It's been 66 hours since I had my annual Mammogram/MRI. This is what the inside of my brain sounds like:
Why haven't they called me? Is something wrong? Why does the hospital run so many commercials during the Olympics? Is it to keep reminding me that they haven't called? Is not calling yet good news or bad news? Google "Mammogram Photos." Should I call them? Again, with the damn commercials. Maybe I should read the Message Boards on FORCE. No, that'll just remind they haven't called. Maybe no call is good news, if it was bad news they would want to talk to me right away, right? Why haven't you called me yet? Google "Breast MRI Photos." Nope, no missed calls. Okay, think about something other than boobs. God, my bra is really annoying me right now. Ah! Bras and boobs! Okay, phone's ringing. Not them. Why haven't they called me? Read the news, yeah the news. Damnit! Another Beaumont ad! Stop advertising and just call me!
Showing posts with label breast cancer. Show all posts
Showing posts with label breast cancer. Show all posts
Thursday, August 9, 2012
Sunday, August 5, 2012
A (stolen) diddy about Mammograms
For years and years they told me,
Be careful of your breasts.
Don’t ever squeeze or bruise them.
And give them monthly tests.
So I heeded all their warnings,
And protected them by law.
Guarded them very carefully,
And I always wore my bra.
After 30 years of astute care,
My gyno, Dr Pruitt,
Said I should get a Mammogram
“OK,” I said, “let’s do it.”
“Stand up here real close” she said,
(She got my boob in line),
“And tell me when it hurts,” she said,
“Ah yes! Right there, that’s fine.”
She stepped upon a pedal,
I could not believe my eyes!
A plastic plate came slamming down,
My hooters in a vise!
My skin was stretched and mangled,
From underneath my chin.
My poor boob was being squashed,
To Swedish Pancake thin.
Excruciating pain I felt,
Within it’s viselike grip.
A prisoner in this vicious thing,
My poor defenseless tit!
“Take a deep breath,” she said to me,
Who does she think she’s kidding?!?
My chest is mashed in her machine,
And woozy I am getting.
“There, that’s good,” I heard her say,
(The room was slowly swaying.)
“Now, let’s have a go at the other one.”
Have mercy, I was praying.
It squeezed me from both up and down,
It squeezed me from both sides.
I’ll bet SHE’S never had this done,
To HER tender little hide.
Next time that they make me do this,
I will request a blindfold.
I have no wish to see again,
My knockers getting steam rolled.
If I had no problem when I came in,
I surely have one now.
If there had been a cyst in there,
It would have gone “ker-pow!”
This machine was created by a man,
Of this, I have no doubt.
I’d like to stick his balls in there,
And, see how THEY come out!
Be careful of your breasts.
Don’t ever squeeze or bruise them.
And give them monthly tests.
So I heeded all their warnings,
And protected them by law.
Guarded them very carefully,
And I always wore my bra.
After 30 years of astute care,
My gyno, Dr Pruitt,
Said I should get a Mammogram
“OK,” I said, “let’s do it.”
“Stand up here real close” she said,
(She got my boob in line),
“And tell me when it hurts,” she said,
“Ah yes! Right there, that’s fine.”
She stepped upon a pedal,
I could not believe my eyes!
A plastic plate came slamming down,
My hooters in a vise!
My skin was stretched and mangled,
From underneath my chin.
My poor boob was being squashed,
To Swedish Pancake thin.
Excruciating pain I felt,
Within it’s viselike grip.
A prisoner in this vicious thing,
My poor defenseless tit!
“Take a deep breath,” she said to me,
Who does she think she’s kidding?!?
My chest is mashed in her machine,
And woozy I am getting.
“There, that’s good,” I heard her say,
(The room was slowly swaying.)
“Now, let’s have a go at the other one.”
Have mercy, I was praying.
It squeezed me from both up and down,
It squeezed me from both sides.
I’ll bet SHE’S never had this done,
To HER tender little hide.
Next time that they make me do this,
I will request a blindfold.
I have no wish to see again,
My knockers getting steam rolled.
If I had no problem when I came in,
I surely have one now.
If there had been a cyst in there,
It would have gone “ker-pow!”
This machine was created by a man,
Of this, I have no doubt.
I’d like to stick his balls in there,
And, see how THEY come out!
Friday, July 13, 2012
Family Onset Age - Insert horror movie soundtrack here!
Well, I'm in the weeks leading up to my annual exam. This year we're doing the mammogram and MRI at the same time. Why? I'm not sure, but it's what my NP and Dr ordered.
Every year I'm stressed out, high anxiety, on full alert in the weeks, days, and hours leading up to my appointment. This year you can multiply that by a kajillion because this year, I've reached my family onset age.
I'm hoping my ability to only compartmentalize my feelings kicks into overdrive and calms my crazy ass down! I've been able to only think about the big BC once a month when I do my SBE, let's see if I can make that compartment even larger for this looming day.
T Minus 23 days till I spend a thousand bucks to not have cancer!!
Every year I'm stressed out, high anxiety, on full alert in the weeks, days, and hours leading up to my appointment. This year you can multiply that by a kajillion because this year, I've reached my family onset age.
I'm hoping my ability to only compartmentalize my feelings kicks into overdrive and calms my crazy ass down! I've been able to only think about the big BC once a month when I do my SBE, let's see if I can make that compartment even larger for this looming day.
T Minus 23 days till I spend a thousand bucks to not have cancer!!
Wednesday, November 30, 2011
Avoidance
So, I haven't blogged in a while. Which is a good thing, because I wasn't allowing my risk to take over my thoughts and my life.
