Join Us

We are 218,761 members in 84 forums discussing 161,211 topics.

Help with Abbreviations

Topic: Family history, will insurance cover?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Apr 18, 2019 05:47AM

alto wrote:

I have a friend with a family history of breast cancer. She believes her insurance will not cover the cost of a mastectomy and reconstruction. I am asking these questions on her behalf:

Are there any standard guidelines insurance companies use to determine what is optional vs. necessary surgery in this situation? If family history or genetic testing show a certain result, do they have to cover surgery?

If she has concerns about genetic testing impacting her negatively by becoming part of her health record, is there a way to prove, by the number of relatives she has who have died from the disease, that she qualifies for preventative surgery?

Who should she consult to figure out what her options are? Should her doctor know? Should she contact a hospital cancer center and speak with them or their finance office, or even the American Cancer Society?

If her insurance ends up denying her, does she have other options so she's not paying out-of-pocket for surgery and reconstruction?

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/10/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/15/2019 Mastectomy: Right
Log in to post a reply

Page 1 of 1 (9 results)

Posts 1 - 9 (9 total)

Log in to post a reply

Apr 18, 2019 08:00AM gb2115 wrote:

I would probably start with her calling her insurance company to discuss.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
Log in to post a reply

Apr 18, 2019 10:44AM edwards750 wrote:

My mother had breast cancer. My sister and I both have it as well. Family history had nothing to do with whether either of our insurance companiespaid or not. It never entered into the discussion. I have BC/BS. My sister had Medicare as her primary and a supplemental policy.

I’m sorry your friend got the dreaded DX but there are reasons to be optimistic about treatments, etc.

Good luck to your friend. She’s blessed to have a friend like you.

Diane

Log in to post a reply

Apr 18, 2019 10:52AM MelissaDallas wrote:

It varies by company. As an example, here is Aetna's guidelines:

http://www.aetna.com/cpb/medical/data/200_299/0227.html


LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
Log in to post a reply

Apr 18, 2019 03:55PM vlnrph wrote:

Your friend could ask her doctor for a referral to a genetic counselor. These master degreed professionals are in the best position to analyze family history, suggest who should be tested and help interpret results.

Anyone thinking about looking for a possible inherited mutation needs to review their life, disability and long term care insurance policies before sending in a sample. We have protection from discrimination in health coverage but not those other areas. There was federal legislation known as GINA passed several years ago.

Denials can be appealed. I won on a few different issues when the company was not following their own guidelines and also because they did not honor the prior authorizations they had given!

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
Log in to post a reply

Apr 19, 2019 02:58PM - edited Apr 19, 2019 03:05PM by alto

Thank you for the great responses. Since she has the strong family history but no diagnosis, we were having trouble figuring out who was the right person to go to to make a case for the surgery (oncologist, surgeon, genetic counselor), and what +/- each route might involve. I appreciate the support, leads and cautions.

It does seem to me the insurance company is not following their own guidelines (found policy info online that said multiple blood relatives with bc in direct blood line was enough) but I've also heard this insurance company skimps on coverage, so I wasn't sure how to advise her to move forward to get the prophylactic surgery she wants

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/10/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/15/2019 Mastectomy: Right
Log in to post a reply

Jul 30, 2020 03:29PM alto wrote:

I wanted to say thank you for all the advice. I'm posting this a bit late - but my friend finally got her surgery.

Her insurance had initially told her it was an elective surgery and they would not pay. Her family history was not enough. She ended up having to get a genetic test to prove she needed the surgery (she was reluctant to do this because of the impact on life insurance, etc.), but after that her surgery was approved and she was able to go forward with it and is doing very well, and I know it was a big relief to her to reduce her risk.

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/10/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/15/2019 Mastectomy: Right
Log in to post a reply

Sep 22, 2020 11:34AM - edited Sep 22, 2020 11:39AM by alto

She had to get the genetic testing. They wouldn't do anything without that, despite the fact she had several female relatives in her bloodline that had died of breast cancer. I assume if the test hadn't come back positive for the genetic link, they wouldn't have paid for the surgery. She'd been trying to get the surgery for about a year, but they wouldn't do it without positive results on the genetic test. Waiting for those results was tough - getting the testing felt like a gamble. In her case, even though she got some bad news (positive genetic link), she got the results that got her the surgery she wanted.

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/10/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/15/2019 Mastectomy: Right
Log in to post a reply

Sep 22, 2020 02:17PM AliceBastable wrote:

Just because there are relatives with cancer, doesn't mean it'ss genetic. It's actually a pretty small percentage, if I remember correctly. But it's good to get tested IF there's a chance.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 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
Log in to post a reply

Sep 22, 2020 02:37PM exbrnxgrl wrote:

I agree with AliceBastable. With the currently known genetic mutations that may predispose one to bc, and we’re way beyond BRCA genes now, I believe only about 15-20% of dx’ed bc is genetically tied. That doesn’t mean there aren’t other genes that have yet to be identified. I have a paternal grandmother who diedof bc and a sister who died of a uterine sarcoma. We are also of Ashkenazi descent which puts us at higher likelihood for the BRCA genes. I have had all the tests currently available. The results? Bubkes as we say in Yiddish, nothing.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)

Page 1 of 1 (9 results)