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Topic: Things are Moving too Fast!

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

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Posted on: Oct 2, 2018 09:08PM - edited Oct 28, 2018 03:13PM by keeshondmom

keeshondmom wrote:

Diagnosed with ILC last week after biopsy; met with surgeon today who felt lymph node involvement. When she presented my case this afternoon to her colleagues, it was felt I had at least 6 lymph nodes that are involved. I have pretty much decided I will have to have a mastectomy, but I'm confused about what happens next...chemo and/or radiation. Surgeon says depends on a lot of factors...I'm so overwhelmed and confused. Originally was going to travel to Seattle (about 2 hours away) for second opinion; now it sounds as if I don't really have time to do that. Help

Thanks so much for all of your replies! Helps so much to hear from others. Like all of you, I want to wait although I'm sure ultimately I will have the mastectomy. One important detail I forgot to share...17 years ago I had a melanoma removed surgically from my left arm. This surgeon fears it may actually be melanoma that is in the lymph nodes and not breast cancer cells. I told her I know my lymph nodes were not biopsied at the time and that seemed to run up red flags for her. I know at the time the melanoma was excised, I was told the margins were clear. I have been vigilant about having skin checks by dermatologists and although I have had several basal cell cancers removed, I have not had any more melanomas. Earlier today I spoke with my nurse navigator who gave the impression that waiting should be fine. Then late this afternoon she called after speaking with the surgeon and she seemed to have changed her tune and thinks I should have the surgery Monday. That just seems too early! A big part of the problem is that the surgeon's schedule is pretty full for the next month.

I do have the path report from the biopsy. The tumor is super small: 6mm. I am ER and PR positive. I am having a Pet Scan tomorrow. On Friday the surgeon will call again

Update (Oct. 28)...just returned from Seattle Cancer Care Alliance where I met with a breast cancer surgeon, oncologist and radiologist. Am now scheduled for a lumpectomy middle of Nov; follow ups with radiation and "the pills" (can't remember the names! Lol!) Not sure I'll really need the radiation, but will decide after the surgery. Am so thankful to people on this site for urging me to wait and get a second opinion!

Dx 9/29/2018, ILC, Left, <1cm, Stage IA, Grade 2, ER+/PR+, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Oct 2, 2018 09:11PM rachelcarter35 wrote:

I pushed back and got a second opinion. It made me more confident in my decisions. You are in the hardest part. It will get better once you have your treatment plan in place.

Dx 2/21/2018, DCIS/IDC, Both breasts, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- (FISH) Surgery 4/24/2018 Mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement Chemotherapy 6/15/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Chemotherapy
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Oct 2, 2018 09:27PM - edited Oct 2, 2018 09:29PM by Georgia1

So sorry! This is the worst part, but I agree you have time to get a second opinion. Things to do:

Breathe.

Ask for copies of your ultrasound, mammogram and biopsy reports.

Get a copy of the book "Navigating Breast Cancer" by Lillie Shockney for clear, practical advice.

Come back here as much as you like to ask questions. A lot depends on ER and HER status, your age and your family history. We are definitely here to help.

And yes, I'd get that second opinion.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 3, 2018 10:28AM dakrock wrote:

So sorry this has happened.   I would definitely get a second opinion.   I waited 2 months before I went ahead with the surgery.   They put me on Letrozole immediately in December when I had the biopsy but my surgery wasn't until February 23, 2018.   I had to get my head in a good spot.  Otherwise I was a walking zombie.   When it came time for the surgery I was ready.   Don't let anyone hurry you.  You have to be comfortable with your decisions.    Good luck  and keep us posted.

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/4/2017 Femara (letrozole) Surgery 2/22/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Oct 3, 2018 11:14AM rachelcarter35 wrote:

There are some great threads in here about all aspects of treatment. It's a great resource for info. You will get worst case stories but also good news. My husband started asking me if I was going to cancer college because I did a lot of research.

Dx 2/21/2018, DCIS/IDC, Both breasts, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- (FISH) Surgery 4/24/2018 Mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement Chemotherapy 6/15/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Chemotherapy
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Oct 3, 2018 11:54AM wallycat wrote:

Keeshondmom, I'm so sorry you are joining us. Your post is sparse with details...ILC because of a biopsy? Or have you had other type of surgery? Your doctor "felt" cancer...take that with a grain of salt, especially ILC, which grows flat and thin.

Deep breath. Another. If you wanted a second opinion, you have plenty of time for it. I'm not sure why you think otherwise, but there is always time for second opinions; even third opinions. Never believe a doctor who thinks they can detect cancer by touch. Some even get it wrong looking at imaging. My radiologist refused to acknowledge I had cancer looking at my MRI. She was wrong. I had another doctor convinced that because my cancer didn't show up on ultrasound, I didn't have it. **shaking my head**

Find doctors you trust and are comfortable with. Give yourself time to absorb the information. Have someone go with you to ensure your facts are straight (or record your appointment so you can play it back at home). ILC tends to be slower growing so if someone is telling you that you have to rush to a decision, that isn't the case majority of the time.

