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Topic: 1 tumor ILC (Stg 2), 1 tumor DCIS, 4 nodes positive.

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

Posted on: Jul 14, 2018 09:56AM - edited Jul 14, 2018 10:01AM by Paintersdream

Paintersdream wrote:

I am scheduled for a lymph node removal and mastectomy in a few days.  I am scared of this surgery and how it will leave me but want to hear from real women who have gone through this.  Please tell me your experience and choice for surgery and treatment.  I am 62, active, healthy in all other respects.  Not overweight.  Have always led a healthy lifestyle.  Shocked to learn I have cancer and ready to fight through it but want to know the real picture of what I will be up against.

My full diagnosis after several Mammograms, MRIs, CT Scan, Bone Scan, Byopsies:

Advanced Lobular Carcinoma (Stage 2) in 1 Tumor (Left Breast)

DCIS mass pre-cancer (Left Breast)

Estrogen Receptive Positive

Progesterone Receptive (weak positive)

4 under arm axilla lymph nodes (abnormal)

HER-2 negative

Doctor recommends mastectomy and full (all) lymph nodes under the arm pit removed.  Also, said it was my choice (for peace of mind) to remove both breasts.  Right Breast is clear of any known tumors. Before we found the 2nd mass in left breast (now DCIS confirmed through biopsy) Doctor was recommending lumpectomy.  I've read that some doctors do not consider DCIS to be cancer.  So confusing.

Dx 5/25/2018, ILC, Left, 1cm, Stage IIIB, Grade 1, 15/15 nodes, ER+/PR-, HER2- Surgery 7/31/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left
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Jul 14, 2018 11:03AM Peacetoallcuzweneedit wrote:

Hi Painters - I am so sorry you are here...and the beginning is so rough period...and the decisions and unknowns bring a lot of fear.

DCIS is Stage 0 cancer...it has not developed the ability to leave the ducts and travel outside or "invade" yet...when does it develop the ability to invade?? That is the question with an unknown answer. My 6cm of grade 3 DCIS with necrosis did not invade the surrounding tissue, but my right side 1mm DCIS grade 1-2 did develop the ability to invade, and therefore it became a different diagnosis of Invasive Ductal Carcinoma.

I had a double mastectomy last June - only one lymph node removed. The surgery is life changing...but I got through it...there are great threads about mastectomies and I would suggest searching "double mastectomy" using the tab on the menu. You will find so much information and feedback from other ladies having gone through the same surgery. You will have drains, and they will be a pain in the rear. The pain, at least for me, was very manageable. I would also suggest you find a certified lymphedema therapist in your area or ask for a referral. You will want to have a consult and get some initial measures for your arm and hand in case any issues arise...and they are also a great resource for getting through healing from your lymph node removal.

I am sending cyber support Painters...Heart


5/2017 Left Breast DCIS 6cm Grade 3 6/2017 Right Breast IDC Stage 1A, Tmic 0.5mm, 100% ER+/100%PR+/ HER2- 6/2017 BMX, SNB left, TEs x 2 8/2017 TE deflated -Replaced Oct 2017 Hysterectomy + ooph 11/2017 Implant Exchange June 2018 Nipples.
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Jul 14, 2018 11:13AM Moderators wrote:

Hi Paintersdream, and welcome to Breastcancer.org,

We're so sorry to hear of your diagnosis, but we're really glad you've found us. We know getting a breast cancer diagnosis can certainly be overwhelming and very confusing, but thankfully you're in the right place to get answers to all of your questions! Our amazing members here are very knowledgeable, supportive, and informative and always ready to help. We're sure others will be by shortly!

In the meantime, you may also want to join in on the Surgery forum's July 2018 Surgery thread, where you can meet others who have been through surgery this month or are facing surgery later this month. You'll get great tips, insight, and support as you navigate your own treatment.

Also, there's some very good, detailed information about what your diagnosis means to you on the main Breastcancer.org site's Your Breast Cancer Diagnosis section. This section will walk you through what each piece of your pathology report means in a clear and understandable manner.

