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Topic: opinions/decision making

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Feb 10, 2021 04:31PM

shanarose wrote:

Hi everyone. I hope you are all doing well :)

I am trying to process some information and make some difficult decisions. Hoping to bounce my options around here and get some support/feedback.

I am a 40 year old female. I was diagnosed with LCIS/ADH/ALH in July following a lumpectomy. I have been closely monitored for several years because my mother was diagnosed at age 39 and my maternal grandmother had breast cancer as well. I am also Ashkenazi Jew.

My choices are the typical; closely monitor with MRI, mammo and Ultrasound (with or without chemoprevention)

bilateral mastectomy (preventative)

I have already been through my round of MRI which is leading to more follow up because I have busy breast

Over the years, I have had a total of 3 or 4 biopsies

I am not sure I can continue living with constant fear, check-ups, extra testing, biopsies

i also feel like choosing the mastectomy is dramatic/drastic

Would love some opinions. Thank you all so much for being here

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Feb 11, 2021 02:58PM prepmom wrote:

Hi Shanarose - what a beautiful username! I'm sorry that you find yourself here. I don't know if I can be helpful but I will share my experience & decision making process with you. Remember, we are all so different in so many ways and my decisions may not be the best for you.

I'm now 52, but at 50 I was diagnosed with DCIS in my left breast. This was found after years of many 'call backs' and 3 benign biopsies. Very high density breasts. Like you, I am an Ashkenazi Jew and my mother was diagnosed with BC at the age of 48 (I'm so grateful to say that she is doing great!).

After the initial diagnosis, I saw a BS at a highly regarded BC Center and she ordered an MRI. The MRI required 2 additional biopsies, one on the left side and one on the right. The right side came back as benign, but the left was LCIS. The quadrant that the DCIS and LCIS was found was particularly 'busy' with ADH as well. Upon further review of the MRI by the BS and her radiologist, as well as a meeting of their tumor board, we went from 0 to 60 very quickly. They were certain that the cancer was in the skin, possibly in the chest wall, and they were expecting to find invasive cancer hiding as well. They told me that a bilateral mastectomy was necessary and there was no way to spare the skin. My DCIS went from lumpectomy / radiation to BMX with no reconstruction (not a candidate for a flap) and radiation at the chest wall. They even suggested doing a very large excisional biopsy and if they found invasive cancer, starting chemo immediately to shrink the tumor. What?????

Needless to say, I sought a second opinion at a NCI designated hospital. They strongly disagreed with the first opinion and were even willing to try to get good margins with a lumpectomy. However, the BS there (who is now my surgeon, who I love) told me that based on the DCIS diagnosis and family history, the surveillance would be intense.

The panic at the first opinion, all of the call-backs, biopsies, etc made it an easy decision for me. Notice I said easy decision, but not process. I decided that I couldn't go through this again, if at all possible. But that said, it was not as easy as many friends stated "I'd just get rid of them". When you're actually there it can be so much harder. My surgery and reconstruction went well. I'm fairly happy with how I look, but I do still have some discomfort. Not most people's experience, but it is mine. That said, I'd still do it again.

I think that you're in a good spot where you can take your time & do your research. Most importantly, come to the decision that is best for you with the information you know right now. I really hope this is helpful. Choices are wonderful, but they're also so hard.

I wish you the very best.

Dx 5/24/2019, LCIS/DCIS, Left, <1cm, Stage 0, Grade 2, 0/5 nodes, ER+/PR+ Surgery 8/13/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/3/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 13, 2021 12:00AM - edited Mar 13, 2021 12:09AM by Kay2011

This Post was deleted by Kay2011.
Dx 7/2019, LCIS, Right Surgery 8/14/2020 Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 13, 2021 12:55AM cyathea wrote:

Hi shanarose, these decisions are so hard! Like you, my family history caused me to do aggressive surveillance. Unfortunately, lobular is sneaky and even having ultrasound along with mammograms didn’t catch my cancer early. My BMX was an easier decision because I was more concerned about survival than scan anxiety, but before I got the news about my bone lesion, I was seriously considering keeping my breasts and doing what my sister did

I got a flat reconstruction and I’m happy with the results but it has not been an easy road with lymphedema. Next week is my one year anniversary from my surgery and my chest still has some pain sensitivity. I’m also doing rehab on a frozen shoulder, which will get better, but it is very painful. I am also numb and have no feeling under one arm. I had an excellent surgeon but these things can happen, so it is good to be prepared for the possibilities.

That said, my Mom had two separate mastectomies (flat) and has not had so many issues. The single MX and chemo allowed her to live cancer free for about 30 years.

My sister’s cancer was caught early enough that she had a lumpectomy, radiation and Tamoxifen. She was 36 when diagnosed and I’m so happy she could keep her breasts. She’s been cancer free for over 10 years.

Please know that whatever you decide will be what is right for you. If you do decide to do a BMX, knowing the potential ongoing issues that you could face and accepting them before they happen can help you live without regrets if they do happen to you. The “expect the worst, hope for the best” mentality has helped me.

I wish you the best in making your decision and if you do decide on surgery, I hope you can avoid any complications. ((Hugs))

Dx 6/17/2019, DCIS/ILC, Right, 5cm, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 10/8/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/17/2020 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/15/2020 Other Radiation Therapy 6/1/2020 3DCRT: Breast, Lymph nodes, Bone Hormonal Therapy 8/20/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)

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