I wish you well and I hope you can find a doc who can put your mind at ease, such as a cancer diagnosis offers.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Oct 3, 2018 12:12PM Lula73 wrote:

What Wallycat said...

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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Oct 7, 2018 11:07AM beach2beach wrote:

I ditto Wallycat. Your lymph nodes could just be larger than normal but nothing ominous and completely normal for you also. For someone to feel it and say they think its cancer is a bit premature. Breast cancer and lymph node involvement is not always a given. If you are a unsure in any way with the information you are being given, or just feel uneasy with the surgeons manner, I'd get a second opinion too.

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 7, 2018 01:38PM keeshondmom wrote:

Thanks so much for your input! Having Cat Scan tomorrow; surgery postponed as per surgeon's office when Pet Scan revealed no lymph node involvement. Have appt at Seattle Cancer Center at end of month for second opinion. So thankful for the responses on this forum urging me to take my time and get a second opinion

Dx 9/29/2018, ILC, Left, <1cm, Stage IA, Grade 2, ER+/PR+, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Oct 8, 2018 04:23PM dakrock wrote:

Good news that you postponed and Pet Scan showed no lymph node involvement.   Remember you can always get second opinions.  You are in no hurry to rush and begin anything until you are comfortable with your decisions.   Keep us posted.

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/4/2017 Femara (letrozole) Surgery 2/22/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Oct 8, 2018 10:57PM ReggieH wrote:

So glad that you were able to slow things down so that you could get better control of the process. And getting a second opinion will help you get to the decision that’s right for YOU.It’s way too easy to follow what the doctors tell you because you’re confused and scared and totally out of your depth.

Dx 5/1999, IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+, HER2- Surgery 6/11/1999 Lumpectomy: Right; Lymph node removal: Right, Sentinel Hormonal Therapy 2/16/2000 Femara (letrozole), Liquid tamoxifen (Soltamox) Dx 4/20/2018, ILC, Right, <1cm, Stage IA, Grade 2, ER+/PR-, HER2- (IHC) Surgery 5/9/2018 Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 6/23/2018 Femara (letrozole) Chemotherapy CMF Radiation Therapy Whole-breast: Breast
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Nov 28, 2018 07:52PM keeshondmom wrote:

Update Nov 28: Had lumpectomy Nov. 19 with removal of 4 lymph nodes. Just received amazing news of no cancer in lymph nodes or margins! Yay, yay, yay! But...now am a little unsure about radiation. I know that's the "gold standard" for treatment, but....with clear nodes (four) and clear margins...if anyone sees this post and can comment, I would really appreciate it. Meeting with surgeon in two days. I'm sure she will want me to have it, but....Would love to hear opinions ...

Dx 9/29/2018, ILC, Left, <1cm, Stage IA, Grade 2, ER+/PR+, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Nov 28, 2018 08:08PM rachelcarter35 wrote:

Congrats on clear nodes and margins!

Dx 2/21/2018, DCIS/IDC, Both breasts, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- (FISH) Surgery 4/24/2018 Mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement Chemotherapy 6/15/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Chemotherapy
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Nov 30, 2018 08:38AM claireinaz wrote:

All I know is that lumpectomy with radiation seems to give the same % of protection as BMX with no radiation. Radiation wasn't hard at all for me. It was simply tedious: 15" a day, 5 days a week, for six weeks. Compared to 5 months of chemo, 6 more weeks for just a few min a day was simple.

My philosophy was to do everything offered to me from modern medicine to give me the best change to kick ass on cancer, but I had 6 positive nodes and was considered high risk. ILC also has a tendency to be multifocal and grow in both breasts, so a year after radiation I had a BMX with reconstruction.

I also had dense breasts, which hid the problem from mammos for 5 years. My scans always reported "all clear", which apparently wasn't true.

You can refuse any treatment, but you should talk to your oncologist seriously about all treatment plans for you, and get her take on why radiation is recommended. As I said, it was a non-event.

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 12, 2018 12:41AM keeshondmom wrote:

Thanks! I am going to go through with the radiation...guess I should hedge my bets! I know I was so lucky this was caught so early but so bummed at all the pain I'm now having 3 (maybe 4?) weeks post surgery at the lymph node excision sites. Just seems weird that I'm feeling worse instead of better. Have talked with nurses twice and told it sounds "normal". Am taking Ibuprofen to take the edge off; have never found Tylenol to be very effective. A couple nights have had to take hydrocodone which I hate doing but...

Dx 9/29/2018, ILC, Left, <1cm, Stage IA, Grade 2, ER+/PR+, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Left; Lymph node removal: Left, Sentinel

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