Family resistance to genetic testing.

Kerri_Oz

My doctor has referred me for genetic testing. I've received some paperwork in the mail that needs filling out by me, along with a form to send to members of my family asking for access to their medical history and medical records if they are willing. After speaking to my sister on the phone today, I'm really conflicted about what I should do. I told her about the form for family members and instead of saying "OK, great, send it to me", she went all silent and didn't say anything. Turns out, she does not want to know. Despite our mother, only aunt on that side and grandmother all having breast cancer, my sister would prefer to not know if we have any genetic risk (even tho the family history speaks to it), and isn't interested in anything to do with genetic testing or counselling.

For myself, I do want to know. I would like to be able to take steps to protect myself if at all possible. But how do I go about getting myself tested and getting results, without kind of violating her right not to know if she doesn't want to. Even if I didn't tell her, she would still know if I went on to take preventive measures.

I know I am at high risk anyway, due to numerous things, so would I be better off just seeing if I can take preventive measures without doing the genetic testing? Or should I just do the testing anyway? I personally can not understand why one would not want to know, but I respect her decision if she doesn't want to know, but how does that work with my decision of wanting to know? I already feel like I'm walking around with 2 time bombs ticking away on my chest, so would getting tested make any difference to that, specially knowing that the testing available only scratches the surface of possible genetic abnormalities anyway? I mean, even if I did get tested and it came back negative, I don't think I would be particularly reassured because of the family history. I just don't know what to do

gb2115

you should be able to get genetic testing without getting info from family. I was only asked verbally for known history. If I would have said I don't know then I think they would have still done the labs.

If they aren't willing they aren't willing... doesn't mean you can't still get yourself tested and keep your results to yourself.

GraceB1

Even if your results come back positive that doesn't mean that your sister would automatically be positive. She would need to be tested to find out her status.

Legomaster225

I did not have to ask anyone for access to their medical records either. I completed the history and risk form online. If you don't know or unsure of something or someone's ailments you just leave it blank.

You have a right to know your risk and genetic makeup just as much as your sister has a right to avoid it if she so chooses. If family history and genetic testing indicate that you take proactive measures so be it. You don't need to explain yourself. If you let it go and something is found years from now your sister will know anyway when you seek treatment. Do not feel guilty for taking control of your risk factors. Your sister has a right to not want to know, and certainly to not release medical records but she does not have a right to make yourdecisions which essentially what is happening.

Lula73

gb2115 hit the nail in the head. You don't have to have family member's consent or their records to give your family history as you know it to the genetic counselor. It's nice to have their info straight from records as some people don't want to tell their families about cancer or other things in their history and thus way they can't cover it up. its nice to have it but not necessary. They use it to make a family tree history of any and all known cancers. If you don't know what kind or what someone was sick with or died from it's ok. It's just a hole in the tree and not a big deal.

Some people don't want to know and would rather deal with something when orif it happens to them. I'm like you and want to know. The genetic testing will give you the answers to your genetic risk. Make sure to ask for or look up the risk without a genetic component to bc.

As far as taking steps to protect yourself, what are you thinking about/willing to do? Double mastectomy? Anti-hormone therapy? Neither of those but just be hypervigilant with mammos (which definitely help but don't always detect the cancer)? Those are definitely things to think about. And for some women not something they're willing to do prophylactically so why bother with the test

NotVeryBrave

I had to fill out forms to take to the genetic counselor. No medical records were asked for. I did question my parents about their family history - my father claimed ignorance, which may have been true.

You can always keep a positive result from your sister. Yes - if you have prophylactic surgery she will probably guess the answer. But if this is helpful to you then she should not be standing in the way.

On a side note - my OB/GYN office recommended testing a few years ago when I was there for a routine visit due to me having an aunt that had ovarian cancer (even one of those moves you to the front of the line). I almost had the blood drawn and then thought "Do I really want to know?" and decided I didn't.

So if an individual does have a personal concern it makes a difference in how they feel. I ended up getting tested once I had a diagnosis of cancer - I wanted to know to make decisions about my plan of care. And to know for my children. I tested negative.

