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Topic: ILC

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

Posted on: Oct 20, 2018 06:03AM - edited Oct 20, 2018 06:07AM by Suzyshacklechick

Suzyshacklechick wrote:

I was just diagnosed with ILC and go to Dr. the 30th. Very scared and wondering what usual treatment is. Thanks oh. Also, how soon til they do surgery

Dx 11/2/2018, ILC, Left, Grade 1, ER+, HER2-
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Oct 20, 2018 07:16AM MoonGirlJess wrote:

Sorry for your diagnosis. I had tumors in the left and had a mastectomy. Now I'm in chemo. Then I have rads. Lobular is a sneaky one. Easily missed. I was 41 at diagnosis.

Surgery (or chemo) usually happens fairly quickly. Depends on what treatment plan is decided. Between my diagnosis and mastectomy it was less than 3 weeks and it was only that long because I had to recover from having my implants out.

For your drs appt, write down questions and bring a friend who is great at taking notes with you. Things tend to happen real quick, it did for me. I had to give myself a very quick education on chemotherapeutic drugs, etc. because I was way out of my comfort zone (I'm a RN but no real knowledge of oncology). I now know that chemo nurses are angels on earth because they have let me cry and sob on their shoulders and pulled me through my dark days. And there will be the dark days, unfortunately.

This is a crappy deal, no doubt, but you will get through this.

Please feel free to share more about yourself!

Jess

Pleomorphic Dx 6/6/2018, ILC, Left, Stage IIB, Grade 2, 3/9 nodes, ER+/PR+, HER2- Surgery 6/21/2018 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy 7/29/2018 AC + T (Taxol)
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Oct 20, 2018 07:55AM Suzyshacklechick wrote:

Thank you Moongirl. I am so very nervous and am glad I found this site. I am just overwhelmed

Dx 11/2/2018, ILC, Left, Grade 1, ER+, HER2-
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Oct 21, 2018 03:08AM beach2beach wrote:

Sorry you are joining us but welcome. Depending on size and hormonal factors that will determine treatment. I was diagnosed in late July last year and had surgery a little under two weeks later. There is a good chance you may just need surgery and either tamox or an AI depending on your age. Thats the route I went. Had surgery, did Oncotype test, came back low risk. have been on tamoxifen for past year.

Absolutely have someone go with you if possible to take notes. You don't realize sometimes how even though you are now going through the everyday motions, you are in a daze.

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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Oct 21, 2018 06:23AM Suzyshacklechick wrote:

Thank you beach2beach. So no radiation or chemo? So many people are telling me to go diet natural route. Is that crazy talk? I am so confused

Dx 11/2/2018, ILC, Left, Grade 1, ER+, HER2-
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Oct 23, 2018 04:01AM claireinaz wrote:

Suzyshackle, ILC sucks! I'm sorry you find yourself here, but I found so much educational research support and moral support at this site I don't know how i could have gotten through all my treatment without it.

No one can advise you to "go natural" or not. You can go to the discussion board threads for alternative medicine etc. here, but in this early time I wouldn't make any commitment--keep an open mind, since you admitted you're confused. Do your research but keep an open mind and ask questions of your oncologist, etc.

I didn't feel comfortable just going "natural", but I do combine many suggestions about diet, exercise, supplements, meditation, etc. that seem to complement conventional treatment for ILC. So I guess I integrate both non-medical/alternative and medical treatment to help me try to keep any recurrences at bay. I did go through chemo, rads, BMX and recon, and am taking daily medication called an anti-hormonal. None of that was especially difficult, but it was tedious and I got through it--without even losing any work time.

Good luck, we are here for you.

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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Oct 23, 2018 08:29AM Suzyshacklechick wrote:

Thank you so much Claire. I know I will feel much better after I get to see the surgeon on the 30th and I have a plan. I am hoping I can wait until before Christmas as my husband has 3 weeks off and we can deal with this. This sounds like a sneaky cancer and I just want it gone. I am so glad I found this site. The shock is going away and I am ready to kick some you know what !!!!!

Dx 11/2/2018, ILC, Left, Grade 1, ER+, HER2-
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Oct 24, 2018 03:33AM claireinaz wrote:

Hi Suzy, again--

Try not to let others throw you off guard by sharing anecdotal stories with you right now. People try to be helpful because they don't know how to help us. But often they share misinformation, partial information, or downright wrong information.

I'll never forget my colleague who, early after I found out, told me his ex-wife had breast cancer...I asked him how she was doing hoping he'd tell me some good news and he said she died (!!!!) but then said she "went the all-natural route" for tx and did some treatment in Mexico. Turns out it was years ago she died, but I sure didn't need to hear that as I tried to talk myself off my own cliff, tell myself hopeful stories, and find current research that supported my treatment decisions.

One hopeful point for you is that ILC tends to be a bit less agressive than other sub-types and slower-growing. That knowledge really kept me going in the early days of this new normal.

