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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: New diagnosis

Topic: New diagnosis

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

Posted on: Jun 19, 2015 11:29AM

Kdell63 wrote:

Hi everyone,

My name is Kathleen and I was just diagnosed on Tuesday with ILC. I have 6 tumors, all about 1 cm, and they are using the grade 1-2. I met with the surgeon on Wed. It's weird because he removed my gall bladder a couple in 2013, but I know him, so that helps a bit.

So today I have an MRI. I'd like more information regarding the other breast and the condition of my lymph nodes. The ultrasound showed a very slight swelling...The surgeon already let me know that next Friday would likely be the day of my mastectomy.

I have 2 grown sons and a 9-year-old son. I'm trying to be strong and upbeat, but inside I am scared and I miss my mom.

any words of comfort would be so welcome.

Kath

Dx 6/16/2015, ILC, Right, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 6/26/2015 Hormonal Therapy 7/28/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/1/2016 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery Mastectomy: Left, Right Surgery Prophylactic ovary removal
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Posts 31 - 42 (42 total)

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Jul 12, 2015 08:23PM Kdell63 wrote:

Hello,

Yes, it's normal to panic within reason - meaning try not to make it worse for yourself by going to the scariest possible outcome. I don't have the exact statistics, but I think it's around 80% of all biopsies are negative. I know it's really hard to not worry, but the odds are in your favor.

Best wishes to you,

Kath

Dx 6/16/2015, ILC, Right, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 6/26/2015 Hormonal Therapy 7/28/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/1/2016 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery Mastectomy: Left, Right Surgery Prophylactic ovary removal
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Jul 13, 2015 02:44PM alexis39 wrote:

Thank you so much. Yes I found a lot of helpful information here. You never fully understand what someone is going thru at the time until it happens to you. I have a follow up with the oncologist tomorrow so I will find out exactly where I am and what I need to do to get thru this.

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Jul 31, 2015 08:43PM Lex11547 wrote:

H i , this. Is Lex11547,

I don't know how this works.I have had mamograms twice, an ultrasound and finally a MRI. I now have an appointment with a surgeon to review all the results. Something has showed up on two different areas of the breast that I had a lumpectomy on16 years ago.I am scared. I thought after 16 years I thought I could put this behind me. I have been going every year for my mamogram.

Every test they would say it was normal nothing to worry about. Easier said then done.

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Jul 31, 2015 09:47PM HopefulJenn wrote:

Hi Lex11547,

I'm very sorry you're here and you're scared. Has anyone mentioned a biopsy or is it in a difficult spot to biopsy? It does sound like they're covering all the bases with all the imaging you've had. I haven't had it happen to me but I have read stories on here about women having fibroids etc, removed, just to be sure it's nothing. I'm very hopeful that that's the kind of information the surgeon will tell you during your appointment! When is your appointment? I hope it's very soon, we all know how horrible the waiting and worrying is. But keep in mind there are lots of very helpful women on these boards that have gone through similar situations and will help in any way they can. I found that the worst part, by far, was the waiting but I also found that a low-dose Ativan helped me sleep and that was a big help. I wish you all the best, will be keeping you in my thoughts and please, keep us updated!

35 at dx. Slow down, calm down, don't worry, don't hurry, trust the process. - Alexandra Stoddard Dx 4/15/2015, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 5/28/2015 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 7/17/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 8/14/2015 Whole-breast: Breast
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Aug 1, 2015 02:08PM Leslie13 wrote:

Hi Lex11547,

Yes, panicking is very normal. I'm almost 4 months out from my initial DX and I panic every time I'm waiting for test results. As you can see by my post I have multiple tumors in both breasts. And they didn't biopsy everything at once.

Distraction works best for me. Funny movies, shopping, time out with friends, and about anything that doesn't involve the Big C is my way of coping. If I spend too much time researching cancer or thinking about it, I start spiraling down.

I'm sorry you are going through this after already beating it once. Hang in there. I get my revised treatment plan and surgery scheduling this Thursday and am having a long 6 days, so don't want to invalidate your fears. Do whatever works to feel better. I keep a standing weekly massage, so I always have a positive thing to look forward to. I think finding good things to get us through these times helps. Best of luck to you.
Dx 4/17/2015, ILC, Both breasts, 3cm, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- Surgery 9/29/2015 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole)
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Aug 1, 2015 09:12PM Lex11547 wrote:

Thanks for the encouragement. My appointment was for this Monday but.it got changed to Thursday. I picked up the reports and disk for the surgeon to review. I tried to make sense of the reports. The reports said there were 2 areas on the left breast. Something about the nodes. My doctor tried to convince me it maybe nothing. After the ultrasound I had pain for almost a week. Is that normal?

The. Doctor said it is recommended to have another MRI in 6 months but said maybe I should just go see a surgeon. I hope I don't need another MRI. He complained I moved too much. I am claustrphobic, excuse spelling. I told him I had to fight to stop hyperventibg.

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Aug 6, 2015 05:22PM alexis39 wrote:

Just checking on how you are doing?

Alexis

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Aug 6, 2015 10:24PM HopefulJenn wrote:

I've been thinking about you, too, Lex11547. I hope you have more information and hope you're doing well!

35 at dx. Slow down, calm down, don't worry, don't hurry, trust the process. - Alexandra Stoddard Dx 4/15/2015, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 5/28/2015 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 7/17/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 8/14/2015 Whole-breast: Breast
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Aug 7, 2015 10:59PM Lex11547 wrote:

Thank you for asking how I am doing. I will be having a biopsy in 2 areas plus the lymph nodes. The doctor said wait until after the weekend we had planned to go away. He said it would ,it be a problem.

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Aug 18, 2015 08:51PM Lex11547 wrote:

I am scheduled for biopsies next Monday. I am scared. I am dreading the pain. It will be done with a local. I don't know how long it will take to get the results. I am still hoping after this it is

nothing.

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Sep 12, 2015 08:15PM hlya wrote:

I read a post here couple of years ago, lots of women (around 50%) didn't have their tumor shown up in mammo, US or even MRI, and the tumor didn't form a lump either.

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Jun 13, 2017 03:18PM alexis39 wrote:

Update - found all the posts from when I was first diagnosed back in June 2015. Happy to report, went thru chemo, then lumpectomy and then 33 sessions of radiation and started on anaztrole in January 2016. So far, doing great, had lots of bumps along the road and have come thru it all. When the last week of radiation rolled around I was pretty much "cooked", so they gave me cream, tried probably about 7 and none helped or worked. So I thought back to when I was a kid and I lived near the ocean, if I hurt myself I remember my dad telling me to dip it in the salt water, so I got some sea salt, not regular table salt and put in 2 cups and 1 cup Epson salts in lukewarm water. Within days, my big pussy blister healed and when I went to my surgeon 2 months later, he wanted to know if I had gone for radiation and when I told him how long ago, he was shocked, no burn marks or even signs. Amazing. Then 4 months after starting the anastrolzole, I had tennis ball swellings in my neck on both sides plus my feet swelled up that I could barely walk. Some told me to go and see an acupuncturist, I am scared of needles but I went and have never looked back. I feel like I did before I was diagnosed, I have my energy back, feel really good and lost 20 pounds. My body was so full of toxics and my lymph system was blocked, so it swelled up, the western doctors don't tell you all this stuff.

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