Then I discovered my ex, THE ex's, wife (whom I adore) was diagnosed with BC AND is High Risk only to further learn she is BRCA+. Talk about close to home. Then I became curious:
Then I received my pretty pink postcard letting me know they're scheduling January. And I still haven't called. Why? Because I'm scared. Because this shit never ends. Because every once in a while it feels better to put my head in a hole and act like I know nothing. But her response echoes my reasoning for testing even if my risk is lower:
Then I discovered my ex, THE ex's, wife (whom I adore) was diagnosed with BC AND is High Risk only to further learn she is BRCA+. Talk about close to home. Then I became curious:
- is she on as strict of a surveillance regimen as I am?
- did her doctors inform her of her options?
- did they know the severity of the gene?
Then I received my pretty pink postcard letting me know they're scheduling January. And I still haven't called. Why? Because I'm scared. Because this shit never ends. Because every once in a while it feels better to put my head in a hole and act like I know nothing. But her response echoes my reasoning for testing even if my risk is lower:
Knowledge is power and as scary as it is being in the driver seat beats being taken down the road by cancer.
Monday, June 20, 2011
Update: Surveillance-versary!
So, I'm a big fat loser. My surveillance-versary was June 10th! I guess in the midst of not obsessing over my high-risk, I stopped thinking a little too much about it!
Here's the other part I realized: I haven't met a single goal I laid out for myself since my initial meeting with Heather. Not a one. I haven't lost weight. I haven't stopped eating red meat. I didn't start taking vitamins. I didn't change my diet. I didn't drink less . . . well, let's not get ahead of ourselves here, I never did promise that one!
So at the risk of being accused of having a defeatist attitude (again) here is what I have accomplished:
1. I had one Mammogram
2. I had one MRI.
3. I had one Biopsy.
4. I performed at least one self breast exam each month (probably 2 realistically)
6. I tested for the BRCA gene
*these are important because early detection saves lives
7. I told my story.
8. I started going to local FORCE meetings.
9. I met other young, high risk women by telling my story.
10. I finally walked in a breast cancer walk that I raised money for
11. I tried to reach out to my extended family about our risk
12. I had researched enough and learned enough to help my sister begin her journey.
*these are important because many women who are high risk do not know it, or do not know how to proceed
13. I quit smoking (I hope, it's only been a month so I'm afraid to brag).
14. I limited my weekly red meat intake, for the most part:). Hey, I'm a sucker for a cheeseburger!
15. I joined a gym and partake on occasion.
and most importantly . . .
16. I DON'T HAVE BREAST CANCER!
Here's to an even more successful year 2!
Here's the other part I realized: I haven't met a single goal I laid out for myself since my initial meeting with Heather. Not a one. I haven't lost weight. I haven't stopped eating red meat. I didn't start taking vitamins. I didn't change my diet. I didn't drink less . . . well, let's not get ahead of ourselves here, I never did promise that one!
So at the risk of being accused of having a defeatist attitude (again) here is what I have accomplished:
1. I had one Mammogram
2. I had one MRI.
3. I had one Biopsy.
4. I performed at least one self breast exam each month (probably 2 realistically)
6. I tested for the BRCA gene
*these are important because early detection saves lives
7. I told my story.
8. I started going to local FORCE meetings.
9. I met other young, high risk women by telling my story.
10. I finally walked in a breast cancer walk that I raised money for
11. I tried to reach out to my extended family about our risk
12. I had researched enough and learned enough to help my sister begin her journey.
*these are important because many women who are high risk do not know it, or do not know how to proceed
13. I quit smoking (I hope, it's only been a month so I'm afraid to brag).
14. I limited my weekly red meat intake, for the most part:). Hey, I'm a sucker for a cheeseburger!
15. I joined a gym and partake on occasion.
and most importantly . . .
16. I DON'T HAVE BREAST CANCER!
Here's to an even more successful year 2!
Saturday, June 18, 2011
It's my Surveillance-versary!
So, I just realized, it's nearly July. July to many people is Independence Day, summer vacation, barbeque's, camping, 90 degree weather, boating, ridiculous air conditioning bills. To me July is my annual mammogram.
My annual mammogram also marks the completion of the first year in my life as a high risk woman. So I survived year one. With me I take at least 12 self breast exams, an uninformed negative test result, one tiny scar on my right boob, a lead marker near said scar, nearly $1,5000 in related bills and enough tears shed to flood the entire Metropolitan area.
And, because my first MRI (aka, January) came back with an area of suspicion that needed to be biopsied, I need to run the MRI again. Hopefully on the same day.
The average person may not think this deal sounds so bad; 2 tests a year, 6 months apart and a doctors office visit in between. What the average person doesn't realize is I finally feel like I got my head back on straight again. I don't think about my status weekly, daily, hourly, any longer. I wasn't researching everything boob related. I stopped dreaming up my eventual PBM or RX. I stopped practicing the speech I would have to give my friends, family and co-workers.
But now. Now that July is staring me straight on, I feel the beginning pangs of dread, of terror coming back. They get caught in my throat late at night. They subconsciously make my hands linger longer over my breasts suspicious of every change. They haunt me. They whisper to me. They follow me. It's a disease you can't see, that dread. And it's back, just like it promised. Six months later.
My annual mammogram also marks the completion of the first year in my life as a high risk woman. So I survived year one. With me I take at least 12 self breast exams, an uninformed negative test result, one tiny scar on my right boob, a lead marker near said scar, nearly $1,5000 in related bills and enough tears shed to flood the entire Metropolitan area.
And, because my first MRI (aka, January) came back with an area of suspicion that needed to be biopsied, I need to run the MRI again. Hopefully on the same day.
The average person may not think this deal sounds so bad; 2 tests a year, 6 months apart and a doctors office visit in between. What the average person doesn't realize is I finally feel like I got my head back on straight again. I don't think about my status weekly, daily, hourly, any longer. I wasn't researching everything boob related. I stopped dreaming up my eventual PBM or RX. I stopped practicing the speech I would have to give my friends, family and co-workers.
