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Topic: CHEK2 Diagnosis & Insurance Denial

Forum: Positive Genetic Test Results —

BRCA 1 & 2, ATM, BARD1, CDH1, CHEK2, MRE11A, NBN, p53, PALB2, PTEN, RAD50, RECQL, and RINT1 genes

Posted on: Mar 6, 2019 05:13PM

CourtneyO wrote:

Hello,

I am hoping someone can shed some light on this for me. I had some genetic testing done and carry the chek2 mutation. In addition, I lost my mother to breast cancer 15 years ago. I saw a breast surgeon and decided to go the route of a prophylactic bilateral mastectomy. My surgery was supposed to be in three weeks but my insurance company is denying coverage saying there isn't enough literature that a CHek2 has an increased risk factor association for breast cancer. Can anyone help with this? I am distraught at this, having thought that my anxiety was finally going to be taken care of with all of my drs appts and such. I have very dense breast tissue and some fibroids that were detected via MRI, but came back as "most likely benign but come back in six months". I am planning to file an appeal with my insurance company but don't even know where to start:(


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Mar 6, 2019 05:31PM - edited Mar 6, 2019 05:32PM by Moderators

Hi Courtney,

We just wanted to reach out to welcome you to Breastcancer.org. We're so sorry to hear of your positive genetic test results, but we know others here will have some great advice for you! We hope you get some answers soon!

You may also want to look through or post in the Employment, Insurance, and Other Financial Issues forum for some information!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 6, 2019 06:43PM Fritzmylove wrote:

Have your surgeon’s office also appeal it. I’m sorry you’re having to go through this. Insurance companies suck. From a fellow chek2 sister, I hope they approve your surgery

CHEK2+ Dx 9/19/2018, IDC, Right, 6cm+, Stage IIIA, Grade 2, ER+/PR+, HER2- Chemotherapy 9/30/2018 TAC Surgery 2/20/2019 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 3/4/2019 Femara (letrozole), Zoladex (goserelin) Radiation Therapy 4/22/2019 Whole-breast: Lymph nodes, Chest wall
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Mar 6, 2019 07:10PM CourtneyO wrote:

Did you have prophylactic surgery? If you have any advice, I am happy to take it! I will also have my surgeon appeal it. Funny Ive seen the breast surgeon three times, plastic surgeon twice and had an MRI and it has all been covered. Feeling a bit deflated. :(

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Mar 6, 2019 07:38PM Fritzmylove wrote:

Unfortunately, no. My BMX was not prophylactic. I was diagnosed in September At age 34. My dad never mentioned that his mom had breast and pancreatic cancer so I didn’t know we had a family history until I found out I had BC. After my diagnosis, I went through genetic testing which found the CHEK2 mutation. Then my dad was found to have it as well, but has never had cancer, and he’s 80. Luckily my 2 sisters don’t have it, and my brother is going for testing soon.

CHEK2+ Dx 9/19/2018, IDC, Right, 6cm+, Stage IIIA, Grade 2, ER+/PR+, HER2- Chemotherapy 9/30/2018 TAC Surgery 2/20/2019 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 3/4/2019 Femara (letrozole), Zoladex (goserelin) Radiation Therapy 4/22/2019 Whole-breast: Lymph nodes, Chest wall
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Mar 6, 2019 08:28PM farmerlucy wrote:

I’d ask your BS for a referral to a genetic counselor. They can put a number on your risk. I have no known mutations, but my GC felt my lifetime risk was 50%. That was enough to get it covered.

Also when I was researching a PBM, I came across the approval guidelines for said procedure from BCBS.

My BS was not eager to do the surgery, but I politely pestered his office every Tuesday morning like clockwork to get the request into the insurance company.

My BS also mentioned that in the long run a PBM might be more cost effective for the insurance company than high risk screening. (Except I understand that DIEP recon is very expensive.)

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Mar 6, 2019 08:29PM farmerlucy wrote:

I'd ask your BS for a referral to a genetic counselor. They can put a number on your risk. I have no known mutations, but my GC felt my lifetime risk was 50%. That was enough to get it covered.

Also when I was researching a PBM, I came across the approval guidelines for said procedure from BCBS.

My BS was not eager to do the surgery, but I politely pestered his office every Tuesday morning like clockwork to get the request into the insurance company.

My BS also mentioned that in the long run a PBM might be more cost effective for the insurance company than high risk screening. (Except I understand that DIEP recon is very expensive.)

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Mar 6, 2019 11:13PM ShetlandPony wrote:

Courtney, I would see a cancer genetics specialist. They ought to know the latest research that might support your surgery plans. If the genetics specialist agrees that mastectomy is reasonable with this mutation and files an appeal, I think that might carry more weight than an appeal from the surgeon. It’s not clear from your post whether you had a pelvic MRI and/or breast MRI. You could discuss the option (maybe you have already) of adding a yearly breast MRI to your screening, as this would be much more able to show anything concerning in dense breasts, compared to mammography, and this might be reassuring. I am so sorry for the loss of your mother.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Mar 7, 2019 07:18AM CourtneyO wrote:

I saw a genetic counselor and she put the risk at37-44 without family history. My mother died of breast cancer 16 years ago and so adding that increases the risks as well Is a cancer genetic specialist different than a genetic counselor?


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Mar 7, 2019 07:21AM CourtneyO wrote:

Thanks for your reply!

I had a breast mri with and without contrast. I’m already doing every six months for alternating mammograms and breast mris which I appreciate the extra screening on but having to be called back because of irregularities causes so much anxiety. I can’t imagine the cost of the mris either!! so you think an appeal from a counselor will carry more weight? Or is a genetic specialist different from a counselor?

Thanks so much! Hoping to set the insurance company straight

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Mar 7, 2019 04:34PM farmerlucy wrote:

I would guess a genetic specialist and a genetic counselor are the same.

I’m not sure which company did your testing, but if you felt up to it you could do another self pay test at Color.com

https://www.color.com/t/welcome?utm_source=Google&utm_medium=cpc&utm_campaign=750180910&kw=color%20genomics&pos=1t1&mt=e&device=t&gclid=EAIaIQobChMIzZOEtNi34AIVFr3sCh2sjwVpEAAYASAAEgKxxvD_BwE

You get to speak their genetic counselor when you get your results. It’s $199. They may have additional info on your mutation??

I spoke to their genetic counselor and they were very helping in providing info re: genetic counselors in the city where my daughter lived.

Best of luck. High risk screening is very onerous.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Mar 7, 2019 07:38PM ShetlandPony wrote:

At my cancer center, there is a physician who is a specialist in cancer genetics, and working with him are some genetic counselors who have, I think, masters degrees. And they probably have someone in their section who knows just how to deal with insurance, but the doctor’s name his evaluation would be part of the appeal.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD

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