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Topic: Genetic testing for BRCA over 65 and not covered

Forum: Genetic Testing —

ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, and mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM)

Posted on: Aug 14, 2020 08:11AM

flashlight wrote:

After my sister was diagnosed with BC this year my daughter's Gyn said I should be tested. My sister has 3-daughters and I have 2. Medicare does not cover BRCA testing and the Myriad testing that is often recommended. This is what my MO has said to consider, but it is around $4000.00. Has anyone used Color genetic test? It is $259.00 for the BRCA1 and 2 genetic testing. I see my MO in Sept and will need to get an order for the Color test.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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Aug 14, 2020 09:24AM MelissaDallas wrote:

Yes, lots of us here have done the Color Genomics full panel, often after having hadearlier “piecemeal” testing for just a few genes when more information on lots more genes became available later. They are very reputable.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 14, 2020 11:40AM GlobalGal wrote:

I am over 65 and did the Color Genomics test as my HMO did not cover genetic testing.

With TWO, simultaneous cancers (breast cancer and papillary thyroid cancer),I felt my young adult children should know if there was anything inherited.

According to Color Genomics , I have no inherited gene mutations or hereditary cancer; just the sporadic kind.

Genetic counseling with was part of the process, which I thought was very helpful.

I did the hereditary heart test too with no hereditary issues identified.

I also included the Medication Response Test, which analyzes 14 genes that can affect medication response:

I am an ultrarapid metabolizer of caffeine {I can drink coffee all day without feeling jittery and at night and still fall asleep).

On the other hand, I have a poor tolerance for the blood thinner Warfarin. As a slow metabolizer, an average dose is dangerous for me and can lead to abnormal, life threatening bleeding (I need 65% of the average standard amount).



De novo stage IV metastatic breast cancer with metastases to 3 central lymph nodes in neck following complete thyroidectomy for papillary thyroid cancer WITH NO PRIMARY BREAST CANCER IDENTIFIED and NO OTHER METS (so far) Dx 3/20/2019, Stage IV, metastasized to other, ER+/PR+ Hormonal Therapy 6/4/2019
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Aug 14, 2020 11:45AM AliceBastable wrote:

My medicare advantage plan covered genetic testing, just not the super in-depth one. My BS was the ordering physician, and I had a long session with a genetic counselor and she sent my spit tube in to whatever lab it was - I'd have to dig out the paperwork to see which one and the personal files need tidying before I can do that.


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 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Aug 14, 2020 12:55PM - edited Aug 15, 2020 01:49PM by ShetlandPony

One thing you'll want to find out is how many BRCA variants and other cancer gene variants does the Color test cover vs. the standard test. A test that only looks for some variants may miss a person's variant and give a false negative.

Did your sister have genetic testing? If she did and it was positive, you can test just for the same genetic mutation, which is less expensive. Do the daughters have insurance that will cover full panel testing? With a mother and aunt having breast cancer, they would get approved for testing according to the latest guidelines. If some of them (God forbid) come up positive, you have a pretty good clue about yourself. Finally, a cancer genetics specialist (not just an oncologist or surgeon) is the best person to help you choose what testing to do, and has a better chance of justifying testing and therefore getting insurance approval. Ask for a referral. The NCCN guidelines recommend that a genetic counselor be involved before testing.

Edited to add: Upon reviewing the NCCN guidelines in detail, it appears the daughters may not qualify for testing based on their mother’s and aunt’s diagnoses, If they were both over age 65 at diagnosis. See my post further down. Bottom line, it is complicated and you need a cancer genetics specialist to look at the whole picture to advise on testing.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Aug 14, 2020 01:05PM ShetlandPony wrote:

https://www.breastcancer.org/research-news/brca-mutations-more-common-in-older-dx-women

See this BCO article about expanded genetic testing and the new (February 2020) guidelines, and make sure your doctor is up to date.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Aug 14, 2020 04:17PM farmerlucy wrote:

Your doctor does not have to order Color. You can just go to the website and get it. It is self pay of course but a bargain. I have a lengthy family history of early onset, so to me the genetic counseling session alone, was worth the money. My DD was in Denver at the time and they even recommended high risk screening facilities for her there.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/20/2012 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 3/10/2012 Lymph node removal: Sentinel Surgery 7/21/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/13/2015 Prophylactic ovary removal
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Aug 15, 2020 07:31AM flashlight wrote:

Thank you to all that responded. My daughter's GYN also has BC. My MO hasn't been very helpful with this. From what I understand only one of us has to be tested and if it comes back positive insurance will pay for everyone to be tested. If it comes back negative then my sister and adult children do not have to be tested. Medication Response Test sounds interesting too.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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Aug 15, 2020 07:55AM MelissaDallas wrote:

Incorrect about your sister. Both you and your sister would have had a 50% chance of inheriting. Because you are negative does not mean your sister is

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 15, 2020 09:00AM Mavericksmom wrote:

Flashlight, would it change your treatment? I just had genetic testing done via Invitae and they only charged me $250. I had done Myriad many years ago and this was for additional tests.

