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Topic: New Here: ?s to ask surgeon at 1st appointment

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

Posted on: Dec 5, 2018 07:03AM - edited Dec 5, 2018 01:51PM by betterdazeahead

betterdazeahead wrote:

Hi All!

I was diagnosed with ILC 2 days ago, at 41 years old.

I was hoping to see a surgeon today (it was scheduled) however it was with a different doctor then who had been suggest by my nurse navigator and a friend of mine who is an oncologist (who also happens to be at the same cancer center I will be at and is colleagues with these surgeons) so I canceled and unfortunately the doctor I want to see was booked today (I will call to see if she has any cancellations) and TH/F she is in surgery all day. So, I have until Monday to wait....which may be a good thing in disguise as I can be more prepared and hopefully a little less emotional as everything has a little more time to soak in (I am sure this will be a roller coaster though).

I don't know much besides this was caught via 6mt MRI, 3 of the 4 masses were + and that it is ILC. I have a family history but none of us have any gene mutations (paternal grandmother, paternal aunt, my Mom had ovarian cancer)

I guess why I am posting is A. to introduce myself and meet you all and B. since I have a ton of time on my hands I want to make a very clear list of questions for my new doctor at this 1st appointment......was hoping you all could help me make my list as complete as possible. C. Any advise and tips you can give a newbie too are very welcomed.

I am no stranger to fighting to keep a loved one alive, we are no strangers to the medical world. I have a now happy 12 year old whom has been sick his entire life and had a bone marrow transplant when he was 5. We have spent 12 years living in and out of hospitals. I know I am a good caregiver, advocate ect BUT I have zero clue on being the patient and needing to take care of myself and let some control (like household stuff and kid stuff) go.

I know all our journeys may be different, yet similar and am hoping to learn a lot from anyone who is going through or been down this bumpy path of life. I also hope I can be a source of helping others as time goes on.

XOXO


Diagnosed at 41 with multicentric ILC 4 tumors and LCIS throughout entire breast Dx 12/3/2018, LCIS/ILC, Left, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 12/9/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/30/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 3/13/2019 AC + T (Taxol)
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Dec 5, 2018 10:15AM - edited Dec 5, 2018 10:17AM by claireinaz

Hi there, better,

So sorry you have to join us and our club no one wants to be a member of...but you will find so much information and guidance here and (at least for me) it made my journey much less frightening than it might have been without this website and discussion forum.

One thing I'd ask your surgeon is if you have been dx with dense breasts which can hide masses. ILC hides from regular scans like mammograms, and also has a tendency to be multi-focal (found or develops in both breasts over time). I had dense breasts, but had 5 clear mammos that didn't report the problem because the problem hid in my dense tissue and from scans because it was ILC and often doesn't grow in a mass that is easily detectable.

I made the decision to get a BMX because I didn't trust any scan after the false negatives, and because of my dense breast tissue and that it was ILC. After the surgery the "good" breast showed ILC hyperplasia, meaning it could have turned dangerous later. So I was glad I had the BMX in addition to lumpectomy, chemo and radiation.

Surgery means you have to give to get potential protection. You do lose sensation in your breasts, and I sometimes feel sad about that. But for me a bit of sadness was better than constant worry about what might get missed again in the future. I had reconstruction, and am pretty happy with the cosmetic results.

Others I know will weigh in with more advice. Once you get your entire status (lymph node status, grade, stage, size, hormone receptor status etc.) add it to your signature line so we can tailor our help to your situation. It helps us help you.

Meanwhile, believe that you will get fierce, kick cancer in its *ass, and get on with your long life because you will. (PS I deleted the following post because for some reason it double-posted my response).

Hugs,

Claire in AZ

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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Dec 5, 2018 10:16AM - edited Dec 5, 2018 10:16AM by claireinaz

This Post was deleted by claireinaz.
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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Dec 5, 2018 12:59PM betterdazeahead wrote:

Hi Claire!

Thank you very much for your response. I hae extremely dense breasts which was why my doc ran an MRI. So far it is only in my left breast.

Forgive me for asking but I am new and don't know all the terms yet....what does BMX mean?


Diagnosed at 41 with multicentric ILC 4 tumors and LCIS throughout entire breast Dx 12/3/2018, LCIS/ILC, Left, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 12/9/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/30/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 3/13/2019 AC + T (Taxol)
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Dec 5, 2018 05:48PM Castigame wrote:

bilateral mastectomies

Mimi Dx 1/11/2017, IDC: Papillary/IDC: Cribriform, Right, 3cm, Stage IIIA, Grade 2, 4/17 nodes, ER+/PR+, HER2- (IHC) Dx 1/11/2017, IDC, Left, <1cm, Stage IA, 0/2 nodes Surgery 2/15/2017 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal Chemotherapy 3/21/2017 Radiation Therapy 7/31/2017 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 10/30/2017
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Dec 5, 2018 08:16PM Dani444 wrote:

Link to questions

https://www.mybreastcancercoach.org/en-US/

Those are hopefully:) links to some information that helped me with what I should ask at that first appointment. You will get so much information in that first meeting. I got a full picture of my pathology from my biopsy at this appointment including hormone receptor status and HER2 status. But due to the nature of ILC it took us a while to decide on surgery choice, as they were having a hard time determining the exact size. It really does start to get easier after you start getting more information from all of your team and forming a plan.

