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Topic: New Here...two diagnosis same breast

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Aug 29, 2020 11:43AM

Amyb131 wrote:

Hi! I am new here....After my yearly mammogram showed some architectural distortion, it was recommended I have a biopsy. That came back on 8/17/20 for a grade one Invasive or Infiltrating as my Dr. likes to say with mine....Lobular carcinoma. I met with the surgeon the following day and discussed the pathology, and my treatment options, but he wanted to send me for an MRI first. I was then sent for an MRI on 8/20/20, where two areas lit up....one in my left breast and another area in my right breast. I had biopsies on those two places on 8/25/20. So...on 8/28/20, I was told the left breast was benign, but the new area in the right breast showed a grade 3 DCIS. So, essentially I have two areas in my right breast with two different diagnosis. I will be seeing my surgeon again on 9/1/20. Originally, I was a candidate for a lumpectomy and radiation, but with this new area, I really think I want to go forward with the mastectomy....and strongly leaning towards just having them both taken. I do have a family history, as I lost my sister in 2006. She did not take care of her health and her diagnosis came with a very advanced stage. I did have the genetic testing done, and I do not carry the BRCA genes. I understand that I will not have all of my answers until I meet with my surgeon on Tuesday, but I am wondering how insurances view going ahead and taking the healthy breast too?

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Aug 29, 2020 02:50PM DATNY wrote:

Very similar story here, 4 biopsied spots, some IDC some DCIS. I went double mastectomy with no reconstruction. My insurance paid in full.

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Aug 29, 2020 03:06PM MinusTwo wrote:

I had a BMX also. Insurance paid for everything. If you are in the US, you shouldn't have any problem.

Do go to My Profile and enter your diagnosis & treatment plans so far. If you make that 'public', the other people on BCO can see and respond more easily to your future questions.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Aug 29, 2020 03:07PM Beesie wrote:

I'm sorry for the loss of your sister.

Insurance has to cover both breasts:

Women's Health and Cancer Rights Act The Federal law

https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-health-insurance/health-insurance-laws/womens-health-and-cancer-rights-act.html

"Surgery and reconstruction of the other breast to make the breasts look symmetrical or balanced after mastectomy."


Was your genetic testing only for BRCA genes? There are many other genes that also increase breast cancer risk. These days most genetic testing "breast cancer panels" include as many as 30 different genes. And when did you have the genetic testing done, recently or closer to when your sister was diagnosed? If it was a while ago, then even the BRCA results could use an update, since more and more variants are discovered all the time.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 29, 2020 04:11PM Amyb131 wrote:

Thank you all for your responses! I figured that was the case with the insurance, but I’ve been so overwhelmed with everything running through my mind. I just had my genetic testing done in 2019. I believe it was the 30 panel of test. I never realized other genes could influence breast cancer...I always thought it was the BRCA...thanks for that info. Since I have my mind thinking bilateral mastectomy, I know my next decision will be if and when on reconstruction...so much to think about. Thank you for welcoming me. I am sure these forums will be so helpful

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Aug 31, 2020 06:57PM beach2beach wrote:

HI,

I did a double also. No problem with insurance. My tumor had ild,dcis and lcis in it. It was a busy little tumor. I opted to do a double and hopefully reduce my worry and chances of it recurring or happening on the other side. My sister had been diagnosed with IBC 9 years earlier and I saw all she went through. I know there are no guarantees but that decision for me works in my mind. Do what's right for you.

My genetic testing was a 64 panel test if I remember correctly..no mutations.

Good luck and 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 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 31, 2020 08:20PM Dani444 wrote:

I am so sorry for your diagnosis, and I am sorry that you lost your sister. I had a dx of lobular cancer in 2018 and had a mastectomy on my right side. I had to have a biopsy after getting my first mammo post cancer on my good side. I decided I could not handle the anxiety of every 6 month testing so opted for a mastectomy on the other side. I am currently recovering now, as my first surgery was delayed due to covid. No problem with insurance. Best wishes to you.

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 Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 31, 2020 10:58PM OnTarget wrote:

I had it in both breasts, and after BMX it was determined that I had ILC, DCIS, LCIS, and ALH. Lots of stuff in there.

I'm sorry you are going through this! I'm a bit over a year out and I feel great, so there is light at the end of the tunnel!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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