Post # 1
So in the comments on some other posts I’ve read that some bees have had genetic testing for cancer…Ms. Polar Bear brought it up…sorry I’m stealing your topic! Both of my father’s sister’s had breast cancer, both at a fairly young age. Both were breast cancer survivors, one eventually passed away from bone cancer. My father and half brother both passed away from leukemia (supposedly not genetic…I beg to differ). My cousin (daughter of the aunt that passed away from bone cancer) has also been diagnosed with breast cancer. Obviously this has caught my doctor’s attention. It was suggested by one doctor that I get the genetic test done to see if I have the gene that could cause breast cancer. It took a lot of soul searching and a lot of research and discussions with Fiance and my brother (big shot at a cancer drug company, knows more about the disease than I will ever know), I chose not to have the test done at that point about 2 years ago. It is very uncommon (although I probably wouldn’t go so far as to say rare) for women to get it under the age of 30. At that point, and as of right now, I’m not ready to know. I am not ready to do anything about it. I am not ready to have my breasts removed, even knowing that I could get implants. I’m hoping to breast feed my children and am just not ready to face that decision. I admit it, it’s probably childish of me, I know that just because I don’t have the test done doesn’t mean it isn’t there, but I also know that just because the gene is there, it doesn’t mean that I will get cancer. I just know myself and I know that I will constantly worry. For right now I’m not ready to worry about it even more than I already do. However, 30 is coming up quickly and it is something that I’m going to have to get ready to face. I think it would be careless of me not to get the test done at that point. Although I know it could potentially alleviate my fears now, it could also potentially make me a basket case. I’m hoping that in a couple of more years I’ll be ready to face it head on. And who knows, a couple of more years might be all it takes to find that cure.
Who has experience with this and what’s your story?
Post # 3
Sorry to hear your story. We have a similar story in his family. On his father’s side each blood related female has survived or passed from cancer. Ovarian and breast are the two most common and every single female that is related to my Father-In-Law by blood has had one of those cancers. One of DH’s aunts passed in 2009 from ovarian. She had gone into remission and it had come back so many times. She refused treatment the last time, fell ill with some sort of sickness (I think it was pneumonia) and died a week before Christmas. DH’s other aunt, wanting to avoid ovarian, had a complete hysterectomy and ended up getting breast cancer. DH’s grandmother also passed from ovarian and several other female family members that I don’t know the stories of.
Since we’re pregnant now, if we have a daughter she has some crazy high percent of developing cancer at some point. We haven’t gone in for any testing and probably won’t but it’s scary to think how high of a chance she would have.
Post # 4
i got the brca test about a year ago (i was 26 then). i have a family history on both sides of my family–my mom is a breast cancer survivor–she was diagnosed when she was only 40, and my paternal grandmother died from breast and ovarian cancer that had spread. and there are other types of cancer in my family tree too, and i’m ashkenazi jewish, which increases the risk. but the test came back negative. it’s a big relief, but the test doesn’t test for everything–they don’t know everything about it–so i still could be genetically more likely to get cancer via some gene they haven’t mapped yet, or i could get it even if i’m not more genetically predisposed. or i could not get cancer at all. so in some ways, it really doesn’t change much for me–i’ll still get regular mammograms and such.
i mulled over the decision to do it for about a year after my dr. first told me that i’d be a good candidate for it. i’m the kind of person that likes to know as much as possible about everything i can–i’m a researcher, so that’s a necessary trait for me to have–so in some ways it was a no-brainer to do it. but still it was a hard decision, and it was scary to wait for the results. but i think it’s better to know and be able to plan ahead as much as possible…
Post # 5
@sit1010: Hi there.
So you’ve probably heard my story already, but I will add it here since it is relevant.
Last April 1st my aunt Martha was diagnosed with Stage 3C ovarian cancer at age 40 (which is pretty young and which meant it had been growing unchecked for awhile). So at 22 years old I (more like my parents) thought it would be a good idea to get me tested. For some reason my mother (who was closest to Martha biologically) did NOT want to get tested first. So I did it.
