid to use it everyone here is very kind and they've all been or are in your shoes. None of us are alone...we have each other and in times like these we all need to take advantage of that. I'll be looking for your new conversation and I'll be looking at the answers you get because I have some of  the same questions. Good luck and I hope we can keep in touch.

Carol

Dx 1/1/2008, ILC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Mar 3, 2008 07:58AM Sheri14 wrote:

Thanks Carol, I will do that.

Lisa

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Mar 4, 2008 10:21AM Sharonrm1 wrote:

Hi Carol and all of you who kindly responded to my inclusion in this conversation.  After a lot of driving myself and doctors crazy, I will start with the Femara tonight and will be monitored monthly until the surgeon determines if a lumpectomy will be enough (3 to 6 months).  In the meantime, I think mine too was caught fairly early so I am going to start regaining my positivity and try to stop fretting too much.

Carol, I have been lucky in getting into physicians but that didn't speed up the process because of some of the discordance in the information.

To all of you other wonderful ladies who have been dealing with this longer, thanks from the bottom of my heart for sharing because it helps me to know what questions I need to ask.

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