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Topic: ILC and LCIS (diagnosed yesterday)

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

Posted on: Jun 24, 2021 03:55PM

GracieGirl2016 wrote:

Diagnosed yesterday, moderately differentiated. Still trying to wrangle the process of what comes next. Have an appointment with a surgeon tomorrow but no bio marker info yet, no MRI yet, no genetic test yet, what can the surgeon tell me without this information? Haven’t figured out reading through this forum makes me feel better or worse yet. Maybe too early yet. Right now it is making me anxious, it seems a lot of people with a similar origin story that ultimately went with a double mastectomy, that scares me 😟.

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Jun 24, 2021 05:19PM Moderators wrote:

Hi GracieGirl2016! We're so sorry you find yourself here, we know it's a lot to process. Your surgical decision is a very personal one, based on many different factors, and it's certainly hard to wrap your brain around it in these early days and weeks. We hope you get some clarity on possible options at your appointment tomorrow - the more info you gather over the coming days and weeks, the easier it will be to make decisions regarding your treatment. We're all here for you!

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Jun 24, 2021 10:22PM AliceBastable wrote:

Once I had my mammogram, ultrasound, and biopsy, I saw the surgeon. She scheduled anything from that point. Some do MRIs, some don't. Genetics and stuff will be explained by your surgeon and in more detail when you see an oncologist. That's usually after surgery unless you have a huge or fast-growing tumor. So your care as it's going now looks normal. Good luck!

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jun 25, 2021 10:02AM Dani444 wrote:

I am sorry you need to be here. As others would probably agree these beginning stages are the worst. Hopefully your surgeon has more info on your pathology or an idea of when to expect it. My surgeon ordered my genetic testing prior to my surgery. I did initially have the choice between lumpectomy or mastectomy and it was so hard for me to consider the options. In the end the decision was made for me due to tumor size found on MRI. It is such a personal decision when there is a choice between the two. I found a lot of answers from this community but everyone’s story is unique. If it gets overwhelming to read through posts just stick to asking specific questions you might have. We are all here for you. I hope your meeting with the surgeon went well.

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 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Surgery 4/19/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 30, 2021 05:51AM GracieGirl2016 wrote:

Thank you everyone for sharing. I have my MRI today and we will see what it shows. Mammo and soon show a pretty small tumor, but as I read more about ILC and how tumors form, the MRI may reveal more, feeling pretty nervous frankly. Thank you all for being here.

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Aug 2, 2021 10:34AM - edited Aug 2, 2021 10:34AM by tinkerbell65

I am right there with you. I am recently diagnosed, and looking through these forums, I am overwhelmed by all the abbreviations and terminology. After the MRI and biopsy, my surgeon said the tumor involves the nipple, so I will lose the nipple during the lumpectomy, which freaks me out. I have also see the cosmetic surgeon - the two doctors work together - and the recommendation is a lift and reduction on the other side so that I match. I'm OK with that, a reduction of these DD's will make my life easier. Surgery is next week.

The tentative schedule will be 4 weeks of radiation, 5 days/week, after surgery. Luckily the hospital is a half mile away, so I can get the radiation without too much trouble.

Both doctors say I will go home the day of the surgery, and be up and around in a few days. I am taking two weeks off work. DOes two weeks off seem reasonable to anyone who has gone through this?

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Aug 2, 2021 11:55AM AliceBastable wrote:

That sounds about right schedule-wise. As far as "up and around," I felt great the same day. You might need a little more recovery with bilateral surgery. The only restriction I remember was to not lift anything heavier than a gallon of milk for a month (I think). There's a great thread called Lumpectomy Lounge where some helpful lumpectomy veterans share their experience and answer questions.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Aug 8, 2021 11:56AM tinkerbell65 wrote:

Thanks, Alice. I think the emotional recovery is going to take some time as well. I still wake up each morning thinking "I have cancer!" and I have to remind myself to just focus on what I have to do today.

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Aug 8, 2021 02:35PM DebAI wrote:

Hi Graciegirl,I was just diagnosed with ILC on THursday 8/7/21 and was going to post almost what you wrote,meeting with surgeon on the 12th ,to go over a treatment plan,I have no idea what questions to ask,what is the best treatment etc. as I am the first one in my family on either side that has BC.Good luck with all your treatments and it goes super and your healed 110%~

Debbie

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Aug 9, 2021 05:35AM GracieGirl2016 wrote:

Hi DebAI,

I was planning to post an update and your post gives me a great opportunity to do that!

I met with my initial breast surgeon (let's call her BS#1), who prescribed an MRI, and I got my blood drawn for genetic testing (all came back negative). MRI revealed 2 additional masses, one in my left breast where the cancer has already been found and another in my right, both rated as BI-RADS 4. So then went to get a sonogram to see if they could find the masses via sono, which they could not, so I had 2 MRI-guided biopsies (on separate days as they cannot do them on the same day). Thankfully, both came back as benign, so then I made a follow-up appointment with BS#1 AND made an appointment with a second BS#2 for a second opinion. Both BSs suggested lumpectomy (thankfully) and then I needed to decide who to go with. Here I simply went with the surgeon that made me feel most comfortable (#1). I have surgery scheduled for this Wednesday. So with an initial diagnosis on June 23 and surgery on 8/11, it took some time between diagnosis and treatment, all waiting for appointments, and results. I am feeling very positive about the outcome. Once I had a plan in place, it helped tremendously and hope that you will have a plan soon!

Happy to answer any questions. As many have said in this thread, I have learned that you will talk to many people and they will share their experience, and it is helpful, but every case is it's own and you need to determine what is right for you. For example, I have very dense breasts, and will likely go down the biopsy path again in my future, but I was on that path anyway and a double mastectomy was not the right choice for me now.


Good luck!


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