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Topic: ILC Journey

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

Posted on: Jan 10, 2019 08:43AM

betterdazeahead wrote:

Hey all!

Just curious on here if anyone wants to discuss their journeys with ILC for us newer diagnosed patients?

I am 41 and have multi centric ILC and would really like to find others who have been in a similar spot (being young with ILC and having multiple tumors). I am interested in learning how you were treated (surgery, chemo, radiation, hormones) and how you are all doing now. Just over all general advice on what to be asking and looking for to make sure I am being treated properly.

I was diagnosed 12/3/18. Started on Tamoxifen for a month while waiting on surgery (1/31/19). The tamoxifen made me feel absolutely horrible - I am absolutely not looking forward to starting it back up after my surgery. I am scheduled to see MO and RO these next 2 weeks. Surgery will be a BMX with reconstruction. 

If I missed anything ask away I am an open book :)


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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Jan 10, 2019 08:49AM Jenkins00 wrote:

Hi betterdazeahead - I was diagnosed 8/2/18 after a routine mammogram and two biopsies. Both came back ILC, grade 1 and grade 2. No option for lumpectomy. Chose BMX and I ended up having 8 multifocal tumors in left breast, with two tumor's being the biggest both at 2cm. Lymph nodes were clean so no radiation. MammaPrint came back High Risk, Luminal B and I start 4 rounds of TC on Monday.

Dx 8/2/2018, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/26/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/13/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 10, 2019 08:57AM betterdazeahead wrote:

Hi Jenkins00 thanks for responding! How was your recovery from you BMX?

Do you know if they ran ki-67 on you? I am reading conflicting information on how it is used...my doctors have said they will run a mamma print too. My Ki-67 is high so worried mamma print will be as well.  

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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Jan 10, 2019 09:27AM Samnjb wrote:

hi

I have ilc and am also pre menapause. I am 38, Mine was 1.4cm with another one that was .5.

I had bmx as well. My ki 67 was 30 my oncotype was 12 and Mammaprint was low.

I’ve read somewhere for premenopausal women ki67 could be dependent on menstrual cycle. I found the Mammaprint to be more reassuring as I think I’ve read it’s been studied in ilc more, maybe I read that wrong. But I wasn’t comfortable after the oncotype and wanted the second test for piece of mind so my doctor ran it

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Jan 10, 2019 10:35AM MoonGirlJess wrote:

I was diagnosed June 6 after I had my implants taken out as I thought my implants had gone south but, in fact it was cancer that everyone missed. I was 41 at the time. My left breast had multifocal tumors 2.4 cm and 1 cm with axillary node involvement. I met with he breast surgeon and opted for a mastectomy (I wanted a BMX but he said not a great idea) so my left came off after I got my drains out from my implant removal. Mastectomy was June 21. Port went in a couple weeks later. Chemo started after I healed, July 30. I finished chemo 2 weeks ago. I start rads this month. Then I will have the right breast off prophylactically. Not sure if I will do tamoxifen or go for ovarian shutdown with an AI. I had 2 different opinions from 2 oncs. I opted for no reconstruction as I was pissed no one could figure out that I had visible and palpable cancer and breast implants.

I had my mastectomy and I did NOT have clear margins. Cancer went to my chest wall. Although my surgeon said he dissected it all out. Thus, insane chemo and now rads for 6 weeks. Since I had node involvement and did not have clear margins they didn’t do an Oncotype. My Ki67 was 10% but then I’m pleomorphic so my grade shot up to Grade 2. I have since requested an Oncotype (I’m on the cusp with 3 positive nodes).
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) Radiation Therapy 1/20/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/29/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic mastectomy: Right
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Jan 10, 2019 11:20AM Dani444 wrote:

I was diagnosed in August 2018 after noticing my nipple had started to pull inward and then I had a large indent in my breast. I had an additional biopsy after my MRI due to satellite lesions. The biopsy for the other areas were negative for cancer, but my BS noticed another area of concern on the mammo for clip placement. Tumor board decided my cancer was too large for a lumpectomy so I had an UMX with direct to implant. My tumor turned out to be 4.8 cm.