Genetic mutations only account for 5-10% of cancers. I feel like there's a good chance that something as of yet undiscovered is in my family - ovarian, breast, prostate, pancreatic - but maybe not and meanwhile we just list those things on histories and stay vigilant.

So on the upside - you very well may test negative which would be somewhat reassuring to you and relieving to your sister.

illimae

Do what's best for you. My mother and maternal aunt both have BC (diagnosed in their 60's), I was diagnosed 7 months ago at age 41. my mother and I both opted for genetic testing and were negative for all the known mutations, however, due to the family history and my age, the genetic councilor recommended screening for all my female blood relatives beginning at age 31. Cancer is s big deal, and for me, I felt like giving my cousins and such a heads up was the right thing to do.

Kicks

I haven't had any genetic counseling/testing so have no first hand info. I did ask about it and was told no reason to in my case. There are no living relatives or any type of cancer on both sides of my family for at least 4 generations.

Dont assume that your Sister does not want to know (unless she said so in so many words). The 'testing facility' wanting 'access (basically releasing)' her medical history and medical records would be a big NO WAY if I were her. To personally answer some questions sure I would but not to release my records to a company that has no legitimate reason to have access to them -WRONG!

Just how I 'see' it.

mustlovepoodles

I agree with you, Kicks. There is NO WAY I would give permission access to my medical records, no matter the reason.

I did have genetic testing because there is strong history of breast, colon, lung, and other cancers on both sides of the family. One aunt was 24 and another 43. There is even a male cousin who had breast cancer--strong indication of some genetic issue. And sure enough! I have two rare, but serious gene mutations which cause breast cancer, colon cancer, and all the other cancers represented in my family.

After I got my results I sent a letter to my siblings and all my cousins on both sides. So far, two cousins and one sister have asked for a copy of my results, so they can get their insurance company to pay for the testing. My brother and other two sisters don't want to know. My children decided to be tested, but my niece doesn't want to know. And they have the right to no know. Just as I have the right to pursue my own truth with genetic testing.

Go for it. You don't need permission from your family to seek genetic testing.

exbrnxgrl

I received extensive genetic counseling and had to take an online class to educate myselfabout genetics and breast cancer. I was considered high risk because of my ethnic background. While I did have to give a detailed family medical history (I called my parents to help with that), no one in my family was required to release their medical records. Just go ahead and be tested and don't worry about your sister!

Hopeful82014

Chiming in here with another vote for doing what is best for YOU. Genetic counselors like to have as much info as possible in order to determine which genes (and therefore which panel testing) are most likely at work in your family. That does not mean that they NEED the medical records. Fill out the family history and call it good. Once you receive your results you can ask whether family members are interested in the results. Even if someone declines, let them know the offer remains open. They may someday want to know if anything was found that could affect them.

Personally, I prefer knowing. Having knowledge that may help you avoid cancer would be a real bonus, in my book.

In terms of protecting yourself from cancer, staying at a healthy weight, exercising regularly and avoiding both tobacco and alcohol all seem to contribute (but don't guarantee anything). Good luck.

TruffleShuffle

I was asked for my family history of cancers on both maternal and paternal sides. Not medical records, just info passed on orally. I have nine sisters (three of which are half sisters). Only two sisters out of all nine wanted to be tested- my younger sister who tested came out negative thankfully (she may still take prophylactic action due to family hx and problematic mammograms), and my older sister who was tested hasn't received her results yet. My mother also opted to get tested, though she hasn't received her results yet. Even one of my younger sisters who has had a huge skin carcinoma cut out of her nose at age 33 doesn't seem interested in testing. It's just a very personal decision. Some people just don't do well with knowing that kind of information, and it disturbs their quality of life with anxiety and tough decision making. I am the kind of person who wants to know, so I can deal with it and move on. My Family history is full of different types of cancers- mostly breast. And my aunt died of ovarian cancer. I did test positive for the NBN mutation, and APC variant of unknown significance. So, early colonoscopies for me... yay. I started mammograms early just because of family hx. And they've always been suspect, with call-backs and diagnostic mammos & sonos. So... the positive for the NBN was a wake up call for me. I don't want to do this every six months for the rest of my life. I'm researching prophylactic blmx. It's very emotional, scary etc. So I do understand wanting to avoid these feelings. I just needed to know, needed to face it all, and need to take action. It's very personal. Peace to all