But now. Now that July is staring me straight on, I feel the beginning pangs of dread, of terror coming back. They get caught in my throat late at night. They subconsciously make my hands linger longer over my breasts suspicious of every change. They haunt me. They whisper to me. They follow me. It's a disease you can't see, that dread. And it's back, just like it promised. Six months later.
Friday, April 15, 2011
Being on the low end of high risk
Sometimes I really feel like I don't belong. And before you reassure me that I'm a part of the high risk community, hear me out (because this isn't that post where I say I feel fat because I want everyone to reassure me I'm skinny and beautiful).
I attended my first FORCE meeting locally. And it was lovely. The women were lovely. The conversation and exchange of ideas was lovely. Aside from all of us facing cancer head on, it was lovely. I was the only(known) uninformed negative there. With the exception of one woman preparing to be tested, the rest of the women were positive and either completed surgeries, were scheduled for surgeries or were preparing for surgery. Now, I know surgery isn't for me, right now. The CGC (who was there and who also did my test) said it best:
But sometimes it's just downright lonely. Women who have tested positive for the gene forget what it's like to be in that unknown but surveying stage. And women who aren't high risk aren't being screened like I am. Hell, at my age, the only screening my peers receive is at their Ob/Gyn appointment. Sometimes I feel like the low end of the high risk community is a silent voice, a forgotten battle because most of the women in this recognized community are running a sprint, and well, us uninformed negatives are in it for the marathon.
I attended my first FORCE meeting locally. And it was lovely. The women were lovely. The conversation and exchange of ideas was lovely. Aside from all of us facing cancer head on, it was lovely. I was the only(known) uninformed negative there. With the exception of one woman preparing to be tested, the rest of the women were positive and either completed surgeries, were scheduled for surgeries or were preparing for surgery. Now, I know surgery isn't for me, right now. The CGC (who was there and who also did my test) said it best:
The difference between 25% and 85% risk isn't the path we take, it's how much time we assume we have to move along that path.I've realized that being negative is a blessing in many ways. My family history wasn't as significant as that of the other women in the room, and I have time (cross your fingers, knock on wood, and whatever other heebie jeebie stuff you do for good luck) to make decisions. I'm taking a proactive approach to my cancer screening and I'm doing everything right. And I'm not complaining, well not usually. I'm grateful to be of todays generation and not my grandmothers and I'm grateful for all of my Previvor Sisters.
But sometimes it's just downright lonely. Women who have tested positive for the gene forget what it's like to be in that unknown but surveying stage. And women who aren't high risk aren't being screened like I am. Hell, at my age, the only screening my peers receive is at their Ob/Gyn appointment. Sometimes I feel like the low end of the high risk community is a silent voice, a forgotten battle because most of the women in this recognized community are running a sprint, and well, us uninformed negatives are in it for the marathon.
Wednesday, January 26, 2011
Superwoman=Previvor
Alicia Keys sings the line so beautifully:
Truer words couldn't be spoken about women who wear their scars on their chests, proof that they too are Superwomen. Daily, I look down at the pysical remains of my biopsy. One straw-sized healing incinsion (soon to be scar) and a half dollar sized bruise. Had either of these appeared anywhere else on my body, I probably would have never noticed, and if I had I would have no idea how I did that (I'm not exactly graceful). But these two circles, these two tiny spots stare back at me, daily. A daily reminder of Biopsy One.
These two little spots, markers, alterations in my physical being change the way I see myself. They change the way I feel about myself. How will I see myself 5 years from now, 10, 20? How many spots, markers alterations will I have then? How will I feel about myself then?
They make me wonder, how many biopsy holes will I acquire in a lifetime? If I make it through this life cancer free, how many tokens of surveillance will be left behind? How different will my chest look on my last day even if I never have cancer, which is of course the best case scenario. I contemplate buying a snug white shirt, and placing some sort of marker on my biopsy spot and recording my history externally like the pathologists mark my history internally. A Previvor Souvenir if you will.
You see, that's why Previvors have a term, have a community, why our prevention choices don't matter in the long run (surveillance vs mastectomy). We make not be sick, but we do have the scars to prove it.
'Cause I'm a Superwoman, yes I am, yes she is, even when I'm a mess, I still put on a vest, with an S on my chest, oh yes, I'm a Superwoman.'
These two little spots, markers, alterations in my physical being change the way I see myself. They change the way I feel about myself. How will I see myself 5 years from now, 10, 20? How many spots, markers alterations will I have then? How will I feel about myself then?
They make me wonder, how many biopsy holes will I acquire in a lifetime? If I make it through this life cancer free, how many tokens of surveillance will be left behind? How different will my chest look on my last day even if I never have cancer, which is of course the best case scenario. I contemplate buying a snug white shirt, and placing some sort of marker on my biopsy spot and recording my history externally like the pathologists mark my history internally. A Previvor Souvenir if you will.
You see, that's why Previvors have a term, have a community, why our prevention choices don't matter in the long run (surveillance vs mastectomy). We make not be sick, but we do have the scars to prove it.
Thursday, January 20, 2011
Benign: My New Favorite Word
Heather called me today at 9:15am (she really needs to stop calling at the same time she called with bad news, it scares me). She left a message this time though saying she had good news: woohoo! After a bit of phone tag, she explained that my preliminary results all say the tissue was benign. Because this is just the prelim report, we have to wait for Radiology to confirm they tested the right tissue, and determine whether or not I will require some type of follow-up.
She will share more with me later, however, I know the tissue was hylanized fibrosis adenosis tissue. It was not DCIS or invasive! More woohooing here! However, I have no idea what I just said really either:).