You also mention the confusion over DCIS being considered a cancer or not. On the main Breastcancer.org site's page on DCIS, you'll see that DCIS is considered a non-invasive diagnosis which may never even become invasive cancer, and is considered Stage 0.

We hope this helps and we look forward to hearing more from you soon!

--The Mods


To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jul 15, 2018 07:36AM - edited Jul 15, 2018 07:44AM by Icietla

Welcome, Paintersdream. I am very sorry about your being diagnosed with cancer. I want to answer all your questions I may be able to help about, but I can do better with questions narrower in scope, as I am quite limited in my ability to type. I am going to post on your thread here some links to some other BCO discussions with information that will likely be helpful to you. Please read through them and also through the content linked therein.

I had bilateral mastectomy -- modified radical mastectomy and ALND on the side known to be diseased, and total (simple) mastectomy on the other side. The surgery took down to and including the deep fascia on each side. I was ready to return home about three hours from the start of that surgery. I did not have a Plastic Surgeon following the General Surgeon to tidy up my chest, and I did not have any reconstructive procedures.

The area from which your axillary lymph nodes will be taken may be the sorest area after your surgery, and for the longest time.

Prior to the surgery, tracer injections are administered in the most sensitive part of the (diseased) breast. For a half hour prior to the injection procedure, I had Emla numbing cream and an occlusive cover on the site. I moaned through two of the shots and I screamed through the other three shots. Then I wept. It was by far the worst physical pain I have ever experienced. [This is saying a lot.] Ask the Hospital personnel to do whatever they properly can to make the tracer injection procedure tolerable for you.

You may be advised to have chemotherapy. Either the weak positive on progesterone receptors or the (presently suspicious) lymph nodes might make for a chemotherapy recommendation. If any lymph nodes are found to be diseased, or if any tumor tissue is found in very close proximity to the chest wall, that might make for a recommendation of radiation treatment. If there is uncertainty as to need for chemotherapy in addition to a long course of anti-hormonal medicine, OncotypeDx testing may be done, and the results (predicting likely benefit of chemotherapy in addition to endocrine therapy) may help guide that particular decision.


My latest (Stage IVB) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Jul 15, 2018 08:28AM Icietla wrote:

ILC can be very sneaky.

https://community.breastcancer.org/forum/5/topics/864847?page=1

https://community.breastcancer.org/forum/71/topics/862161?page=1

My latest (Stage IVB) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Jul 15, 2018 08:51AM Icietla wrote:

These discussions cover a lot about preparing for and recovering from mastectomy surgery.

https://community.breastcancer.org/forum/91/topics/857555?page=1

https://community.breastcancer.org/forum/71/topics/861298?page=1

https://community.breastcancer.org/forum/5/topics/865531?page=1

My latest (Stage IVB) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Jul 15, 2018 06:56PM beach2beach wrote:

Hi Paintersdream,

Sorry you find yourself here. I was 51 when diagnosed last year. I had ILC and found on pathology afterwards LCIS and DCIS all within same tumor. Glad I Opted for a double mastectomy. I did not want to have to worry about surveillance on the other breast or even if I had opted for a lumpectomy on the cancer side. Too anxiety ridden. I had sentinel node biopsy/removal. Nodes were negative. I also went direct to implants. As for surgery itself, I did not find it to be awful. The shot to inject the dye, I agree was painful but think I was so mentally numb I didn't even care. The drains I thought were the worst..hanging there and having to clean them. I really had no pain, guess I was lucky. I walked out of hospital next day. Was up and around every day thereafter, taking breaks and resting. I stretched my arms every day to get range of motion back. I'm almost a year out. Even with only having sentinel nodes out, my armpit, especially on the cancer side is still sore and sometimes swell. Guess I am super sensitive.

Try not to expect the worst. You may actually , I'd say probably will, do very well. Please keep us informed.

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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Jul 20, 2018 06:39AM claireinaz wrote:

Paintersdream,

What concerned me was the "all lymph nodes removed" under arm. Do you mean the 4 that were +? I hope so, because removing a bunch of lymph nodes unnecessarily will increase your chance of lymphedema. You don't want that...