Your MO is wrong about testing only one. Just because I was negative, doesn't mean my sisters are. That said, it does lend some indication of what your results are likely to be. My MO still suggested that my sister might want to have it don. MY sister declined and I agree, in our situation it doesn't seem to offer any more information regardless. It won't change how our daughters are checked by their doctors or our treatments.

That said, I wish I had not done further testing. My mother and two of my three sisters and I were diagnosed with breast cancer as well as a cousin on my mom's side. The counseling was very helpful and although I went ahead with the testing, maybe just going to see a genetic counselor would be of help. The counselor actually thought if I had any genetic issue it would have come from my father's side not my mother's.

The paperwork I filled out was grueling. It took me hours to complete, but I did it a little at a time. The questions were all important, but some were difficult to find answers for.

Things that surprised me were the death dates of aunts/uncles/grandparents, etc. Why? Because I came from large families and most all, for many generations, lived well into their 80's/90's, so even if I was unsure of how they died, they lived longer than the average for their time period. I only knew of two conditions that caused two of my uncles to die early, one of polio and one of another disease.

While breast cancer was prevalent in my immediate family, (siblings and mother), cancer didn't seem to occur in my extended family.

While doctors advocate genetic testing, and rightfully so, the reason I wish I didn't have it done is due to the fact that I already knew I was BRCA negative. Also, some of my nieces are now in their 40's and 50's and none had breast cancer so far. I was the youngest in my family so my children are in their 30's.

I am certain the cost of testing would not be more than $250. I know that is a lot too, but less than your price of $400.

Just like all things breast cancer, we have to apply what we know to our particular case. Genetic testing is not a one size fits all either. If you are considering it, I would start with genetic counseling. There is no pressure there and I am on a Medicare Advantage plan and had no co-pay for it. It is at least worth finding out. I had the counseling in 2003 and honestly didn't think doing it again would be helpful and I was wrong! My counselor gave me so much to think about that I would never have considered otherwise. Remember, you don't have to do this now, you can wait until the Covid issues are lessened. I canceled two times over a year and a half before I finally did the counseling.

Good luck. Let us know what you decide!


Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Aug 15, 2020 11:32AM Beesie wrote:

There is a lot more to breast cancer genetic testing than BRCA. Personally I think it's important for anyone with either a lot of breast cancer in their family, or a variety of cancers in their family, to talk to a genetic counselor and consider being be tested, not just for themselves but to provide information for the next generation.

BRCA mutations confer the highest risk of breast cancer and ovarian cancer, and for men, a significant risk of prostate cancer (particularly BRCA2). The other genes that we are tested for in a breast cancer panel may present a lower risk of breast cancer, but most are associated with other cancers as well. PTEN/Cowden's Syndrome, for example, may present as high a breast cancer risk as BRCA, but also presents a very high risk of thyroid, kidney and endometrial cancer, and a significant risk of colon cancer. A MSH6 genetic mutation, which doubles a woman's risk of breast cancer (and therefore is not nearly as significant a risk factor as BRCA or PTEN), is most associated with Lynch Syndrome, which presents a very high risk of colon cancer. Having knowledge that this is in the family allows other family members to be tested, and if positive, to be put into high risk screening programs. That can save lives.

It's important however to keep in mind that genetic testing is still in it's infancy. Back when I was diagnosed, the only genes women with breast cancer were tested for were BRCA1 and BRCA2. I had a redo of testing about 5 years ago, and had a 20 gene panel. The breast cancer panels now include 30+ genes. So more genes are being discovered all the time, and more mutations of known genes are being discovered all the time. My first BRCA testing was done 15 years ago. When I was retested 5 years ago, the BRCA genes were again included and the result could have been different because so many more variants had been discovered in the years since my first test. So a negative genetic test result in a family where there are a lot of related cancers doesn't mean that there is no inherited genetic mutation in the family. It only means that if there is an inherited genetic mutation, it hasn't been discovered yet (or wasn't included in this particular test that was done).