Here is what I have figured out:
Hylanized: gassy homogeneous material within a cell
Fibrosis: abnormal tissue as a result of inflammation
Adenosis: abnormal development of glandular tissue
Now, lets see how well Google passes when I find out what the heck is really going on. Tonight in celebration, I will attempt to sleep on my sides, bruises permitting of course.
She will share more with me later, however, I know the tissue was hylanized fibrosis adenosis tissue. It was not DCIS or invasive! More woohooing here! However, I have no idea what I just said really either:).
Here is what I have figured out:
Hylanized: gassy homogeneous material within a cell
Fibrosis: abnormal tissue as a result of inflammation
Adenosis: abnormal development of glandular tissue
Now, lets see how well Google passes when I find out what the heck is really going on. Tonight in celebration, I will attempt to sleep on my sides, bruises permitting of course.
Monday, January 17, 2011
Let me tell you a little story called "Brr"
Once upon a time I had a friend. Said friend very quickly became a best friend. Sadly, for reasons totally unimportant to this blog, said friend and I haven't spoken in months. Until today, when he wished me luck on my biopsy tomorrow because another friend told him about it. I'm hurt, angry, and betrayed.
But I realize that I'm hurt, angry and betrayed because clearly, the tattletale has no idea what I'm going through. I mean of course I'm nervous about crawling back into the tube, I'm nervous they won't use enough local to numb my full boob, I'm nervous about a needle being poked into the 12 o'clock position of my right breast and ABSOLUTELY I'm nervous about what the tissue sample they draw will say about me.
But best case scenario in this situation is that the tissue is fine, and in 3 months I have a clinical, and then in 3 months I have a mammogram, and then a clinical, and then an MRI. Tomorrow isn't just one test for cancer. It's not just one biopsy. It's one of hundreds of tests for cancer that I'll endure. It's one of probably many biopsies.
Worst case scenario is its cancer. And I face my ghost face to face. But either way I don't rid this. Truthfully, tomorrow is the just another ordinary day in the life of a high risk breast cancer patient.
It hurts because this isn't one day. This is my life.
But I realize that I'm hurt, angry and betrayed because clearly, the tattletale has no idea what I'm going through. I mean of course I'm nervous about crawling back into the tube, I'm nervous they won't use enough local to numb my full boob, I'm nervous about a needle being poked into the 12 o'clock position of my right breast and ABSOLUTELY I'm nervous about what the tissue sample they draw will say about me.
But best case scenario in this situation is that the tissue is fine, and in 3 months I have a clinical, and then in 3 months I have a mammogram, and then a clinical, and then an MRI. Tomorrow isn't just one test for cancer. It's not just one biopsy. It's one of hundreds of tests for cancer that I'll endure. It's one of probably many biopsies.
Worst case scenario is its cancer. And I face my ghost face to face. But either way I don't rid this. Truthfully, tomorrow is the just another ordinary day in the life of a high risk breast cancer patient.
It hurts because this isn't one day. This is my life.
Friday, January 14, 2011
Where's the what to expect when you're not expecting handbook?
And no, I'm not talking about babies.
Yesterday was my MRI. Hated it! Although the technicians were gems and deserve Jennifer Anistons salary, in my opinion. They weren't kidding about the IV making your mouth taste like metal - blech! And if anyone wants to shoot over any tips on how the hell to sit up after you're done without ripping the IV out of your arm, I would appreciate it.
When discussing the results with my roommate, I told her I expected a letter in a couple of weeks like I did with the Mammogram stating all was clear. That's when the unexpected happened. Heather called at 9:15 this morning to discuss the results and offer recommendations. Duh, duh, duh. . . . .
So clearly, I knew all wasn't honky-dorry. I just spoke with her and there is a 7 mm linear mass area of enhancement at the 12 o'clock position on my right breast. Ain't that a bitch. There's a spot in my right boob that I will obsess over for the next week and it's too damn small for me to even feel. Well, I have an appointment next Tuesday for a wire-guided MRI biopsy. Yup, back in the tube I go. I'm going to go study up on my biopsy and I'll share anything I learn with ya.
Yesterday was my MRI. Hated it! Although the technicians were gems and deserve Jennifer Anistons salary, in my opinion. They weren't kidding about the IV making your mouth taste like metal - blech! And if anyone wants to shoot over any tips on how the hell to sit up after you're done without ripping the IV out of your arm, I would appreciate it.
When discussing the results with my roommate, I told her I expected a letter in a couple of weeks like I did with the Mammogram stating all was clear. That's when the unexpected happened. Heather called at 9:15 this morning to discuss the results and offer recommendations. Duh, duh, duh. . . . .
So clearly, I knew all wasn't honky-dorry. I just spoke with her and there is a 7 mm linear mass area of enhancement at the 12 o'clock position on my right breast. Ain't that a bitch. There's a spot in my right boob that I will obsess over for the next week and it's too damn small for me to even feel. Well, I have an appointment next Tuesday for a wire-guided MRI biopsy. Yup, back in the tube I go. I'm going to go study up on my biopsy and I'll share anything I learn with ya.
Thursday, January 13, 2011
MRI Day . . . Glad they're not testing my nerves!
In a couple of short hours, I will be lying face down, girls hanging, in a loud banging tube. There will be a tinted IV in my arm, highlighting my blood stream and more pictures of my beasts will be taken. If breast cancer previvors, patients, and survivors were paid per picture, we'd make Jenna Jameson look poor!
And today I'm really nervous! I can't come up with a code name for this test; that's how I know I'm really nervous- I can't even make fun of it. I call my mammo's the Monster Mash, my clinicals Tuning in to Tokyo, but can't find anything witty for this one.
