Dad won't test. :(
So...
I had my appointment with the genetic counselor yesterday and I am SO glad I took the wonderful advice I got here and went. It was very informational and I left feeling much clearer on the process as well as more positive about it. There were a few things that were disappointing, though, not related to the counselor herself, who was fantastic.
Number one, because I have no living close female relatives (father was an only child and I have two brothers) and all the cancer was in my paternal grandfather's siblings (so great-aunts), it is highly unlikely insurance will cover BRCA testing for me, even though the genetic counselor thinks I'm a very good candidate for testing. She is going to send a well-written letter explaining why she thinks I should test to my insurance companies, though, so the worst that will happen is that they will decline, leaving us to pay a little over 2k for the test, which, while it's not how I hoped to spend my money, is not out of our reach, thank goodness.
Then the bigger disappointment. She said that, if we're going to have to pay out of pocket for testing anyway, it would be more useful to pay for my father to be tested. A negative result for him would mean we could rule out him passing it on to any of his kids or grandkids and we wouldn't need to test me. (My mother's side is pretty clear.) A positive result would mean that insurance would then cover the much less expensive tests for the women in our family to get tested. So, basically, more of the family would benefit from having him tested.
Great, right? Wrong.
I called my parents, explaining what I'd just heard and my father only asked, "What is the test?" When I explained it was a blood test, he said, "I already get enough blood drawn. I hate needles. No thanks." I tried to explain how this would help more of the family than just getting me tested and my mother chimed in, "But your nieces are probably going to get it from both sides anyway." (Apparently their grandmother on their mother's side has had cancer.)
I'm trying not to be angry about this. I rarely ask my parents for anything and this is something I want to do not just for me, but for all of us and I'm willing to foot the bill for it. I'm thinking a lot of it has to do with all the cancer our family has gone through and my brother passing of an unrelated cancer a few years ago. I think my parents simply prefer to stick their heads in the sand and not know.
Ultimately, I've already decided that if my father won't get tested, I will. I'll also make sure that my nieces have information about BRCA testing so that they can make their own choice.
Comments
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That is really frustrating. The testing does not end with BRCA. There are a number of low penetrance genes that can confer a risk of cancer. The cost of his refusing to test could, ultimately, be a LOT higher than just the $2K for the BRCA test.
I think a lot of people really don't understand how significant BRCA really is. I didn't want to believe it at first either, but the more I read, the clearer it became. Only 4% of carriers in North America have been identified. Perhaps if you talk about it a bit more with him, give him an article to read?
You may want to find out if a local research hospital or lab has a way of taking DNA and storing it for future testing. I am considering doing this for my mom who has terminal cancer. This field will grow by leaps and bounds in the next several years. For testing that insurance may be reluctant to cover, it may save your family tens of thousands to be able to test that banked DNA.
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Does your father understand that if he tests positive, it means that he is at risk as well, for prostate cancer and other cancers? And that puts your brothers at risk too, if they inherited the genetic mutation from your father. And any nephews you may have (not just nieces). So this is not just about you. I don't know if that helps your case with your parents or not, but it's something your father should understand.
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I think sometimes at first pass, the thought of the test is very daunting. My DIL did not want to test initially 1. because she did not really understand what it meant, and 2. because she was, well, very scared. After her Gma passed of ovarian cancer (she was BRCA 1 Pos, as is DIL's mom) some other relatives approached DIL and explained that she really did need to test, and she is. Don't give up trying to get him to test. Maybe some of the other family can be enlisted to help. Best of luck.
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I wrote my parents a pretty good email outlining why it makes more sense to spend the money to test Dad rather than me. It sounds like, due to the way insurance works, like we'll have to pay out of pocket to test the first family member regardless of the results, so why not test the one where the result will be the most informative? I also included links to further information about the test.