Otherwise, the tx plan seems doable and reasonable. I found that after knowing ILC can be hard to detect, hide even further in dense breast tissue, and more likely to be/recur in both breasts--I had a bi-lat mastectomy with immediate reconstruction. There are trade offs with all surgery, but I had five yearly "clear" mammograms, and still wound up with ILC. I didn't want to worry that something else was lurking, undetected.

The surgery/recon itself was kind of a non-event for me: little to no pain, I had nipple sparing surgery, and within 3 weeks was back to all my physical activities. I stayed 2 nights in the hospital and probably could have gone home after 1.

I too had a healthy lifestyle, not overweight, vegan/vegetarian, crazy-physical activity kind of girl. I've since decided that we don't take into consideration environmental factors and DNA/aberrant cells, that for no real reason, just get copied wrong and go haywire.

It sounds like yours was still caught fairly early. You're going to do great whatever you decide!

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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Jul 23, 2018 03:16PM Trvler wrote:

I was going to say the same, Claire. I had chemo before my surgery, and they only removed the two + nodes during the surgery which were still positive for micromets. But my surgeon told me not to let them remove any more nodes and the local doctor wanted to. He told me that radiation and tamoxifen were my 'big guns'. So far no issues with lymphedema.

I also had the bilateral but my other breast was clear.

Allison Dx 1/16/2015, ILC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- Dx 2/26/2015, ILC, Left, 4cm, Stage IIIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- Chemotherapy 3/23/2015 AC + T (Taxol) Surgery 8/31/2015 Mastectomy; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Radiation Therapy 10/14/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/31/2015
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Aug 18, 2018 11:14PM Paintersdream wrote:

An update on me, I completed my surgery (left breast removed and all 15 auxiliary lymph nodes removed). I’ve been upgraded to Stage 3 since all 15 lymph nodes had cancer. I will require 20 weeks of chemo. My surgery was on July 31. I’m almost 3 weeks post mastectomy. I never took anything other than ibuprofen. I’m still swollen in the armpit area and numb there as well. I just cut my hair short to get ready for hair loss. I start chemo on August 31 and get a port put in on August 28. I’m anxious to get going and ready to do battle with God walking through this with me.

Dx 5/25/2018, ILC, Left, 1cm, Stage IIIB, Grade 1, 15/15 nodes, ER+/PR-, HER2- Surgery 7/31/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left
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Aug 19, 2018 07:43AM claireinaz wrote:

Painters,

Chemo was difficult (at times, not always, I hope that helps) but doable. Yes, hair goes, but it grows back. I wore a wig I bought online (it was short) for about $100 when I taught at my university because I didn't want to look like a cancer victim. Everyone makes their own choices there but I didn't like the scarf look since it's obvious you're getting treatment. I lost about 12 pounds (gained back). But I kept up with my regular rather rigorous exercise routine throughout chemo and rads, which tells you it isn't the awfulness that we heard about 40 years ago. I never threw up but lost my appetite and smells were magnified to the 12th power for about a week after each infusion.

The port placement was kind of a non-event and I was thankful for it; it made infusion so much easier than getting a line put into your arm each time.

I had 4 dose-dense tx of AC and then 12 infusions of Taxol, then 6 weeks 5x week of rads. Look into dose-dense treatment if you and your doctor thinks you're a candidate for it--it seems to be a bit more effective for those of us facing a higher risk of recurrence. I did it and it wasn't too bad. Here's a link to research and dose-dense chemo.

http://www.ascopost.com/issues/december-25-2017/dose-dense-chemotherapy-in-early-breast-cancer-a-win-win-treatment-approach/

If you have any other questions, we're here. Big 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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Aug 19, 2018 05:39PM beach2beach wrote:

PaintersDream,

Sorry about all the nodes being affected but sounds like you did well with surgery and recovery so far. The armpit and numbness can last quite a while. My armpits both still swell, especially the right side and during very hot/humid days and I still have numb areas if that helps.

Keep us posted


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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