Deep down I know I'm fine. I SBE every month, my mammo came back clear, my clinical exam last month was all clear. But at the same time, if on the off chance something wasn't fine, if there was a tiny spot of trouble, this would be the exam that would most likely find it. I keep telling myself, I'll be fine, but if I was really fine, I wouldn't be doing this at 30 right?
PS - my dear friend with Cervical Cancer has her surgery to remove the cancer, and some of her cervix tomorrow morning. I ask of you to do whatever spiritually moves you to ask for health, healing, and fertility for her. Thanks xoxox
And today I'm really nervous! I can't come up with a code name for this test; that's how I know I'm really nervous- I can't even make fun of it. I call my mammo's the Monster Mash, my clinicals Tuning in to Tokyo, but can't find anything witty for this one.
Deep down I know I'm fine. I SBE every month, my mammo came back clear, my clinical exam last month was all clear. But at the same time, if on the off chance something wasn't fine, if there was a tiny spot of trouble, this would be the exam that would most likely find it. I keep telling myself, I'll be fine, but if I was really fine, I wouldn't be doing this at 30 right?
PS - my dear friend with Cervical Cancer has her surgery to remove the cancer, and some of her cervix tomorrow morning. I ask of you to do whatever spiritually moves you to ask for health, healing, and fertility for her. Thanks xoxox
Tuesday, January 4, 2011
Breast Cancer 3 Day
I have raised money for The 3 Day twice, the Race for the Cure once and have never been able to walk for one reason or another. Therefore, I am super excited to announce that I will be flying down to Tampa Halloween weekend to walk with my sister.
While Breast Cancer has always been close to our hearts (get it?! LOL), this year it has been us in the doctors chair. While unlike our grandmothers, we've been lucky thus far, it just seems right to go for it in 2011 and even better to do it with my sister and best friend.
But we can't register until we find a team name. I know some people think it trivializes the cancer, and I empathize with any survivor who feels that way, but I disagree. There is nothing trivial about raising $2,300, flying states away, sleeping in tents and walking 60 miles, after a year of clinical exams, mammograms, and MRI's to help hopefully keep us from walking in the shoes of our predecessor.
So help! Boob puns are encouraged! Here is what we have so far:
Gaga for Tata's
Underwire Previvors
Grammies Mammies
Baby Got Racks
Genetically Twisted
Rack Stars
I was hoping to come up with a pun on SBE but can't! Darnit!
(I did poach a couple from other cities team names, guilty as charged!)
While Breast Cancer has always been close to our hearts (get it?! LOL), this year it has been us in the doctors chair. While unlike our grandmothers, we've been lucky thus far, it just seems right to go for it in 2011 and even better to do it with my sister and best friend.
But we can't register until we find a team name. I know some people think it trivializes the cancer, and I empathize with any survivor who feels that way, but I disagree. There is nothing trivial about raising $2,300, flying states away, sleeping in tents and walking 60 miles, after a year of clinical exams, mammograms, and MRI's to help hopefully keep us from walking in the shoes of our predecessor.
So help! Boob puns are encouraged! Here is what we have so far:
Gaga for Tata's
Underwire Previvors
Grammies Mammies
Baby Got Racks
Genetically Twisted
Rack Stars
I was hoping to come up with a pun on SBE but can't! Darnit!
(I did poach a couple from other cities team names, guilty as charged!)
Wednesday, December 22, 2010
Turning the Page; Chapter Two
I'm back! And what a whirlwind the ride has been! I woke up ready and armed for my first of many annual mammograms to come, prepared to do what's best preventively for my health. I had no idea what was awaiting on the other side of the Monster Mash (my nickname for the Mammography machine).
Well, three clinical breast exams, a DNA test, thousands of hours of research, a dozen anonymous web-friends later, and more scientific knowledge than my K-Bachelors degree education provided me and I finally feel like I'm at the next chapter. Let's call it: Surveillance: The next stage in my fight to prevent Breast Cancer.
I met with Heather the NP today and all's clear. I have some seriously dense (and a bit sore) tissue near on the outer parts of my breasts (let's say the 3 and 9 o clock) but it's nothing to be concerned about. I'll have my first MRI next month as scheduled and hopefully next time I'm back in my NP's office it'll be October and I'll be thinner (Goal: 12 lbs before summer).
Thanks for riding the ride with me. Hopefully it's smoother on out from here.
Well, three clinical breast exams, a DNA test, thousands of hours of research, a dozen anonymous web-friends later, and more scientific knowledge than my K-Bachelors degree education provided me and I finally feel like I'm at the next chapter. Let's call it: Surveillance: The next stage in my fight to prevent Breast Cancer.
I met with Heather the NP today and all's clear. I have some seriously dense (and a bit sore) tissue near on the outer parts of my breasts (let's say the 3 and 9 o clock) but it's nothing to be concerned about. I'll have my first MRI next month as scheduled and hopefully next time I'm back in my NP's office it'll be October and I'll be thinner (Goal: 12 lbs before summer).
Thanks for riding the ride with me. Hopefully it's smoother on out from here.
Wednesday, October 27, 2010
I get to keep my boobs!
Today was the big day, aka Genetic Test Results day and there is No Mutation Detected!
Anywho, so because my Aunt has yet to test for the mutation, I'm technically an uninformed negative. Because of the family history, until my Aunt tests also for the BRCA mutations we don't know what the cause of the family cancer is. If my Aunt tests negative, there is a likelihood, there is something undiscovered that created the pattern. If she tests positive, there is a mutation and I am just not a carrier.
So the good news here is that my risk has dropped! I was a 32.92% risk pre-testing (that calculated my risk for having a mutation and my other risk factors). Now I am about a 24-25% risk (it'd be 23-24% if I didn't have big, full boobies). So I no longer have a 1 in 3 chance, now it's only 1 in 5 (yes, if you are normal it's 1 in 8).
