For the rest of you... and for mom who probably will NOT pay any attention to my plea, scroll a bit....
I've discussed risk factors a number of times. I recently shared information I learned at Columbia about additional genetic testing that is available via BreastNext. Last night, during Monday night's twitter chat, Dr. Julie Gralow was a guest participant. She provided the link to the BROCA genetic test which is being done at University of Washington.
I did a run down of the genes they test in BreastNext and they are all included in the BROCA panel.
It may be time for me to consider this additional testing.
Hearing these words, spoken by my daughter, very matter of fact in her tone, called out from a different room..... Kinda sorta really sucked. There was no emotion. No fear (at least not in her voice). It was just very plain and quite simple:
"I know I'm going to get cancer. I just hope you're not around to see it."
It was like having a bucket of ice water poured over my head.
Thank you to everyone who sent me twitter support and love when I was still stunned, still trying to process those words. You ran to my side when I didn't want to be a fearless friend on January 4th and you ran again last night.
I've said it many times. I have an axe to grind at every point in breast cancer research: prevention of disease, prevention of metastasis, prevention of death.
It all counts. It's all important. And it's all about to take a financial hit. Unless someone pulls a rabbit out of a hat, SEQUESTRATION will go into effect this Friday.
Forget the Ides of March..... Beware the First Of March.
I woke up thinking about you. I woke up thinking about the millions of things we do to protect our children. I woke up thinking that even when we do it ALL right, it's a damn crap shoot.
ReplyDeleteI know your head is extra-jumbled today, and I imagine one thought that will float through in all of this is blame. AM, this is NOT your fault. (Mom, it's not YOUR fault either!) I know my own mother, with nary a positive mammogram, carries her own guilt for my diagnosis. I will he interested to see your thinking about the yest (and I will meet you in Seattle if you come here for it.) But no matter how genetically driven some cancers may be, its still an f-ing crap shoot.
I LOVE YOU!!!
I have a timely reply:
ReplyDeleteThanks to complex field of epigenetics, it's now clear 'DNA is not your destiny'
http://azstarnet.com/news/science/thanks-to-complex-field-of-epigenetics-it-s-now-clear/article_25c03351-b528-52e2-9d4b-28837cdec6a2.html
From the website (http://cos.arizona.edu/connections/genomics-now), I gather this presentation will recorded and uploaded to YouTube. I think that anyone who has concerns about diseases with a potential genetic link should watch it.
I would also like to point out that according to the direct-to-consumer genetic testing I had done with 23andMe, I have a decreased risk of a breast cancer diagnosis compared to the average woman*. Ha, ha. (*Not that there's any such thing as an "average woman.")
It's not all about the genes we're born with.
dear anne marie,
ReplyDeletethank goodness you had such amazing support during the time you were reeling. i know your are STILL reeling, so send you my warmest hugs to enfold you in solace and in hope. i agree with rhonda - it's not all about the genes we're born with; and with "regrounding" - it is NOT your fault", and it is NOT your mom's fault.
i love you, and i am here for you,XOXOXOXOXOXO
karen, TC
I agree with Lori and Karen that "It's not your fault, and it's not your mom's fault" I know so many people that have lots of breast cancer in their family and don't carry the known genes. I wish I knew the magic words to say to make this one better.I hope all of our love and support is helping. Hugs and XoXoXo - Susan
ReplyDeleteI dont know why some of us get breast cancer and some of us dont, hell I have all of the "risk factors" and still do. I get the stunned look and the question every time I lite up a cigarette, "you still smoke?!" Yes I still freakin smoke. And yes I know that I need to quit. Yes I know it increases y risk of cancer.. blah blah blah... Im not trying to make light of the situation nor am I thumbing my nose at anyone. I am attempting to quit but I'm not sure its going to make a difference. Maybe I'll get lung cancer?? Its not my mothers fault and I do fear that my daughters ( I have 2) are at a higher risk but we have NO history of BC in our family so as my onc tells me " No one knows who will and who wont, and even with a hx of BC you could be fine" So placing blame or making someone feel guilty is moot point.
ReplyDeleteI hope for you that you can move on and know that there are many of us supporting you!
Sorry for the mini rant!! LOL Best luck and many Hugs!
Oh look. A clever comment spammer. I just love the little tricks they use to get past moderation filters.
ReplyDeleteI suppose I should be "grateful" the blog has gained the attention of the spammers...... I'm usually on top of this stuff.... but, blame a jaw bone graft, pain and some vicodin.....
DeleteYou too? Sheesh.
DeleteI had the upper left done two weeks ago, and the upper right today. (Typing between ice pack applications.) I still have the bottom to be done, but only one side. I didn't actually have a graft on the left--just some kind of biologic to encourage my own bone to grow--but to make up for it, I received 3 grafts on the right.
My teeth and gums were just fine before chemo, but I now have ridiculous bone loss. You cannot know how irritated I am.
Feel better soon, AnneMarie. (Advil works better for me than Vicodin. You might want to give it a try.)
P.S. You've got another spammer down below. (Or maybe it's the first one back to try again.)
It is a crap shoot (emphasis on the crap, IMHO). I did all the "right" things unknowingly, bc why would I worry about BC at the age of 40?? I ate a meat-free diet, exercised 5 days a week, breastfed both kids longer than 6 months, got my yearly well-woman exam...the list goes on, and yet I still got breast cancer. It's not our fault, it's not our mothers' fault. It's a crappy crap shoot. The only upside to this mess is that it brings us together when we otherwise would be strangers. Hugs to you, my dear.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteI know this is an unpopular opinion in breast cancer world, but I am SO OVER genetic tests. Gene mutations, ALL of them, are rare. During my BRCA assessment, it was determined I had up to an 18% chance of having the mutation,(for the general population the chances of having the mutation is about a quarter of a percent, according to Nat'l Cancer Institute) and ultimately I did not have it. Big deal, I still got cancer. And knowing you have the mutation--so what? It cannot be un-mutated or cancer cannot be prevented. Yes they increase cancer screenings, but also recommend removal of breasts, ovaries, and whatnot. If they find a mutation for predisposition for brain cancer, will removal of the brain be recommended? I'm being absurd to prove a point.
ReplyDeleteIs BRCA testing (which I wasted time and money on for myself, regrettably) just another thing the medical industry hides behind to distract us from how little progress has been made in cancer prevention/research?
Genetic research has value I do not doubt that, but currently I think testing women and then cutting them up is stupid. The mutation plays a part in so few breast cancer cases. Spend time learning how to prevent ALL cancer for ALL women, regardless of genetic predisposition. That would help ALL of us with breast cancer.
I hear you.. and I agree... The mutation only accounts for very few of the BC dx. Understanding how to prevent all cancers should be at the top of all lists. I do think now that researchers seem to be focusing on the cells rather than the tumors, hopefully, they will make progress that will translate across all cancers.
DeleteHaving a genetic test turn up negative, proves nothing (as you can point to in your own situation)... and then, the weight of having a positive result cuts the other way.... What to do with the information....
It all sucks and we have little to show for all this money and research -- at least little that I see as meaningful.
Time for us to push a new agenda.... I'm just going to keep making noise and hope that things will change.