My Mind the Enemy – A Family History of Cancer
I remember being teenager and happily thinking that no one in my family had gotten cancer. I can remember going over each one of my aunts, uncles, and grandmas faces in my mind and confidently thinking “no cancer”. I may have to worry about tornados, sharks, and roller coasters getting stuck upside down but not cancer.
Little did I know what time would bring.
Early this morning, I found myself googling “Insurance Coverage BRCA Genetic Testing”. If you are unfamiliar with “BRCA”, it’s the breast cancer gene. Fun times.
Two weeks ago, my aunt became a breast cancer survivor overnight. She underwent a prophylactic bilateral mastectomy because of our family history and having found two lumps that could or could not be cancer. Turns out the lumps were cancer. She was not the first one.
My grandma had breast cancer.
My other aunt had breast cancer.
I just found out my great grandma died of ovarian cancer in her 40s.
To add to the list, I spent time on the Force, Facing Our Risks of Cancer Empowered, website and saw that having relatives with melanoma and prostate cancer also increases the risk of developing hereditary breast and ovarian cancer. I have had first and second degree relatives on the same side of the family with both of these cancers as well.
This means all my first and second degree female relatives on one side of the family have had breast cancer with the addition of melanoma and prostate cancer in one male relative. Not to be a doomsdayer but my odds of avoiding cancer don’t really seem all that good anymore.
Sometimes it’s hard to sleep.
My mind the enemy.
I’m considering being genetically tested for the BRCA II and BRCA II genes. Women who carry these genes have a genetically higher chance (up to 80% chance) of being diagnosed with breast cancer.
Unfortunately, it doesn’t look like a test would be covered by my insurance. Paying $2000-$5000 out-of-pocket is steep when there is a good chance of getting a “false negative”. It’s a little complicated but I’ll try to explain. Unless it is “positive”, the test wouldn’t be helpful because my mom, aunt, or grandma haven’t been tested. In other words, a negative is only a true negative when the gene has been identified in another family member.
My mom’s insurance turned her request for a genetic test down because she was over 50 by five years. Never mind that this was her second round with cancer. My aunt is also over 50 by two years and her insurance wouldn’t cover a genetic test.
I found my insurance company’s policy.
Genetic testing for a BRCA1 or BRCA2 mutation, associated with genetic counseling, is considered medically necessary when ANY of the following criteria are met:
- Individuals with breast cancer who have 1 relative with breast cancer diagnosed at an early age (less than 45 years) ; OR
- Individuals with breast cancer diagnosed at an early age (premenopausal); OR
- Individuals with breast cancer with multiple primary cancers or bilateral disease; OR
- Individuals who developed epithelial ovarian/ fallopian tube/ primary peritoneal cancer; OR
- Men who developed breast cancer at any age; OR
- Individuals with a personal history of breast cancer, and diagnosed age less than 60 years with a triple negative breast cancer; OR
- Individuals with a personal history of breast cancer, and diagnosed age less than 50 years with a limited family history; OR
- Individuals with a history of breast and/or ovarian cancer at any age with two or more close blood relatives with pancreatic cancer at any age; OR
- Individuals with a history of pancreatic adenocarcinoma at any age with two or more close blood relatives with breast and/or ovarian and/or pancreatic cancer at any age; OR
- Individuals who have 1 or more first or second-degree relatives who meet ANY of the above criteria; when that relative(s) is (are) not available for testing; OR
- Individuals with breast cancer who have 2 or more first, second or third-degree relatives (related through a single lineage) with breast or epithelial ovarian/ fallopian tube/ primary peritoneal cancer; OR
- Relatives of individuals with documented mutations in either the BRCA1 or BRCA2 gene; OR
- Individuals with a family history of 3 or more first, second or third-degree relatives with breast or epithelial ovarian/ fallopian tube/ primary peritoneal cancer, at least 1 of which has breast cancer that develops at or before age 50 years; OR
- Individuals with breast cancer who belong to a population at risk for specific mutations due to ethnic background (e.g., Ashkenazi Jewish, Icelandic, Swedish, Hungarian or Dutch descent).
In a nutshell, since my family members haven’t been tested themselves and are older than 50 by two years, I don’t qualify for genetic testing.
Are the women in my family getting breast cancer by chance or is it genetic? If my family does carry a BRCA gene then it appears we have to wait until cancer makes its ugly appearance in someone under the age of 50 before insurance will cover a test. Seeing that the age of occurrence keeps going down, I can’t help but worry if I will be that person.
My mind the enemy.
Maybe a genetic test isn’t the answer. Even if I would get the genetic test it’s not a guarantee. I could test negative and still get cancer or I could test positive and not get cancer.