The blood test itself was simply, but once you know you can never get that ignorance back. I tested Brca2+ which they tell me is actually good, because it would not be as aggressive and resistant to treatment. Also, my risk of ovarian is slightly lower than Brca 1+. I had a crisis of faith as a result and have a major phobia about dying, not that I wasn’t always a little questioning before but whatever.
After they confirmed the positive status in the doctor’s office they told me that they would want my ovaries sooner rather than later. They however don’t give you the definitive answer of when. I was sent to a genetic counselor. She went over the statistics with me and told me that at age 35 they would like to take out my ovaries. The breasts are of course mentioned but since I don’t have a history of breast cancer in my family it didn’t appear to me that she was as concerned. Nothing says you HAVE to get both cut out. There is the option to monitor heavily (my mother actually told me not to remove anything and just monitor) but like everything else it has risks.
So what happens afterward? At age 24 they want me to get MRIs as well as mammographies for the breasts, and at 25 they want me to get pelvic and vaginal ultrasounds about every six months. Get used to drinking and holding water. Get used to probes. After the first round it really isn’t as bad as you would think.
Something else you should consider. I read a blog set called blog for the cure. One girl was diagnosed with ovarian cancer at 20, died when she was 22. It is NEVER too early to get breast/ovarian cancer. It is worth knowing.
Post # 6
@Ms. Polar Bear: It really is worth knowing. It’s bizarre to me though that this doctor recommended the genetic testing but never sent me for a mammogram. And none of my other doctors have sent me for a mammogram. I’m going to insist on one after my next appointment. Unfortunately mammograms aren’t foolproof and neither are self exams. My cousin found the lump herself. She had been getting mammograms at a very young age and very strict about them. When she got older she found the lump herself, literally just a couple weeks after a mammogram. I guess because it’s on my father’s side and there’s no history of it on my mother’s side they don’t seem as concerned. But that’s why it’s so weird to me that they wanted the genetic testing but not mammograms. I prefer to stay ignorant regarding my chances of getting it but will still be as vigilant as possible when it comes to making sure I don’t have it, or if I do it’s caught early. My brother’s wife went in for her annual when they started discussing having children and they discovered she had cervical cancer. It was stage 0 and she was able to have 3 kids after having part of her cervix removed so I’ve seen proof of the success of catching cancer early. And unfortunately I’ve also seen the long term affects of not catching it early. I watched my dad with leukemia and we’re watching FI’s grandfather now, he raised Fiance, and is unfortunately losing his battle with lung cancer, when they caught it it had already progressed to stage 4. The man is in bad shape and is just ready to die to end the suffering. The anniversary of my dad’s death was just last week and knowing what FI’s grandfather is going through (and knowing what Fiance is going through) life’s been a little difficult to say the least. I have definitely learned to stay on top of my health.
Post # 7
I’m actually supposed to get my results from the BRCA test this week. Cancer is on both sides of the family, my mom is a breast cancer survivor–she was diagnosed pre-menopausal at age 43. Her grandmother also died of breast cancer and there are some other cancers on her side of the family. On my dad’s side, my cousin had breast cancer, my grandmother died of stomach cancer, and my aunt died of a rare type of cancer that was in her ovaries, and more.
I hadn’t thought about doing the test. My doctor told me that I should start having mammograms 10 years before the age of my mother’s diagnosis (which is 33 and this year for me).
It’s weird for me because the choice was taken away from me to get the test. It was ordered because I am undergoing testing to be a kidney donor for my little brother and so pretty soon I’ll know whether I want to know or not.
It has been a nervewracking three weeks and now I can’t wait to know the results.
Post # 7
@sit1010: About the mammograms. I had to get the genetic testing FIRST before they could offer me all this extra testing. And you’re right mammograms don’t catch anything, but that’s why I will eventually have to get MRI’s. The MRI pics up ANY dense tissue. It might give you a scare, but it might save your life.
Once you get the testing done, ask for those extra screenings. And of course, be aware of the signs! Self-Screenings are important (I’ll be honest–I’ve been very lax about this).