This forum has been a lifeline for me at times. The support and advice I have gotten on here has been tremendous. Glad to see that you have a nurse navigator, I swear mine was an angel from heaven. Ask as many questions here that you need to or just pop in to vent if needed. Take care



DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 8, 2018 07:30AM betterdazeahead wrote:

Hi Dani444

Thank you for your response I greatly appreciate it! My Mom just got to town so I have been keeping busy waiting for Monday to arrive by keeping her and her boyfriend entertained and off of my computer :)

Hope you had a good week and an awesome weekend ahead!

Sophie

Diagnosed at 41 with multicentric ILC 4 tumors and LCIS throughout entire breast Dx 12/3/2018, LCIS/ILC, Left, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 12/9/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/30/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 3/13/2019 AC + T (Taxol)
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Dec 8, 2018 08:11AM beach2beach wrote:

So sorry you had to join us but welcome. Glad you are keeping busy,,sometimes spending too much time on the computer with Dr.Google is not such a good idea lol.

It's true once you get all the information, hormonal factors, size, etc, you can set a plan in place and feel at least you are back in the drivers seat. It's not easy but you will do it. So glad your son is well now!! Now the caregiving you have to do is for yourself.

So you would want to know the size of the area/tumor. The grade and hormonal factors ie; ER+ or - , PR + or - and HER2 + or neg-. These may not be available at the time you go to your appt. Every place is different. What he/she thinks you can do lumpectomy/mastectomy, lumpectomy comes with radiation, mastectomy whether you decide to do one or both, benefits vs risks. Will they do the Oncotype test after to determine if chemo is favored or not.

My surgeon left it in my hands if I wanted to do a lumpectomy or mastectomy. She never tried to sway me either way. Myolder sis had breast cancer 9 years prior to me so I pretty much had it in my mind that if it ever happened to me I would do a mastectomy. I had dense breasts and always had issues with benign things going on. I opted for a double, and went direct to implants. At the time of diagnosis, all I could think of was that I wanted it out of me and wanted to be around to see my kids graduate, have families of their own etc. So I felt my choice worked best for me. I eliminated some anxiety for myself by doing both. I did not want to be going every 6mths (which is what my surgeon said I would have to do) for increased surveillance if I did a lumpectomy.

I'm sure others will chime in on what else to ask.

It's very overwhelming as you well know from having to go through similar circumstances with your child. That shows how strong you are, and you will be that way for yourself too.

Keep busy this weekend and no Dr. google...!

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 8, 2018 05:16PM betterdazeahead wrote:

Hi beach2beach thank you so very much for reaching out to me!

I just got a notification that my ultrasound was updated with some of the biopsy information. It says that the masses are all grade 2 and that there is perineural invasion on 2 of the 3 the other one had both perineural invasion along with vascular and lymphatic invasion......Of course I have no clue what this means but it is more information then I had before. Do any of you know what this relates to or questions I need to ask besides more details on it?

Diagnosed at 41 with multicentric ILC 4 tumors and LCIS throughout entire breast Dx 12/3/2018, LCIS/ILC, Left, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 12/9/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/30/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 3/13/2019 AC + T (Taxol)
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Dec 8, 2018 09:10PM jessie123 wrote:

I'm exactly where you are --- had biopsy - diagnosed lobular - but no other information available. Went to a different facility to see a surgeon. I know people say not to read google, but I did constantly . I had to understand my cancer because I knew once things got started I would have to make many decisions. So I would advise you to google and keep a notebook near to write questions. I also read this board constantly and asked questions. If I hadn't studied so much I wouldn't have understood a thing the surgeon said at the end of our meeting. I also typed up everything -- such as why I was there, my symptoms and my questions. When I try to talk to a doctor I always feel rushed and don't want to ramble on --- then I forget to tell her/him things or forget some of my questions. Putting it into writing for her to read before she sees you is so much easier --- my surgeon even said it was easier. The tests she has scheduled for me before I see her again to discuss treatment is 1. blood work 2. Breast MRI 3. second core needle biopsy 4. bone scan. I wondered about the bone scan, but now understand that she is verifying no metastasis before she decides on treatment --- my lump is small 1.3 cm. That's all I know for now. Good luck -- looks like we'll be going through this at the same time.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Dec 8, 2018 09:20PM Spookiesmom wrote:

You will be getting lots of information from your doc. S/he will answer most of your ? before you can ask.