My lymph nodes looked good on all my imaging so that is why we felt comfortable with direct to implant. Two of my nodes came back positive, one with extranodal extension. My BS wanted to take me back for AND but brought my case back to the tumor board. They decided I could do radiation and wouldn’t gain anything with the full dissection. My mammaprint came back low risk so MO said no chemo. I am premenopausal so I will start tamoxifen after I complete rads. I had not had a mammogram in years, and when I asked a pathologist that I work with how long he thought my cancer had been there, his answer was “years”. So I kinda beat myself up about not being diligent with yearly screening. But who knows ILC is a sneaky little beast anyway

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 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/5/2018 Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 10, 2019 06:54PM Jenkins00 wrote:

betterdazeahead- I will admit my recovery from BMX was longer than I thought it would be. I ended up having two revision surgeries in November.

My Ki-67 was high on the grade 2 tumor and low on the grade 1 tumor. They used the grade 2 tumor for the MammaPrint.

Dx 8/2/2018, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/26/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/13/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 11, 2019 07:25AM betterdazeahead wrote:

samnjb - what grade were your tumors or was it one tumor? what stage were you diagnosed at?

moongirljess - you just brought up an excellent point that I had not been made aware of yet. Ovarian shutdown. Thanks it is going on my list of questions for Monday at MO!!!! I was planning on talking to her having read that ILC is sneaking and one place it likes to go is the ovaries - my mom had ovarian cancer and I was questioning prophylactic removal. Tamoxifen makes me feel like an alien with how sick I was this past month and I would do anything to avoid going back on it for the 10+ years they say I will need it.

dani444- thanks for sharing your story! my nodes too look good on imaging but I cannot help but worry they are not especially when reading my pathology report and it says 2 of my tumors show vascular lymphatic invasion present - maybe it is wrong or means nothing but seems like an important piece of all of this.

jennkins00 -  Sorry to hear you have had to have 2 revisions, I hope now all is better. I find that very interesting that the higher grade tumor was higher ki-67 and low on the grade 1 tumor. I wonder if there is a correlation? All 3 of mine are grade 2 but the ki-67 is 38%, 39% and 21% on them. I really just want my mastectomy over and done with to know which direction the rest of this journey is going in and to have the information on the mammaprint or the onco type. I am such a planner the not knowing certain portions of this is driving me a little batty.

LADIES - Thank you all so much for your responses, it really is comforting knowing I am not alone and hearing your journeys which added more knowledge for me to be better prepared as I move forward. If ya'll think of anything else, I am all ears! THANK YOU!!!!

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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Jan 11, 2019 08:22AM - edited Jan 11, 2019 08:23AM by Samnjb

hi, my tumor was grade 2. There were 2 tumors, they said same cancer. The bigger one (1.4cm) was the one that they ran the oncotype and Mammaprint on. The other one was fairly small, I think about 5mm. I had a VUS in my genetics for palb 2 as well as I emotionally didn't handle the news very well and could not imagine living with my boobs after all this. So I hadn't bmx

My nodes (3 of them) were completely clear. As a side note, I have 3 kids and breastfed all 3 for over a year. I had just finished nursing my third. It broke my heart to have masectomy but I am on my journey now and trying to put the pieces back together. I wish you all the luck and if you can have your doctor run both tests. I found the Mammaprint to Be very reassuring


Oh and I’m stage 1a

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Jan 11, 2019 12:00PM betterdazeahead wrote:

Samnjb very interesting I was wondering if the higher the grade with high ki-67 happened to correlate to where oncotype will be. But that doesn't look like the case that happened with you. I think it is a good idea to run both onco and mammaprint and will definitely ask my doctor if we can do that. Awe 3 little ones - how old are they? I have 2 kiddos but mine are almost 16 and 12 - I sure do miss the younger years :)