-C

Kerri_Oz

Thanks for all the replies

I feel better about going ahead with the testing now. I really would like to know if I have any gene mutations. And I guess it's like asthma or something. That runs in my family from my father's side, but seemed to only hit every other sibling (I was one of the lucky ones who missed out on that). I could tell my sister even if I do have any significant results, and let her know that me having it doesn't mean she has it. I've emailed the form for her to pass on to other family members, saying it's totally cool if they don't want to give the genetic testing place access to their records, but that I would like to have accurate info to put on the form I have to fill out for family history.

@Lula73 - at the moment, I'm thinking preventive double mastectomy with immediate reconstruction, most likely with implants for a quicker recovery time. I sincerely believe it would be better for me to take care of the problem as much as possible while I'm relatively young and healthy, instead of waiting and worrying for the rest of my life.

@Kicks - yeah, she came right out and told me she wouldn't want to know. It kinda surprised me, because I definitely want to know and do whatever I feel I need to do about it, and it didn't occur to me that she might not want to. Each to their own, I guess.

Artista928

Yes you can get genetic testing without fam knowing. My mom was dx'd 1.5 years after me with DCIS. MO brought up genetic testing. The only person in my fam that knows about my bc stuff is my bro. I asked him about it and he flat out told me not to bother doing it. He wouldn't get tested if I was a positive nor would anyone else in the fam. For them/us it's best not to know than to live a life of more anxiety and worry- which we have enough of. So I tell MO every time she insists no.

Also the person that doesn't want to know, would you be able to keep from spilling to her if you are positive? I can see myself spilling to my bro who doesn't want to know and will deal with whatever hits him in life as it comes.

Hopeful82014

Just because one member of the family is positive for a deleterious mutation by no means implies that other members will be also. I would not hold back on testing based on any family concerns.

Artista928

My MO wants me to get tested because anyone in the fam can have an issue: men with increased risk of prostate and other female cancers that I forget which ones. It's not just limited to the females of the fam, but men and women. I personally don't see the point in my getting tested if my fam would be stressed/anxious beyond belief- which they would be, bro is right on that one. So I choose not too. Also 10% of bc folks come out positive, so not a real high #. To me not worth the stress and should it be a positive for me, how would I not tell the fam even though their anxiety from young to old men and women would go through the roof. I told my MO to quit asking me. There is no deadline on doing the test but I don't anticipate changing my mind when fam is a don't want to know such things.

new__me

I had the test done at 60 after one sister was diagnosed at 41 and died at 53. Eight years later a sister diagnosed at 56 tested BRCA2 positive. Father diagnosed with bc age 91. Had UMX and tested negative. Mother tests BRCA2 positive and is 91 no cancers. Her mother died of ovarian cancer age 65.

I knew I wanted a BMX and ovary removal. I didn't want to wait for something to happen. I HAVE NO REGRETS. The worry i went through is gone.

Peace of mind. My daughter age 30 tested neg so i am relieved i did't pass this on to her or grandchildren. I used to worry and feel dread about it. My son is 37 and will test soon. He has a baby daughter. Same worries again for me. I hope he is neg.

Bottom line is knowledge is power. BRCA2 gave me an 85% chance of cancer. I took control.

vlnrph

My concern is that it sounds as though some people are getting tested via doctor order without prior genetic counseling by a specialist in the field who is certified and has a masters degree. A person like that can come alongside you when results are received and also help inform family members about their options.

Most physicians do not have the time or education to handle the complex issues described above. It's one thing to discover a mutation, another to decide what to do about it!

Did the MD suggest taking out life or long term care insurance? In the US, these categories are not protected from discrimination (health/medical is under GINA, passed in 2008, so coverage should not be affected)