Post # 8
@sit1010: Sorry for all your losses, and about your FI’s grandfather. My grandfather just passed away on Sunday from colon cancer that spread to his lungs. The doctor mentioned that we should all get tested for the gene, since some other family members also had colon cancer. With everything that has been happening, I haven’t thought about what I want to do yet, but I guess I should decide soon.
Post # 9
This is interesting to read. I haven’t looked into it but my mom, maternal grandma and great grandma’s all died of cancer. All different cancers. No doctor has ever suggested it to me
Post # 10
I work in cancer research, and with genetic counselors. I would say that if the risk is high enough for your doctor to refer you to a genetic counselor, then go for it. I can’t emphasize enough how important early detection is! It saves lives. Also, the genetic counselors can help you better understand your risks if you do test positive for any of the genes. I’m very sorry for all your losses, and good luck!
Post # 11
I’m a (student) nurse, and a big supporter of early screening. It’s so important on catching things early, and it results in better outcomes all around.
But when I took a random screening test for my aunt’s start-up company, never thinking that it would show anything, and found out that I was in the “positive” group for breast cancer at 20? It threw me. My dad wants my sister and I to get the genetic testing done, and to go for breast thermography, and I just want to shut my eyes and go on living life like nothing happened. I don’t want to have to go through chemo/radiation/surgery this young. I want to be able to breastfeed my child. I want to be able to do that SO FUCKING MUCH. And yes, there’s the fear that my fiance wouldn’t find me attractive anymore, no matter how false I know that that is.
So I guess what I’m saying is I totally understand. On the one hand, I know how important it is to KNOW, and to know EARLY…but on the other, I feel like what’s the damn point of knowing, if it’s just going to screw everything up either way?
Cancer sucks. : / Fuck cancer.
Post # 12
My doctor recommended I make an appointment with a genetic counselor…my mom had breast cancer at 45, and my doc thinks I should get the Brca test. I keep putting it off and my mom isn’t helping–she does NOT want me to get it. Reading this thread is motivating me to make an appointment though!
Post # 13
@Ms. Polar Bear: How did I miss you earlier thread? I was referred to take the BRCA test after my mom had her second case of pre-menopausal breast cancer (thankfully she is fine now) and tested positive for BRCA2.
It’s about knowing the steps to take (and thank you for the reminder to take them – it’s been over two years since my last MRI) and about knowing that you have a condition that needs to get managed.
It sucks knowing that within the next ten years I am going to have to have some serious conversations about getting my ovaries removed. But it would suck more to get blindsided by cancer. I’m glad I know that I need extra screening, rather than waiting until I’m 40 to start getting mammograms.
@sit1010: I actually need to head out in a minute, but feel free to PM me if you want to discuss/chat/know more about my story.
Post # 14
@hilsy85:If your mom got breast cancer at 45, and without knowing your family history, I’m willing to bet you have the gene. Cancer usually strikes people at 65. Anytime it’s younger there is a chance that you could be genetically pre-disposed. I’m not a genetic counselor so I am not sure if it means always but given that your doctor wants you to take the BRCA test…I’d say you’re at risk. Get it.
@Entangled:I agree. After the initial shock, I think it’s worth knowing. My mom’s a nurse, took out her ovaries (at 43) and told me not to do it. To stick with the early screening for as long as I can. I don’t know what I am going to do about that. I am so terrified of dying that I want to rip them out asap, but then…I don’t want to have to go through menopause at 35. Meh.
Post # 15
@Ms. Polar Bear: Yeah, I really want to put off the ovaries as long as I can. I’ve moved a lot the past few years and changed doctors and when I tell them I’m BRCA2+ and don’t want children, then usually tell me to evaluate at 35, but I did have one tell me I could think about doing it now (I was 26 or 27 at the time). Eek, no. I can’t handle that, but at some point the risk is just going to get higher.
I really need to contact a specialist now that I’ve moved out here to talk about this stuff and also schedule another MRI… it’s one of those things that keeps falling through the cracks and really, really shouldn’t.
The other thing about knowing vs. not knowing is that there are tons of genetic links to diseases out there. In some ways it’s better to have one that people know about and can plan screenings around instead of a genetic risk that hasn’t been discovered yet.