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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Jan 11, 2019 10:37PM - edited Jan 11, 2019 10:38PM by Meow13

I was 53 and postmenopausal at dx. The biopsy showed 2 ilc tumors 1cm kind of close to skin and nipple, multicentric possibly multifocal. There was a suspicious area on MRI. I did a single mx on left. The pathology showed 1 ilc and 1 idc 1cm lesions but they were separate occurrences one grade 1 and other grade 2. Er 95% positive but Pr 0% so negative, her2 negative. The suspicious area turned out normal. No nodes but oncodx was 34, not sure which tumor was tested. I didn't do chemo but AI drugs for 4 years. I am 7 years out no cancer.

I did DIEP reconstruction. Still remain in excellent health but have lingering joint pain from drugs.

DIEP results were excellent.

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Jan 13, 2019 02:12PM vlnrph wrote:

For all you pre-menopausal ladies, has anyone suggested genetic counseling? With smaller families these days, a mutation can hide for generations, being passed down through male relatives giving one little or no history.

My ILC was not multifocal/centric but had probably been there for years before it was clearly seen on a mammogram. Architectural distortion in dense tissue was the description given prior to diagnosis. Follow-up ultrasounds were always unremarkable. My other tumor was IDC which was only found on MRI.

I expected it to come back at some point so was diligent about obtaining imaging. I liked the idea of scanning the contralateral side annually because in the process they would capture views of the operated area and be able to compare them with older screenings. It was quite a shock to learn that, instead of developing a 'simple' local recurrence, metastatic disease had attacked my spine..

IDC too! 🎻💊👪🐩 🇫🇮 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jan 13, 2019 02:36PM Meow13 wrote:

vlnrph, how are you doing on faslodex and versenio? What dose and how are the side effects?

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Jan 13, 2019 03:10PM - edited Jan 14, 2019 03:42PM by Jenkins00

betterdazeahead- I am finally healed however flat and the other side half flat. PS is leaving me like this until I finish chemo. I had so many issues with the BC foob he doesn't want to risk anymore delays.

I am like you as for being a planner. It was very hard for me in the beginning waiting and not knowing. Still struggle as I have my first chemo tomorrow.

Vlnrph- I had genetic counseling/testing done since my Mom is a 20 year BC survivor and I have a son. I am also premenopausal.

Dx 8/2/2018, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/26/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/13/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 13, 2019 09:15PM vlnrph wrote:

Glad to know Jenkins addressed the possible genetic issues especially with her mother having had disease - but nice to be a 20 year survivor.Good luck on starting chemo. I found TC to be pretty easy. Have you thought about using cold packs for your hands in an attempt to avoid neuropathy?

Meow and I are quite similar except my white pet was a poodle! And she lasted 4 years on aromatase inhibition while I couldn't tolerate the side effects. The alternative anti-estrogen I'm currently on (Faslodex injections) seems to be giving me night sweats so I guess that tells me it's working. My tumor markers are down to double digits.

The Verzenio dose had to be decreased to 100mg twice a day when the first week messed up my gastrointestinal system to the point I couldn't eat or drink enough and became dehydrated. I now use FiberCon to manage the diarrhea instead of loperamide. I'm hoping for a nice long run on these agents, along with IV Zometa every month.

IDC too! 🎻💊👪🐩 🇫🇮 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jan 13, 2019 10:27PM Meow13 wrote:

I had heard the verzenio can cause horrid diarrhea. Glad your tumor markers are down.