My family has a LOT of issues when it comes to cancer. I think people on here might understand better than other friends I've talked to about his reaction because having a strong history of cancer in your family really changes a lot of the family dynamics. I'm guessing that my father just doesn't want to think about more loved ones (or himself) getting sick and possibly dying. He also likely doesn't want to think about the possibility that this could be caused by a genetic mutation he carries and has passed on to his children and grandchildren. My family has adopted kind of a strange fatalism when it comes to cancer, likely as a coping mechanism and it seems like their latest attitude about it is that cancer is pretty much inevitable and it's better just to avoid thinking about it as much as possible.
About all I can do is put the information out there for him and anyone else in the family and hope that one day they'll make their own choices. One concern I have is that if I do test and test negative that other family members will think this means they don't need to test. My negative would really mean nothing for anyone else except my own children.
It was suggested, that if insurance does decide to cover testing, I should also be tested for P10 or Pten. I'm going to look for more information on it, but the genetic counselor said it was a much lower possibility, but might be worth it if it can be covered since there is an incidence of both lymphoma and breast cancer in my family.
Thank you all for such great information and support. I think I likely would have given up and stopped at my OB/GYN's discouragement long before now if it had not been for this board!
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Geekyknitter, I went through much the same, but my dad finally decided to do it if the geneticist wanted him to. MY tests were not blood draws-no needles. I swished Scope mouthwash & spit it in a vial.
They tested me for PTEN & CHEK2 before BRCA because my dad's mom & sister both had colon cancer & I had ovarian cancer.
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I just finished a little reading about PTEN and I can see why it came up. My niece had a benign tumor that had to be removed from her upper palate. (Poor thing has had countless surgeries for it and has an appliance with false front teeth and has since she was a teen.) My brother had Hodgkin's disease in his 20's and later on in life, died of kidney cancer at age 41. My mother has had countless fibriods and had a hysterectomy when I was born premature, pushed out of the way by a fibroid.
Yeah...we have an "interesting" family.
Given the rarity of PTEN, I can see why she'd want to focus on BRCA if we have to choose. Most of the women on my father's side of the family died of breast cancer, with one dying of ovarian cancer. Out of a set of 11 siblings, all but my grandfather died of some kind of cancer and 8 of those were women dying of either breast or ovarian cancer at young ages. They started dying at the age I am now, so I think if there's anything I can do, now is the time to do it.
My genetic counselor (who is absolutely amazing, really) just called to tell me she's submitting the paperwork to insurance now and hoping we hear back promptly. Fingers crossed that they'll cover it and I'll have my negative!
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i was negative for everything.
I just loved my genetics doc too and the other docs say she's the smartest cookie of them all. She looks like she's about 17
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Has your genetic counselor considered the Broca panel testing out of the University of Washington? I've posted about it before. I had BRCA testing first, then Broca when BRCA came back negative. They sound similar but are different tests. Now that Myriad doesn't have a patent on the BRCA genes, the Broca panel includes BRCA 1 and 2 as well as 40 (at least last year when I did the test) other cancer-related genes - including PTEN. I'm not sure of the cost, but from my research last year, Broca covered more non-BRCA genes than any other panel I found from Ambry and others. Genetics is a fast moving field though and my info could be obsolete. Worth asking your GC about anyway - especially if the money is coming out of your own pocket. I think it has to be a blood draw but you could ask that too. Good luck!
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I'll ask, but I likely could not afford a full BROCA panel if insurance does not cover it. Just BRCA1 and 2 may cost me over 2k and adding PTEN alone would increase that to over 3k.
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Knowing my dad, the objection to having blood drawn was far more likely to be an excuse. I think he really just does not want to know if he has it, let alone if he's passed it on.
I sent my mother some good information and we'll see. Maybe he just needs to think about it a while.
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my counselor told me that if she had known before my Dad's last colonoscopy that she could have tested his polyps removed.
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In the midst of all this, I still have the breast pain that led me to go to my OB/GYN in the first place, which led to the diagnostic mammogram, which the anxiety of led me here to learn more about BRCA testing. My mammogram came back BIRADS negative, but weeks later, I still hurt. :P Of course, my OB/GYN's office cheerfully told me, "the report says to come back when you are 40 for regular screening mammograms."