What this means for me is all state of mind really. I still need an MRI in December, and an annual Mammo, and I'm still enrolled in the high risk program. I'm not out of other treatment option woods yet either - but unless things change, I can keep my boobs:). If you have never met me, you won't have any idea the amount of relief this gives me. I really wanted to keep em all along!
Its funny, I really thought finding no mutation would be anti-climatic. You know, the buildup of stress and tension and anxiety and then nothing really changes. But the sense of relief today is so high! I'll save the anxiety for my MRI in December:).
That's some girlfriends and I jumping because we're silly -
we can say for this blogs purpose we're jumping for joy!
we can say for this blogs purpose we're jumping for joy!
Anywho, so because my Aunt has yet to test for the mutation, I'm technically an uninformed negative. Because of the family history, until my Aunt tests also for the BRCA mutations we don't know what the cause of the family cancer is. If my Aunt tests negative, there is a likelihood, there is something undiscovered that created the pattern. If she tests positive, there is a mutation and I am just not a carrier.
So the good news here is that my risk has dropped! I was a 32.92% risk pre-testing (that calculated my risk for having a mutation and my other risk factors). Now I am about a 24-25% risk (it'd be 23-24% if I didn't have big, full boobies). So I no longer have a 1 in 3 chance, now it's only 1 in 5 (yes, if you are normal it's 1 in 8).
What this means for me is all state of mind really. I still need an MRI in December, and an annual Mammo, and I'm still enrolled in the high risk program. I'm not out of other treatment option woods yet either - but unless things change, I can keep my boobs:). If you have never met me, you won't have any idea the amount of relief this gives me. I really wanted to keep em all along!
Its funny, I really thought finding no mutation would be anti-climatic. You know, the buildup of stress and tension and anxiety and then nothing really changes. But the sense of relief today is so high! I'll save the anxiety for my MRI in December:).
Monday, October 4, 2010
Lumps and Bumps: Is it all in my head?
My facbook status today reads: October is Breast Cancer Awareness Month: Save mans real best friend and perform a monthly self breast exam!
And that's because last night I did. I have been pretty vigilant at SBE's for a long time now. I noticed a change, or a lump if you will, two years ago, reported it to my doctor, had an ultrasound, the technician treated me like I was too young to be concerned, and all in all the results came back negative. This experience compared to my first mammogram has shown me how important your medical provider is. You must be your own advocate - or change doctors until you find one that fits with your priorities and needs. The ultrasound tech two years ago commented on my "breast density" and when I inquired further with her, she told me it really wasn't a big deal. This was a year following the release of a study in the New England Journal of Medicine that confirms high tissue density does lead to higher rates of breast cancer! Needless to say, I won't be returning to that hospital for my breast care - ever.
So last night again, I noticed a change in my tissue. I can't tell if it's a lump, or a bump or what. I can feel a definite indent that is not present elsewhere on either breast. I will be emailing my Nurse Practitioner to see how she feels I should follow up. I am still awaiting my BRCA test results, and will schedule a MRI after those are received. But I can't help but wonder, did I notice this change last month and not take it as seriously? Am I creating this in my mind because this is all I currently think about? At what point am I no longer re-acting to the changes in my life and being truly proactive? Am I seeing things that aren't there because I'm more sensitive? I don't know. We'll see what Heather says.
And that's because last night I did. I have been pretty vigilant at SBE's for a long time now. I noticed a change, or a lump if you will, two years ago, reported it to my doctor, had an ultrasound, the technician treated me like I was too young to be concerned, and all in all the results came back negative. This experience compared to my first mammogram has shown me how important your medical provider is. You must be your own advocate - or change doctors until you find one that fits with your priorities and needs. The ultrasound tech two years ago commented on my "breast density" and when I inquired further with her, she told me it really wasn't a big deal. This was a year following the release of a study in the New England Journal of Medicine that confirms high tissue density does lead to higher rates of breast cancer! Needless to say, I won't be returning to that hospital for my breast care - ever.
So last night again, I noticed a change in my tissue. I can't tell if it's a lump, or a bump or what. I can feel a definite indent that is not present elsewhere on either breast. I will be emailing my Nurse Practitioner to see how she feels I should follow up. I am still awaiting my BRCA test results, and will schedule a MRI after those are received. But I can't help but wonder, did I notice this change last month and not take it as seriously? Am I creating this in my mind because this is all I currently think about? At what point am I no longer re-acting to the changes in my life and being truly proactive? Am I seeing things that aren't there because I'm more sensitive? I don't know. We'll see what Heather says.
Monday, September 27, 2010
Frick and Frack; BRAC and BART
"Frick and Frack" has become an English slang term used in two ways. One is to refer to two people so closely associated as to be indistinguishable; the other way is as a term of derision for any two people, on par with calling one person a "Bozo" or three people "Stooges".[1]
BRACAnalysis is the typical compBRAC (comprehensive BRCA analysis) test for people being tested without a known mutation in their family. It's the test I knew I was having. It costs approximately $3,400 at Myriad Labs, who is currently the only lab legally able in the USA to provide BRCA testing. The comprehensive BRACAnalysis scans your DNA (Chromosome 17 and 13) for the 5 most largest and most common gene mutations.
You can imagine my surprise when I spoke with Myriad Labs today and learned that two tests have been ordered to thoroughly exam the threads that make me uniquely me: BRAC and BART.
BART or the BRACAnalysis Rearrangement Test as it is officially called, is a second genetic assessment for some high risk women who's BRACAnalysis comes back negative. BART looks for additional arrangements of my DNA within those two mutations that may also lead to an increased risk for BC. In order to qualify for a date with BART one must:
If you are considering the Comprehensive BRACAnalysis please keep in mind that BART, while extremely similar to her sister BRAC, is a different test that a. comes after a negative result in BRAC, and b. costs additionally. Based upon my personal out of pocket for the second test, I'm assuming in the $600 range.