Hugs,

Claire

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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Oct 24, 2018 03:54PM Suzyshacklechick wrote:

Thank you Claire. Everyone has so many opinions of what I should do. I’m sticking with this forum and people like us who are going thru it. Thanks for taking time to answer me

Dx 11/2/2018, ILC, Left, Grade 1, ER+, HER2-
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Oct 31, 2018 12:49PM momand2kids wrote:

Suzy

everyone does indeed have an opinion. I limited myself to this site and hospital websites. I also took a voice recorder to all my dr. appointments so I could listen later and remind myself of the good outcomes that the dr. forecasted at every visit. I had great friends and colleagues, but they were not in the dr. appointment with me and did not hear what was happening. We all have to become very well-versed in breast cancer very quickly-- and those around us cannot often keep up.... this site is great because everyone has been there-- our experiences are different, but we all know the fear and the uncertainty in the beginning---

Take care

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Oct 31, 2018 01:19PM - edited Oct 31, 2018 01:19PM by Suzyshacklechick

Thank you. Went to Dr yesterday and found out I am stage 1 and tumor is 5mm. Smaller than a pea. I go in for MRI next week and they said lumpectomy with radiation and a pill is her recommendation. Mastectomy not some she sees as nessicary in my case. Very relieved and trying to stay positive. Thank you all❤️

Dx 11/2/2018, ILC, Left, Grade 1, ER+, HER2-
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Nov 2, 2018 01:32AM beach2beach wrote:

great news suzy! Yes no chemo or rad because I decided to do a BMX. my tumor was 7mm. I could have done lumpectomy and rad but it was my choice to do BMX. So that was done and just take Tamoxifen as I;m still pre-menopausal at 52!

As devastating as the dx is, once you know the road your headed you feel you can make some decisions and start to look forward rather than being stuck in neutral

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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Nov 6, 2018 06:51AM beachw3 wrote:

Hi everyone, I was just diagnosed again and am having double mastectomy nov 14. I am scared also. It will be about 4 weeks from diagnosis to surgery.


Dx 1/2016, DCIS, Right, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+ Surgery 2/16/2016 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 3/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 3/28/2016 Whole-breast
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Nov 6, 2018 04:49PM Dreya711 wrote:

Hi @beachw3- I just had a double mastectomy on October 3rd. I was scared as well, and while it hasn't been easy, it also has not been horrible. My best advice is to get your support team ready. My mom came and stayed with us for 25 days, and I needed her every one of those days. Also, a friend of mine set up a website called MealTrain for us and posted it on my Facebook page. Several people brought over meals for our family or sent us gift cards, Uber Eats cards, etc. so we didn't have to worry about cooking/grocery shopping. Be ready to sleep in a recliner if you have one, if not I also bought a big wedge pillow which allows me to basically sit up and sleep in the bed. Get your clothes/pj's ready. They should be button up because the first few weeks it will be difficult to raise your arms. Let me know if you have any other questions, but I promise you will be fine. :)

Dx 9/2017, LCIS, Right, ER+ Surgery 10/6/2017 Lumpectomy Hormonal Therapy 10/31/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 9/2018, ILC, Right Surgery 10/3/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/3/2018 Mastectomy: Left, Right Hormonal Therapy Femara (letrozole)
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Nov 8, 2018 03:38AM claireinaz wrote:

Hi Beach,

Sorry you have to come back for one more time to kick c's *ss, but you will! I found surgery and immediate reconstruction to be doable and I bounced back pretty quickly, and I hope you do too. I was back in the yoga studio (following my doc's orders not to lie on my stomach, so I modified some poses) in a week, even with my drains in (I hid them in my shorts). I only had drains in for a short time, too. Little to no tissue left to drain from, I guess.

I had little to no pain; the worst part was having to sleep on my back on a wedge pillow for 3 weeks. You might consider ordering one from Amazon and have it ready when you get home. I could do everything else I needed to do in my life, so for me surgery was kind of a non-event other than caring for the incisions and watching for any kind of infection and making those doc appts. I think because I had immediate recon it might have been easier than some? It was 2 and done, I guess.

I hope you'll have an experience like mine, and that this is the end of cancer for you.

Hugs,

Claire

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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Nov 8, 2018 03:39AM claireinaz wrote:

Hi Beach,

Sorry you have to come back for one more time to kick c's *ss, but you will! I found surgery and immediate reconstruction to be doable and I bounced back pretty quickly, and I hope you do too. I was back in the yoga studio (following my doc's orders not to lie on my stomach, so I modified some poses) in a week, even with my drains in (I hid them in my shorts). I only had drains in for a short time, too. Little to no tissue left to drain from, I guess.

I had little to no pain; the worst part was having to sleep on my back on a wedge pillow for 3 weeks. You might consider ordering one from Amazon and have it ready when you get home. I could do everything else I needed to do in my life, so for me surgery was kind of a non-event other than caring for the incisions and watching for any kind of infection and making those doc appts. I think because I had immediate recon it might have been easier than some? It was 2 and done, I guess.

I hope you'll have an experience like mine, and that this is the end of cancer for you.

Hugs,

Claire

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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