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Jan 14, 2019 01:57PM - edited Jan 14, 2019 02:00PM by dakrock

vinrph

Yes I am doing genetic counseling now.  I had 36 genes  tested but have not gotten the results back yet.  I had surgery for ILC and MX on my right breast In February 2018.   About 5 months later I developed a melanoma on my face.  Had to have a plastic surgeon remove it and then margins were not clear enough so had two surgeries for the melanoma.   My breast surgeon suggested I have the gene mutation test done.  I am waiting for results.  He said it is rare but it does happen that melanoma and breast cancer can carry the same gene or whatever they carry.   Hoping they are not they same. 

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant
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Jan 14, 2019 03:49PM Jenkins00 wrote:

vlnrph - Yes. The nurse today iced my hands and feet for me. I didn’t even have to ask. I am hoping TC will be pretty easy. Fingers crossed!

I have night sweats now. I’ve had them for years off and on.

Good to hear your tumor markersare down.


Dx 8/2/2018, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/26/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/13/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 14, 2019 04:04PM beach2beach wrote:

I was diagnosed by biopsy only found ultrasound. Diagnosed initially with IDC but after surgery it was changed to ILC also with DCIS and LCIS. 9mm I had chose to do a BMX. No chemo or rad. I do take Tamoxifen and so far not too bad of side effects. Mostly dryness and little dizziness. I had genetic testing done, everything came back negative. I'm one year out and so far so good. Guess I'm lucky with the side effects of tamoxifen

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 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 15, 2019 08:21AM - edited Jan 15, 2019 08:24AM by betterdazeahead

vinrph - I had genetic test ran by my gyn before I was diagnosed however yesterday I saw my oncologist and she wanted me to go to the genetic counselor as my family history is extensive for cancers yet the panel that was ran on me found nothing not even of insignificance so she wanted to make sure everything that could be ran was.

Jenkins00 how did your 1st round go? Yesterday I was told that there is no way chemotherapy is off the table at this point for me after my BMX. I am seen at MD Anderson in Jacksonville but my MO is concerned with the complexity of my case so Huston is also going to be involved. Felt better having more of an idea of what is yet to come but still that planner in me is having such a hard time without a set plan laid out in front of me at this point.

Have any of you done shots to shut down your ovaries or ended up doing a hysterectomy during all of this?

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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Jan 15, 2019 10:44AM - edited Jan 15, 2019 04:27PM by Jenkins00

Betterdazeahead - My first round went well. The nurses were wonderful and very patient. Feel okay today. Not 100% but managing. Mostly the steroids causing this. No shots. I had a partial hystercomy in 2013 and have my right ovary left which is still producing estrogen. My oncologist is hoping chemo will throw me into menopause. If not we will discuss after I finish chemo of having it removed or block it with hormone therapy.

Dx 8/2/2018, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/26/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/13/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 15, 2019 11:06AM betterdazeahead wrote:

Jenkins00 I am happy to hear how well you are doing!

My Mom had ovarian cancer and with ILC liking to sneak to the ovaries we discussed yesterday using shots to shut down my ovaries, she basically said to use that like a trial run to see how my body would handle a hysterectomy.

This past month they had me on tamoxifen (I just stopped it this past week since I had to leading up to surgery - I felt like a zombie on it and am so very thankful to be off it for now) since we have had to wait so long for my surgery to happen they wanted to try to slow the growth down while we waited. I am shocked to see that I have missed my cycle so far. 

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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Jan 15, 2019 11:40AM MoonGirlJess wrote:

I was diagnosed at 41 and premenopausal. I have no genetic mutations. My family had one case of BC (probably) but she was a great aunt in her 80s and she did nothing about it, or so I’ve been told. She has been deceased for decades so who knows. The geneticist said I wouldn’t have any mutations when I met with him and he was correct. I was shocked how inexpensive the testing was and how quickly I got my results back. That was a nice change.

Just found out yesterday now I will have 7 weeks of radiation (instead of 6 weeks) starting Monday. I hate this 🤬 BC

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) Radiation Therapy 1/20/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/29/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic mastectomy: Right
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Jan 15, 2019 01:34PM betterdazeahead wrote:

Hey MoonGirlJess - I too am 41. Sorry to hear they have changed the length of your radiation! 