[1] Source: Wikipedia
[2] Source: Facing Our Risk for Cancer Empowered (FORCE)
BRACAnalysis is the typical compBRAC (comprehensive BRCA analysis) test for people being tested without a known mutation in their family. It's the test I knew I was having. It costs approximately $3,400 at Myriad Labs, who is currently the only lab legally able in the USA to provide BRCA testing. The comprehensive BRACAnalysis scans your DNA (Chromosome 17 and 13) for the 5 most largest and most common gene mutations.
You can imagine my surprise when I spoke with Myriad Labs today and learned that two tests have been ordered to thoroughly exam the threads that make me uniquely me: BRAC and BART.
BART or the BRACAnalysis Rearrangement Test as it is officially called, is a second genetic assessment for some high risk women who's BRACAnalysis comes back negative. BART looks for additional arrangements of my DNA within those two mutations that may also lead to an increased risk for BC. In order to qualify for a date with BART one must:
1) {come} from families with an inherited pattern of cancer but no identified mutation, and 2) whose family history meets certain criteria, and 3) whose initial testing produced a result of either “no mutation detected,” “genetic variant of uncertain significance,” or “genetic variant, favor polymorphism.” [2]
If you are considering the Comprehensive BRACAnalysis please keep in mind that BART, while extremely similar to her sister BRAC, is a different test that a. comes after a negative result in BRAC, and b. costs additionally. Based upon my personal out of pocket for the second test, I'm assuming in the $600 range.
[1] Source: Wikipedia
[2] Source: Facing Our Risk for Cancer Empowered (FORCE)
Thursday, September 23, 2010
Post Testing: The "What if" factor is gone!
My appointment with the geneticist went great and I feel great! I have decided to go forward with the test. In a perfect world, my surviving relative would be tested, and if she were BRCA +, my father would be tested, and if he was also BRCA +, my sis and I would test. In reality, my surviving relative and I don't speak, my father is retired, and I am still at risk.
I had my mind made up for the most part before the appointment. It was important to me to feel like I am doing something, anything, to fight my predisposition to cancer and to be proactive in staying cancer free. By testing, if my results are an uninformed negative, my surveillance plan stays the same - the exact same as it is had I chosen not the test. But I have gotten rid of the "what if" I tested factor. I am taking a step, a step that I can control.
I also plan on using this, regardless of my results, to hopefully inform my cousins who may also be at risk. I intend to reach out to them either way and share my results and why testing is important. If there is a mutation in my family, even if I don't have it, it needs to be found so everyone is aware of their personal risk.
I also realized, and it was reinforced during my appointment, that I'm actually not afraid of being BRCA +. I mean, don't get me wrong, I'd much rather be back at the point in my life where cancer wasn't something I worried about, but I am much more afraid of having an increased risk and not knowing. If I know I have an elevated risk, like that with BRCA+ I have a calculated, identified risk with multiple (although not preferable) treatment options, for lack of a better word.
I'm also glad I did as much research as I did going in. I felt confident in the process, my potential results, and how I would feel about the outcomes. Now, for some people, research before the decision (the shirt before the shirt as they would say on Jersey Shore) may seem excessive and cause more concern. For me, it was calming. I believe that knowledge is power and the more I know, the better I feel. Make sure, if you are approaching testing, you know how you typically problem solve and go about it the same way. I'm glad I did.
I'm not sure what result I am hoping for, but I know I made the right decision for me and knew I had to test when the GC said to me: "You know, some people find a certain amount of bliss in ignorance." I immediately responded: "I am not that person." This is the best decision for me.
I had my mind made up for the most part before the appointment. It was important to me to feel like I am doing something, anything, to fight my predisposition to cancer and to be proactive in staying cancer free. By testing, if my results are an uninformed negative, my surveillance plan stays the same - the exact same as it is had I chosen not the test. But I have gotten rid of the "what if" I tested factor. I am taking a step, a step that I can control.
I also plan on using this, regardless of my results, to hopefully inform my cousins who may also be at risk. I intend to reach out to them either way and share my results and why testing is important. If there is a mutation in my family, even if I don't have it, it needs to be found so everyone is aware of their personal risk.
I also realized, and it was reinforced during my appointment, that I'm actually not afraid of being BRCA +. I mean, don't get me wrong, I'd much rather be back at the point in my life where cancer wasn't something I worried about, but I am much more afraid of having an increased risk and not knowing. If I know I have an elevated risk, like that with BRCA+ I have a calculated, identified risk with multiple (although not preferable) treatment options, for lack of a better word.
I'm also glad I did as much research as I did going in. I felt confident in the process, my potential results, and how I would feel about the outcomes. Now, for some people, research before the decision (the shirt before the shirt as they would say on Jersey Shore) may seem excessive and cause more concern. For me, it was calming. I believe that knowledge is power and the more I know, the better I feel. Make sure, if you are approaching testing, you know how you typically problem solve and go about it the same way. I'm glad I did.
I'm not sure what result I am hoping for, but I know I made the right decision for me and knew I had to test when the GC said to me: "You know, some people find a certain amount of bliss in ignorance." I immediately responded: "I am not that person." This is the best decision for me.
Tuesday, September 21, 2010
36 Hours and Counting
I'm 36 hours away from my appointment with the genetic counselor. I've been reading and preparing for weeks and I can't come up with a single question to ask and I feel so unprepared. I know I've read and researched a lot, and I mean a lot, since my NP called me on August 7th to recommend I make this appointment, but how do I of all people draw a blank? I'm not a quiet person, especially not as a patient. I am probably on the total opposite side of the spectrum, borderline obnoxious, when it comes to knowing everything, and I mean everything, a doctor is doing. It's my health and body damn it and I will not apologize nor am I ashamed that I am a nosey patient.So, why oh why, am I staring at a blank pad of paper, mind empty?