Not wanting to live a life of worry, I’m looking into having a prophylactic bilateral mastectomy. It may sound extreme and, to be honest, it is extreme. Removing body parts isn’t most people’s idea of a walk in the park but neither is cancer. I really don’t think I want to live my life wondering if I’m next in line and getting constant mammograms. Mammograms that might or might not catch cancer as was the case with my aunt and my grandma.
I know, I sound crazy and, perhaps, I am but I’m not clueless. I’ve spent hours researching my options, reading message boards, and one fact remains: all but one of my 1st and 2nd degree relatives have had breast cancer.
In the meantime, I continue to do what I can: eat well, exercise regularly, and pray to quiet my mind the enemy.
Does anyone have any resources or knowledge on this topic? Would you want to to be genetically tested if you were me? Why or why not?
(Oh and sorry about the downer post. I had to get it off my chest. No pun intended.)
Hugs and High Fives,
Jenn
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This is my (almost) sane quest for insane health. Let's 
Sending you a BIG hug!!!
I have a lot of cancers in my family but not breast cancer, so I’m not much help there. But I do know the feeling when your mind can’t be quieted – worry about others, worry about yourself… Breathe, consider your options carefully – you’ll figure out what’s right for you.
Thank you Andrea. I’m sorry to hear that you have a family history of cancer as well. ((((HUG)))) right back atcha.
Jenn- if you want to talk to someone who just went thru treatment, double mastectomy and now reconstructive surgery all within the last 14 months search for my cousin Jennifer Rand on my Facebook, she’d be an excellent source and loves to talk tell her how you found her! 😉 Good luck. Pray against those enemy thoughts, they are not from the Lord.
Thank you Carrie. I appreciate the reference and the support. ((hugs))
Hi there, I’ve never commented, in fact I really only read blogs and never comment… But I just wanted to reach out to you. I am going through the EXACT same thing right now. Funny, right before going into my reader I was googling things like “preventative breast cancer foods” etc…. I’m trying to research everything I can at the moment.
I was just like you and never thought I’d have to worry about this stuff. Then, it hit like a ton of bricks. I guess I alwYs kind of put the fact that one grandmother died of breast cancer at age 32.. My other grandmother died late in life, but suffered from breast cancer as well… Then my aunt got it (she is a survivor) and less than a month ago my mother was diagnosed. Not to mention, my brother died at age 34 of lung cancer.
A month ago my whole world turned upside down, it’s been many sleepless nights worrying, thinking about what is to come with my mother, thinking about what might possibly come for my future as well. My mothers doctor actually insisted my mother get the BRCA test. Her and my aunt have the same doctor so my aunt had the test as well.. Hers was negative, my mothers results have yet to come in. I have been entertaining the idea of getting it as well, but like you, insurance for me may become an issue.
I’m not to the point where I’m considering or looking into any preventative surgery, but it’s definitely something to think about.
Anyway, I just want you to know you’re not alone, I feel like I could have written your post. I know those sleepless nights, the tears that go along with them, the stress, anxiety, fear, feeling lost… It’s horrible.
I wish you and your family all the best, I’ll be thinking of you and if I come across any good information about the testing, etc, I’ll be sure to inform you!
Hi Sarah. First off I’m so sorry to hear about your brother and grandma. They were so young…what a tragedy. My heart also goes out to you and your mom. I hope it was caught early. Thank you for taking the time to comment it’s good to feel less alone. I so understand wanting to know the “preventative breast cancer foods”. It’s hard. The other day while out and about I wanted a pecan praline so bad and then I thought about cancer. I almost started crying there in the store when I decided to walk out without one because of my fears. It was completely irrational but it’s where I am at right now. While I haven’t commented yet, I’ve found this forum very helpful. http://www.facingourrisk.org/messageboard/ Please do let me know if you come across anything and if you ever want to feel free to email me at jenn (at) girl-heroes (dot) com
Oh Jenn, I am so sorry that you are dealing with this! It is NOT a downer post – it is truly something to be concerned about. I cannot believe that the insurance will not pay with SO many close family members with breast cancer – that is a travesty.
You may remember, I find cancer for a living, and I think you are well within reason to consider the bilateral mastectomy. Good grief, I am fairly sure you would test positive for the gene – but even if you did not, with that strong of a history – I would want to lessen my risk as much as possible, even if it meant a mastectomy. I neither think it is extreme or crazy. With what I see daily – I think it is probably a very good option to talk and pray about. I don’t want to scare you but that family history is definitely not good. You eat so healthy and exercise and I am sure that is helping you alot. If it were me, I would probably call the insurance company and tell them your history and they may let you go ahead. But like you said, it can have false negatives/positives. I just base my thoughts on the history (which sounds genetic). I would personally consider the surgery (but that is just me and my opinion 😉 )
I will be praying for you – I don’t want you to stress and worry but it is good you are concerned and being proactive.