I guess I'm supposed to just hurt until then. I found my genetic counselor on my own and I'm hoping I can at least rest easy ruling out a BRCA mutation, which should make that waiting a little less emotionally painful, if not phyiscally. It's been two months since I could cross my arms without pain or sleep on my stomach without waking myself up.
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geekyknitter - I understand your frustration. Years ago NIH was doing some of the first studies looking at genetic predisposition for colon cancer. My mother's mother died at 56yo from it and one of her aunts and her brother were diagnosed later but also died. I tried to get her to enrolled to see if she had a genetic predisposition and, as such, could have passed it on to her kids. She refused. Head in the sand is the only explanation. Like you, I have a strong FH of BC on my paternal side and no primary female relatives on that side. My PGM and 4 of her 5 sisters had BC, my dad and his 2 siblings had prostate cancer and my brother was diagnosed with prostate cancer at age 50, 6 months before I was diagnosed with BC at 48yo. My insurance covered the BRCA testing for the 3 genes linked to Ashkenazi decent but it didn't cover the whole panel. I have looked into having the BROCA panel done and the cost was similar to the cost I was quoted for BRCA testing 3 1/2 years ago. But the test was more then $3500 then. I was BRCA negative for the genes tested. For my kids, I'll probably pay out of pocket for more extensive gene testing but have to get them through college first! One day at a time!
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Painful breasts are unfortunately very common, but while it can be a sign of cancer, usually is just hormonal or fibrocystic. It is one of the most common reasons women go to the doctor. Doesn't make it feel better though, does it? If you are mid-thirties your hormones are already starting to change. I can understand with the family history why it makes you nervous though.
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You can call UW to get information about pricing. Maybe they have financial assistance for people whose insurance won't cover it but testing is indicated?
Client Services at 1-800-713-5198
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first thing i think of is whether your dad can have blood drawn for the test during a blood draw that already has to happen. that way, he doesn't had another stick… just another tube?
sorry it's so difficult.
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Thank you all for the advice and support!
I have some great news. I just got a call back from the University of Washington and it does sound like my insurance is going to pony up for testing. I'm working to get my blood draw scheduled before my plan rolls over in March and my deductibles reset.
As far as my Dad, while it would seem like finding a way for him not to have to get stuck again would be the answer, I know my father. I know him well enough to know that no matter what logic I push at him, if he's made up his mind that he doesn't want to do this, there will be an excuse. If it's not the stick, it will be something else. That is just the way he is. As it is now, I haven't gotten any replies to messages I've left since that conversation. I let them know today that it looks like my insurance will come through, but that my test results will only be relevant for me and my children, not for the rest of the family.
I know it sounds weird and it isn't logical, but my family goes back and forth between believing that cancer is inevitable and you're better off ignoring it. (My father ignores his high blood pressure and diabetes much the same.) Or, they wrap themselves up in it as a kind of badge of honor. I think it is just how they cope with having a family history like ours. It's dysfunctional, but my family are not the type to seek counseling for anything and I know it really is not going to help if I try to push them more...if anything it will make them more resistant. About all I can do is provide them the information and let them make up their own minds.
I'm hopeful that I'll get a negative and get on with life. I've known since it started that my breast pain is likely nothing serious, but I'd just like to get some relief on that front and it's frustrating thinking I might just have to live with it like this. Somehow I'm guessing if men commonly had this kind of pain in their testicles...that there would be treatment options like crazy out there!
Thank you all again...this really is an amazing community!
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GK - Tee Hee re: men. I'm glad you will have some answers soon. Please let us know how everything turns out!
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geekyknitter, I'm so glad that your insurance is coming through on this.
As for your family being dysfunctional about this, isn't every family dysfunctional about something? (or perhaps is more appropriate!).
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It's true, every family has their "quirks."
For their part, my parents are no longer speaking to me and aren't responding to any attempts at communication. This generally happens any time I do something they don't approve of and usually ends after enough time has passed when they will contact me and we will pretend nothing happened. My guess is that this is just hard for them and they're worried about me and the rest of the family and can't deal with the idea there could be more cancer in our family.
Sometimes it's best not to take what they do personally and realize it's more about them than me. I have other sources of support as I go through this and they'll come back around when they're ready.