So I suggest you take another set of ears. DH, mom, friend. And ask if you can record the visit on your phone

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Dec 9, 2018 09:05AM betterdazeahead wrote:

jessie123 - we will have to keep each other posted on everything. I have 3 masses all are small but on the report says 7.7cm of diseased area. I am worried about if it has spread since reading about the areas that invasion was present. Tomorrow 8am is my appointment.....I think I have most everything in order.

spookiesmom - my DH is coming along. I like the idea of asking to record the visit so we have it to listen back to, thanks for the tip!

Diagnosed at 41 with multicentric ILC 4 tumors and LCIS throughout entire breast Dx 12/3/2018, LCIS/ILC, Left, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 12/9/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/30/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 3/13/2019 AC + T (Taxol)
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Dec 9, 2018 12:03PM MoonGirlJess wrote:

Sorry for your diagnosis. I was diagnosed at 41 (in June) with ILC and I have a 12 year old also (a girl). My tumors were in my left and I had a mastectomy straight away (I also had tumor in my nodes and an axillary node dissection). My surgeon said he got it all out. I opted for no recon and will get my right mastectomy after rads are done. I had my implants when this all started and I will never ever have another mammogram so I think my time with boobs has passed.

Now I’m dragging my ass through never ending chemo.

You will slay this. It’s an awful diagnosis. But you will get through this.

Pleomorphic Dx 6/6/2018, ILC, Left, Stage IIB, Grade 2, 3/9 nodes, ER+/PR+, HER2- Surgery 6/21/2018 Chemotherapy 7/29/2018 AC + T (Taxol) Radiation Therapy 1/21/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/29/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/19/2020 Prophylactic ovary removal
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Dec 9, 2018 12:14PM betterdazeahead wrote:

hi MoonGirlJess!

Thank you for replying!! How is your daughter handling all of what is happening with you?

We are a pretty open family when it comes to health issues. My 15 almost 16 YO is alright but can tell she is more worried then my 12 YO son. He has spent his entire life with his own health issues so nothing seems to phase him....he is a lover and super helpful to me.

I hate that we are both here but find it helpful we are the same age going through this given what I keep reading is we are young for this diagnosis. May I ask how you decided to wait on the mastectomy for your other breast? Also did they know you had tumors in your nodes before they went in or did they find them then?


Diagnosed at 41 with multicentric ILC 4 tumors and LCIS throughout entire breast Dx 12/3/2018, LCIS/ILC, Left, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 12/9/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/30/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 3/13/2019 AC + T (Taxol)
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Dec 13, 2018 03:11PM - edited Dec 13, 2018 03:11PM by MoonGirlJess

Betterdaze—Shoot! Sorry for the late reply! My daughter is a rockstar. She has handled my diagnosis better than anyone. I didn't tell her until about a week after I knew as I was so emotional and constantly crying. After told her I had BC and she says 'Yes, Mom. I know I live here.' She doesn't miss a beat. Your son and daughter sound amazing. With time this get easier for everyone. The treatments start and we get to business.

I'm a total open book. Fire away with questions. My breast surgeon wouldn't do a BMX as there was no CA found in my right breast. He told me that if he took both off and there always seemed to be a problem with the breast that didn't need to be removed at that time and that complications from surgery can delay chemo which isn't what we want. I understood it as a RN but I just wanted them both off. My plastic surgeon (who discovered my masses) dug in my armpit and felt enlarged nodes while I was under and told me about it when I was in the recovery room. So I knew I was screwed big time. A few days later when I met with my breast surgeon and he did ultrasound me and did see my enlarged nodes also. So, yes, I knew prior to surgery that it was in my nodes.

Please keep me posted!

Jess

Pleomorphic Dx 6/6/2018, ILC, Left, Stage IIB, Grade 2, 3/9 nodes, ER+/PR+, HER2- Surgery 6/21/2018 Chemotherapy 7/29/2018 AC + T (Taxol) Radiation Therapy 1/21/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/29/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/19/2020 Prophylactic ovary removal
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Dec 17, 2018 07:52AM claireinaz wrote:

I found it helpful to reassure my adult daughter that I was going to be okay, that I had a skilled MO and surgeon, and that I was going to do all the treatment necessary to kick cancer's *ss, so to speak. I found encouraging and credible stats and shared them with her since when most hear the word "cancer" for the first time they immediately think death sentence, which was far from the truth. It helped her a lot.

Claire in AZ

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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Dec 17, 2018 08:00AM betterdazeahead wrote:

MoonGirlJess I absolutely love the resilience of kids......I want to take it and bottle it to use for myself :)

Thanks Claire I have been doing the same thing for my kiddos. They tend to understand a lot due to my son and all of his issues we fought to help him surrivie. Defintly letting them know I have the best doctors I can in this area and letting them know I am utilizing all I can to fight this beast I am sure has been helpful to them.

Diagnosed at 41 with multicentric ILC 4 tumors and LCIS throughout entire breast Dx 12/3/2018, LCIS/ILC, Left, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 12/9/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/30/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 3/13/2019 AC + T (Taxol)

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