Hugs!
Thank you Missy. I do remember you find cancer for a living and I hoped to get your opinion.
It feels good to have my concerns validated. I feel in some ways I would be crazier to continue living in worry knowing my risks are so high. I’m not sure my insurance would cover a mastectomy either although my aunt and I have the same insurance and it covered hers even without being diagnosed with cancer. They just happened to find the cancer after the mastectomy. I’m confident I can wait until we get back to Ventura before seeing a doctor since my mom and and aunt were both in their early 50s but as soon as we get back I’m going to make an appointment. ((HUGS))
I’m not sure where you are getting your irafnmotion, but if you do test positive for the gene it is illegal for any insurance company to use this as a preexisting condition, to deny coverage or to base the cost of coverage under HIPAA. They also do not have the right to decide if you have a bilateral mastectomy or not. That decision is up to the patient period.The doctors I work with recommend the person already diagnosed with Breast cancer get the test first, because if they do not have the gene there is no reason for anyone else to be tested. If you are still concerned and you are paying for the test yourself I suggest you have it done under an alias so there is no way the results can be tracked back to you. This is common practice when working with famous and/or celebrity patients and your doctor should have no problem with it. If you do choose this route however, be very careful about keeping you paperwork as you may have a difficult time should you need copies later.EDIT: Okay, well I have received mine from a physician who spoke at a cancer meeting at UCLA. So after seeing your response I did a little searching and found it is not as clear cut as I thought, partially because it has also not been tested in the courts. There is also another point not brought up here regarding employers. I posted a link to one of the most current documents on found on the Department of Health and Human Services website so that you can read it over. Apparently this problem has been discussed for 8-10 years now and I read doing this search that Bush was supposed to sign a bill regarding this, but it did not list the bill number and did not read confirmation that it was signed. Hope this helps a little.I would go the alias route.
Everyone has died of cancer (some multiple kinds before finally succumbing) except for my paternal grandmother, who had a massive heart attack at age 52 and my maternal grandmother who had a blood clot go to her lung.
When I say “everyone,” let’s look at some numbers: my father is the youngest of 9. I have 61 cousins; my father was a change of life baby and so was his mother and I was the last born. My “cool/ YOUNG” cousin is in his 60s and I’m 40. On my mother’s side, she was the 3rd from last of 19.
Nineteen.
“Everyone” takes on a new meaning.
I do think about it. My brother was diagnosed with brain tumors and chose to stop the testing. He has 3 small children. My parents (and I) have had cancerous skin lesions removed–not pre-cancer.
It doesn’t keep me up at night. I don’t believe I’ll die of cancer–perhaps I’m in denial. I believe I’ll die of pneumonia or an other infection (I have congenital lupus and asthma, amongst other things like I wore braces on my legs as a kid, wore glasses since age 2…I’m just not the spriteliest).
I had a colon cancer scare in my 20s. My gastro-enterologist and proctologist (have spastic colon, too) saw a series of masses and scheduled more tests. It turned out negative (thank goodness) but I spent 3 weeks believing that my time was up.
During that time, I was totally nuts. Totally. Panicking. “What promises have I made myself and others that need to be kept before I get too sick?”
When I got the “all clear,” I went around doing those things. One was running in a competitive race. It was only a 5k but I’d never been a runner. Another was going to Ireland where my grandmother came from (I’m 2nd generation American). Things like that. I also started going to a shrink
That wasn’t because of the scare but because I’d always held *everybody* would do well to get some “help.” And I knew my life story and it earned some help.
I’m laying this all out only to say you’re not alone. You’re making a marvelous trip right now with your family. Enjoy every.day. Living a healthy lifestyle HELPS; keep doing it. Also, doing everything right does not guarantee what tomorrow brings.
You’re going far beyond what I’ve done to educate myself, perhaps I should be ashamed of that but my theory is to focus on the positive as much as I can. I’ll deal with whatever when it happens because it’s all too easy for me to fret (remember that counseling I get?) and obsess about *everything.* For some reason, this one doesn’t freak me out (of course “the scare” was something I wouldn’t wish on anybody).
Being healthy, checking yourself and getting yearly exams are great tools. TALKING about your fears and pain is a great tool. You’re doing everything right. Remember to breathe.
Thank you for your encouragement and for reminding me I’m not alone. So glad you’re cancer scare turned out to be just a scare and that it sounds like you turned it around for good. (I went to a shrink for years and loved it.:-) I’m really sorry to hear about your family’s struggle with cancer but it sounds like you have an amazing attitude towards it. Love this statement, “Also, doing everything right does not guarantee what tomorrow brings.” My first thought was, “I know and I hate that” but then I thought about it and realized it holds an amazing potential for freedom. Thank you.