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Thank you.
It used to bother me when I was younger, but I've grown to kind of be able to separate their behavior from myself, if that makes any sense. I know they love me and it's likely that part of this is their fear of something happening to me, so I try to focus on that rather than the awkward way they handle things like this. I'm sure I sometimes do the exact wrong thing with the best of intentions!My genetic counselor is out of the office today, so I probably won't talk to her until next week. She also submitted for a breast MRI and I'm wondering if she will want to first see if we can get that done before testing for BRCA since if the result is negative, insurance won't cover the MRI and, even with a negative BRCA result, with my family history it might be a good idea to have it done. I have until March before our insurance deductible rolls over.
I actually feel pretty positive about this process. I've always known I had a high risk and it feels good to actually be able to do something, however small, to try to help that, rather than simply waiting for what seemed inevitable. I also keep telling myself that, unlike the Hunger Games, the odds really are in my favor here for a negative result. If it is positive, then I'll likely have to process that a while, but I'll have some time before I have to make any big decisions to let it sink in and do research on my options. It feels empowering, if nothing else, that either way, I'm taking charge of this rather than just waiting.
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I am glad your insurance is coming through!
I can understand the frustration...there are some similar mindsets in my family, as well.
Obviously one thing to keep in mind (and I am sure your genetic counselor went over this with you) is that without an affected member testing, a negative result will still leave you with a lot of uncertainty. Your father is not affected, so even if he had tested and turned out to be negative, there would still be this uncertainty for you. Yes, you will know you will not have a BRCA (or PTEN) mutation, but you also won't know if any affected members in your family have/had one either. As someone else pointed out, there are MANY potential mutations and variants that can increase risk, but very, very few of them actually have any clinical guidelines for action (only about 6 of them do, including BRCA, CHEK2, PTEN). So, for the vast number, which may be low to moderate penetrance, there is no real "course of action" with them so there is often caution advised in testing for them until the research is more developed (and there are clinical guidelines).
If you do come back negative, your genetic counselor should discuss her recommendations for you, and provide you a risk assessment anyway.
Still, despite the risk of ending up with an uninformed result, for many just knowing they are negative for BRCA mutations is important. Some are willing to take those results and decide their risk is something they can live with (either with or without screening). Some are comforted in knowing they may still be at risk for some familial cancer, but not "BRCA-related" cancers/cancer risk. I am an uninformed negative for BRCA and while that does leave me with a lot of uncertainty, that information is still important to me. While there are some things I cannot be sure of (like whether I have a risk for ovarian cancer) I can proceed on what I DO know. I do know I have tested negative for known harmful BRCA-mutations, I do know I do have some other lower-penetrance risk variants in other genes from other testing, and combined with my family history, and risk assessments/discussion with my genetic counselor about a likely polygenic risk and so on, feel confident in the path I am choosing.
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The way I have been thinking of this is kind of like this...
If I get a negative or uncertain result (depending on the further info on that particular gene mutation), I will still treat myself as I have been, believing that my family history puts me at increased risk and I need to be vigilant and keep up with all recommended screenings. (I am a little disappointed to see the recommendations have changed to no screening mammograms until 50...to me that seems a little late even for the general population!) I won't treat it as, "Great, I don't have to worry about that cancer thing now!" But more of a status quo.
A positive result would, for me, mean researching all the options available and taking preventative action. I'm young (36), healthy, and I have had 2 children, so I feel like all the options might be open to me and now would be a good time to go through them.
I have my blood draw on the 15th, next week. I'm expecting that results will take several weeks, if not a couple of months, right?
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geekyknitter,
It sounds like you have a good action plan in place whatever the result. If you DO come back negative, I would really discuss with your genetic counselor whether you are still a higher risk and personal screening recommendations, and if she does think you are still higher risk, she can perhaps make referrals to higher risk providers or clinics.