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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Jan 15, 2019 08:16PM vlnrph wrote:

Too many physicians are simply sending orders for testing instead of referring people to genetic counselors first!

The issues are so complicated, you really need an expert at your side. Most busy gynecologists will not have time to fully understand and explain options. Even if current analysis reveals no known mutations, you want to have a relationship with a master degreed professional who stays up to date and can revisit your situation in the future.

Not all companies look at the same genes which means somebody should figure out the best lab to get your sample and provide the data you will rely on. I am aware of certain ethnic nationalities who have rare but higher risks (not just Ashkenazi Jewish folks with BRCA - their statistics are pretty well recognized everywhere by now)

IDC too! 🎻💊👪🐩 🇫🇮 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jan 16, 2019 01:39PM betterdazeahead wrote:

I couldn't agree more vinrph!

I am finding it very interesting within my family - my dad's Mom, and his sister both had BC. One of my cousins on that side (Grandmas side) is very into genealogy which has put us in contact with other more distant family members, so I reached out to him to see if he has any other information on ANY cancers on that side of the family. Low and behold reaching out to him I found out his Mom also had BC, we have a distant cousin as well also BC, we have another female cousin with lung cancer,  we have an Great Aunt who had pancreatic cancer and he found that our Great Grandma died at 57 of cancer - unfortunately the death certificate isn't legible as to what form it was.

Now what I know is myself, my aunt, and 2 cousins all with BC have had gene testing ran and no known mutation. However, I would venture to say with ALL Females (no history we can find on that side of the family with any males with cancer) there has GOT to be a genetic link here. I am the youngest to be diagnosed and if anything I want as much information as I can gather for my daughter and any other female relatives on that side of my family for them to be more vigilant.

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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Feb 16, 2019 03:48PM betterdazeahead wrote:

Thought maybe we can use this thread as a check in for all of us to see how everyone is doing.

Since my last post I had my double mastectomy, found out my staging is different then they originally thought. Now I am waiting to heal before I can begin my chemo. Anyone on here with any experiences with AC+T?

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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Feb 23, 2019 07:46AM 60notpretty wrote:

Hi all,

On feb 8th had a lumpectomy for DCIS. Results came back in feb 14th with DCIS and ILC 1.1cm. I now have to go back next month for a sentinel biopsy. They haven’t even staged it yet.I hate that it takes so long for everything. I can’t start radiation until we find out whether I have to have chemo or not. So frustrated... I really wanted to get this behind me before summer.

60notpretty Dx 12/13/2018, DCIS, Right, Stage 0, Grade 2 Surgery 2/7/2019 Lumpectomy: Right Dx 2/14/2019, ILC, Right, 1cm, Grade 2 Radiation Therapy Surgery 3/20/2019 Lymph node removal
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Feb 23, 2019 08:02AM betterdazeahead wrote:

Hi 60notpretty - I am sorry you have had to find out group here. I hear you on wishing everything was behind me by summertime! What I had hoped was going to be quick is turning out to make 2019 a year I wish didn't exist by the time they say I will be moving forward it will be the very end of the year or start of 2020.

Isn't waiting around the worst?!?!?!? I hope your wait on the sentinel biopsy goes quickly for you and that all turns out as well as it can. ((((HUGS))))

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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Mar 8, 2019 02:39PM 60notpretty wrote:

Thank you betterdazeahead, and yes waiting is the worst! I have pre-surgery scheduled for Monday, and surgery sentinel node surgery for the 20th so not too much longer now. ((hugs)) to you too!

60notpretty Dx 12/13/2018, DCIS, Right, Stage 0, Grade 2 Surgery 2/7/2019 Lumpectomy: Right Dx 2/14/2019, ILC, Right, 1cm, Grade 2 Radiation Therapy Surgery 3/20/2019 Lymph node removal

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