Hugs to you, sweetie. You don’t sound crazy at all. I think it’s incredibly important to be mindful and educated.
That said (and you already know this), you’ve got to then find ways to let the worry go, because it can make you sick in and of itself. You’re doing everything you can for your health, whatever the odds. There are a hundred thousand stories of people who’ve defied dastardly odds, and conversely of people whose genetic profile (not to mention their diet, lifestyle, and age) looked great on paper, yet were stricken. It’s all a mystery, when it comes right down to it. So find out what you need to know, and then keep on living, loving, and being your awesome self!!! <3 xoxox
Thank you Tamara. You are always so encouraging and you are right about the worry. I’m hoping with time that the worry will go away. xoxoxo
I know it’s easier said than done. But focusing on the positive, choosing to frame your words and thoughts, meditating, exercising, all that good stuff works. Again, you know this! Hugs and much love to you!
It’s not fair, but, currently there is not iislglateon that prevents this type of discrimination by an insurance company.I, myself, visited a Genetic Counselor to talk about the possibility of having the BRCA gene. We overlooked my family history and then the counselor advised that there is no protection against an insurance company dropping your coverage if they see the genetic testing in your file, and there is no protection against the Insurance company denying your claims should you get the disease.The best thing that you can do, if you know there is a high risk of Breast cancer (and even ovarian cancer, as there is a link between the two) for you, is to begin having mammograms as early as possible and having any unusual lumps checked out right away. Do a monthly self-exam. Talk to your doctor about the best time of the month to do the exam as the tissues change due to hormonal fluctuations. Breast tissue is on the dense side until about 35, but, that doesn’t mean that you shouldn’t have baseline scans done if you are younger than 35.One thing to consider, also, if you undergo the testing an are found to have the gene and elect to have the prophylactic mastectomy you can still get Breast cancer. The Susan G. Komen website has excellent information regarding genetic testing, prophylactic mastectomies and how to reduce your risk of Breast cancer.My choice was to opt to be more proactive with screenings rather than go through with genetic testing. Until iislglateon is put in place to protect those who have undergone testing from being discriminated against by insurance companies, I don’t see a real benefit to patients who opt for the testing. Good communication of your concerns with your physician should lead to early prevention and detection techniques.
My mother and grandmother both had breast cancer. I so far have opted not to have the genetic testing. What would I do differently if it was positive or if it is a false negative? I don’t think I would opt for a preventative surgery since I’ve been through a cancer scare (thyroid) and it came back negative. Right now I try to keep very healthy and fit and I’m determined I can beat it the big C comes my way by being ready to take it on with a healthy strong body (my mom had cancer 3x before she passed). I DO however opt for early screening and have gotten my dr to approve ultrasounds and such and can submit them to insurance.
In other words: it doesn’t keep me up at night because I’m doing what I can to catch things early. Every healthy choice I make in life from food to exercise to sleep is something that is better for my body. I might have odds stacked against me, but in the end, I’m pretty positive I can kick anything’s ass. I panicked when I got an “inconclusive” test result for my thyroid and had it removed. Now I know the repercussions of hasty surgery. I don’t regret it, but it is something that really affects my life every day.
Just like Lily, out of my whole large family, only 1 hasn’t died of cancer, my grandfather. It is hard, but I wouldn’t like to live a life of fear because of it either.
“I might have odds stacked against me, but in the end, I’m pretty positive I can kick anything’s ass.” I love this. I think I could use a little more of you butt kicking attitude! I’m sorry to hear about your thyroid. It sounds like you learned a lot from that experience. Thanks for commenting and sharing your awesome attitude with me. It’s good to hear!
Oh Jenn. I can totally understand how this would wear on you. I hope never to have to make the decision myself but I have a feeling that I might do what you are considering, just to stop the anxiety. With your family history, you do have reason to be concerned.
As for me, I’m just living it up. I have cancer history all over my family and I do everything I can to do my screenings, etc. But I don’t have any specific smoking guns like with breast cancer. Having said that, my aunt did have it. I need to find out how much of a risk this brings me. I go for my breast exams, but could be much better about self exams.
Hugs- I really hope that the right answer presents itself and it kills me that insurance can decline you when you really do have reason to be concerned. I’m with Missy- call them, write to them. The squeaky wheel…! Hugs.
Thank you Debs. Sharing this publicly was so helpful. It’s been good to hear people validate my concerns and to have people remind me to keep living it up! In my research regarding my own situation, I don’t think having one aunt increases your risk by much if at all regarding bc. Of course, you would probably want to check that out yourself but if I’m remember right it’s not an increased risk unless she was really young when she got it. Then maybe. Miss you lots!!!!!! xoxo