Though the recommendations are not until 50....in my experience this is for the "general population" and women who are higher risk or have other potential high risk conditions - even without BRCA mutations - can actually get screening much earlier. Where I live screening recommendations are "officially" at 50, but women of general population can also choose to start at 40. I on the other hand have been able to get mammograms since I was 25, and am now able to also get MRIs since I have had risk assessments that put me in the high risk category (I am turning 35 this year) and made those recommendations.
Who are you doing the testing through? I went through Ambry Genetics and I had my results back in about 2 1/2 weeks. However, some panels can be closer to 3 months, and up here in Canada I know there are some who have waited months, if not a year+ for results! The labs usually have turn around times posted on their websites and such if you have that information.
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I'm testing through the University of Washington, likely because it's my closest lab. (I live in Alaska.) I'm ok with waiting a couple of months...after all, if I have the mutation, I've had it my entire life and a few months isn't likely to make much difference one way or the other. A year+, though, might be a bit much to wait.
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Great thread going Geekyknitter! Remember you have a 50% chance of NOT being BRCA+ even if your father is a carrier and it sounds like you suspect he is. I'm BRCA+ and figured out it came thru my father's side as one of my paternal first cousins and I had the same gene address. Just another thought on why your dad may not want to know- your mother...I chose not to let my parents know (both late 80's) as my mother would have reminded him everyday...not that he has any control over what gets inherited. Pain in your breasts can be caused by many other things than cancer, like too much caffeine. Wishing you well on your information journey.
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Geekykite, it is a good idea to get the MRI done before you get the test results back. I did the same thing. :-) They wanted me to come in for a "second-look" ultrasound after the MRI, and I actually put that off until after I got the results back. Knowing that I was BRCA1-positive, they were more conservative with the ultrasound than they might have been otherwise. In fact, the head of the radiology facility took over my case at that point.
You will hopefully still qualify for the high-risk screening if your test comes back negative, but if you can get the MRI covered, get it. I know my insurance company won't disqualify you for a negative test result, but they can still be a pain about approving things at times. Note that a breast MRI has to be scheduled around your monthly cycle (days 5-11 or something like that), so if you get the pre-approval, call to schedule it right away.
My test also came back in about 2 1/2 weeks (3 weeks by the time I got to my appointment with the genetic counselor), but it was also with Ambry. I'm not sure how long it takes with UW.
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My Broca panel took 3 months to get results last year. Please keep us all posted!
I have to comment that I really admire your attitude about all of this as well as your family issues. It sounds like you live your life with a lot of grace (even though I'm guessing you weren't raised with the same attitude by what you've said about your parents) and your children will benefit.
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Yep...I keep reminding myself that the odds are in my favor. We have no way of knowing if my grandfather was a carrier and if he wasn't, Dad isn't. Even if he was, there's only a 50/50 chance he passed it on to Dad. So, really, the odds decrease more and more the further we travel down the family tree. It's enough to be worth testing, but odds are it will be negative.
As far as screening after a negative, I'm not sure how my insurance will handle that. I have problems getting classified as high risk simply because I have so few close female relatives. The breast and ovarian cancer was all in my Grandfather's generation, where it was rampant and basically killed off almost all my great-aunts before they had children, so there are no female descendants from them to look at. Then, my father was an only child. I have no sisters. I am the oldest surviving female in the family tree...at 36.
I've long lived my life in the shadow of cancer. I watched my great aunts and uncles die of it growing up, one after the other. I watched by brother fight it once in his twenties and win (I was in junior high) and then again in his 40's and lose. (Hodgekin's disease followed by kidney cancer.) I try not to let it dominate my life, but I also know that if it's going to take me...it's not going to do so easily. I do whatever I can to lower my risks and then I live the heck out of life.
On the bright side...after 2 months straight of some pretty nasty breast pain, my breasts DON'T HURT today!!!!
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Just a quick update for those following along...
Insurance definitely is going to cover the testing AND...they're going to cover a breast MRI. They said that if I test negative and it is determined I should have more regular screenings THAT will need to go to a medical review board, but they will cover my first breast MRI and the testing without review. I plan on scheduling that asap so I can get that done while we're waiting on test results from genetic screening.
I'm glad that this is all getting taken care of and out of the way, regardless of the result.
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