Having said that, reading posts on this site, I think genetic testing is sometimes done when there is nothing to suggest the presence of any genetic cancers in the family, with few if any family members ever diagnosed with cancer until the one case of breast cancer popped up. In those cases, searching for a pin the haystack - when there most likely is no pin there - probably isn't necessary.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 15, 2020 01:37PM flashlight wrote:

Hi Mavericksmom, No I wasn't considering the testing for myself, but rather the adult children in my family. You bring up some interesting points to consider. I think my MO did contact the hospital genetic counselor, but they never reached out to me. I've sent a follow up email and didn't hear back. I have found with Medicare that is often the case even with the supplemental if insurance doesn't pay. I will try again to find out more information.

MelissaDallas I will question my doctor again about this. That does make sense.

Beesie, True. As with most families today we have had various cancers in the family. If the testing could provide proactive monitoring for my children then it would be worth it. Already my daughters have had a baseline mammogram because of my diagnosis.






Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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Aug 15, 2020 01:45PM - edited Aug 15, 2020 01:49PM by ShetlandPony

I must apologize for saying above that the bc diagnoses of flashlight and her sister would qualify the daughters for testing. As I read the actual NCCN guidelines carefully, it appears that one of these daughters would only qualify if she herself had a breast cancer diagnosis, if the mother and aunt were over age 65 at diagnosis. But there may be other relevant information that flashlight has not mentioned. Do not take the word of anyone but a cancer genetics specialist when deciding whether testing is warranted. The guidelines are complex, taking into account the ages of diagnoses, male vs. female, the closeness of the blood relationship, whether there are any breast, ovarian, pancreatic, or prostate cancer cases and their type, ancestry, and whether the family history is unknown or limited. The professionals have done their studies and calculations just so people do not go hunting for that pin (or needle) in a haystack that Beesie mentions.

That said, there is a definite trend toward more testing, not less, as we learn more and as testing becomes less expensive. Studies have shown that there are many patients with a genetic mutation implicated in their breast cancer who would not have qualified for testing under older guidelines. Guidelines change.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Aug 15, 2020 02:02PM Mavericksmom wrote:

One more thing for your daughters to consider. While genetic testing should not interfere with medical insurance, it can impact the ability to get a policy and/or premium costs, for life insurance. My counselor explained all that to me as well as all the above mentioned medical information. Again, that is why going to a genetic counselor is an important first step. You are not committed to doing the actual testing when you go to counseling. That choice is up to the individual, the counselor, as ShetlandPony stated, give all the information to make an informed decision.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Aug 15, 2020 09:10PM BlueGirlRedState wrote:

Does insurance cover genetic testing ? DO the results affect insurance. The Affordable Health Care Act forbids the use of preexisting conditions, I thought. Genetic testing should be, even it is not , be covered by insurance since it could affect a treatment plan and is important information for daughters and female relatives. I was surprised when my private insurance denied the claim for a BC gene profile of over 20 markers, $1200. But the lab might pick up all but $100. So it might be worth checking with various labs. Time to update Medicare and what it covers. Medicare does not cover lymphedema either, and there is a website with that information, and which legislators support/don't support. Soundsl like gene testing needs a similar website. There are a couple of advocacy threads on this site, maybe see if anyone posting there has ideas. https://community.breastcancer.org/forum/113/topics/856981?page=23#post_5574422 https://community.breastcancer.org/forum/110/topics/875580?page=4#post_5576419

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Aug 15, 2020 11:29PM LillyIsHere wrote:

I paid out of my pocket for genetic testing and it was $250 for 84 genes. The hospital I went to recommended it and because I don't have any family history of BC, my insurance did not cover it.

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Aug 15, 2020 11:57PM wrenn wrote:

Since I was diagnosed at 66 genetic testing wasn't covered for my sisters or daughter. I was told that if it was genetic one of us would have had it earlier. I got 23and me and then color and I am negative for all that they test for. I also gave access to my 23andme to Promethease because they did more extensive testing and I am apparently at low risk for getting breast cancer so who knows. It is a worry if you have daughters but I'm not really too worried about mine.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Aug 16, 2020 01:29AM redhead403 wrote:

I was tested by Myriad. I was told if my insurance didn't cover it, Myriad would help and charge you a much reduced price. I would check it out

Surgery 4/16/2019 Lumpectomy: Left Dx 9/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 11/7/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 1/6/2020 Whole-breast: Breast

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