At the time of scheduling the appointment for the first visit, a second consult appointment will be schedule to review the test results. During the patients initial visit to the clinic, a genetic counselor will include a review of the personal and family medical history, a discussion of the role genes play in the development of cancer, and basic genetic concepts. A personalized risk assessment for hereditary cancer, a description of the genetic testing process, as well as information about cancer risk reduction and prevention strategies are discussed in detail. The family history is carefully assessed and the risk of carrying a mutation is determined and fully discussed.
Most health insurance plans pay for these tests, but not all do. We will help with the preauthorization process and determine the level of insurance coverage for testing. If you have an HMO insurance, it is your responsibility to obtain a referral for genetic testing prior to our ability to check with your insurance.
An appointment with the Cancer Genetics Program consists of a consult with both a genetic counselor and physician, and possibly a blood draw, if testing is pursued. There is no need to fast prior to the blood draw. The initial consult lasts around an hour to an hour and a half, depending on the questions that arise. Most, but not all, insurances cover the cost of this office visit.
Test results are available in two to five weeks (depending on the test(s) ordered). Results will be discussed in details at the follow up appointment (we give test results in person, and not over the telephone). We then have a thorough discussion about future management recommendations and risk reduction strategies, as well as family dynamics.
Ah well, here's to October 28th - ish!
Saturday, September 18, 2010
Figuring it out
I've been talking this whole 'bidness' through with a friend (thanks) and have stumbled upon some Aha! moments that I want to share here. Forgive them, because they've been cut and pasted from emails :)
About the test and my personal risk: I am being tested for a gene mutation that could raise my risk up to 87%. It is not a gene that causes breast cancer, it is a gene mutation that prevents my bodies natural resistance to tumor growth in my breast tissue. There are unrecognized gene mutations that do the same thing as BRCA 1 or 2 that have been identified and have not been identified that also raise risk an unknown amount. That is why an overall family history of cancer is important to a geneticist to study. BC is also linked to ovarian, prostate and colon cancer. I have prostate and colon cancer family history as well.
It's not my risk that totally concerns me. Clearly, I got my first mammo at 30 because of my risk. Here's what unsettling, the reality of said risk. Whether my risk is 33% or 67% or 87% (highest risk % available) my "surveillance" options are the same because risk is so difficult to manage. Couple that with being 18 months from the age of cancer onset in my family and it creates a scary situation. If my Grandma had a mutation, my dad had a 50% chance of also getting it. If he did, I have a 50% chance of getting it from him. Right now, based on that alone I have a 25% chance of gaining the mutation - which is unrelated to my overall 33% risk assessment.
I'm not afraid I'm going to get BC and die tomorrow: Truth be told, I have (in the back of my mind) always assumed I would get BC at some point in my life. Am I afraid of death, as a general idea? Yes, absolutely! I'm way too cool to die, clearly:). Will I die eventually, yes, obviously. But let me make this clear, my frustration, emotions, nerves right now are maybe 2% because I think I'm going to get BC and die tomorrow, and 98% for the road there.
Surveillance: While it's great that science allows us the opportunity to asses risk and catch cancerous growth quicker than ever before, it still has a long way to go when treating BC specifically. Surveillance is the same whether my risk is 33% or 87%. And prevention options are surveillance, early menopause, or a mastectomy. The only difference, is someone with an 87% risk would also likely go through preventive chemotherapy. Yup, that's right preventive chemo, Tamoxifen.
As you age, you expect to see more doctors, have more appointments, begin to worry about cancer etc. Most women begin mammograms at 40 and everyone begins checking (or should) for colon cancer at age 50. I'm only 30! I thought at 30 I would have my usual annual exam plus a mammogram annually. Now, I have my annual, then a mammogram 3 months later, than I meet with my NP for a clinical exam, then an MRI 3 months later, and on it goes. It's a lot for a seemingly healthy 30 year old to go through. It's a big change. Most women my age don't have to actively worry and fight cancer. And while I've known for about a month now that I do, it's been one month out of 30 years!
Why I'm doing so much research now instead of waiting for my results:
I didn't research this extensively because I'm a worry wart. I researched this because if I am positive for a mutation or have an elevated risk, I want to know what my answer to that problem is before it's my problem. If my immediate response that day is: cut off the girls, I want to make sure I thought that was an appropriate response when I doubted I would have to make that decision. I also want to know what to expect either way.
And, I should say, that because of my recent research I have uncovered a whole community of women whose strength, and diligence, passion and compassion has inspired me and whose stories can be used as lessons across all problems in our lives.
About the test and my personal risk: I am being tested for a gene mutation that could raise my risk up to 87%. It is not a gene that causes breast cancer, it is a gene mutation that prevents my bodies natural resistance to tumor growth in my breast tissue. There are unrecognized gene mutations that do the same thing as BRCA 1 or 2 that have been identified and have not been identified that also raise risk an unknown amount. That is why an overall family history of cancer is important to a geneticist to study. BC is also linked to ovarian, prostate and colon cancer. I have prostate and colon cancer family history as well.
It's not my risk that totally concerns me. Clearly, I got my first mammo at 30 because of my risk. Here's what unsettling, the reality of said risk. Whether my risk is 33% or 67% or 87% (highest risk % available) my "surveillance" options are the same because risk is so difficult to manage. Couple that with being 18 months from the age of cancer onset in my family and it creates a scary situation. If my Grandma had a mutation, my dad had a 50% chance of also getting it. If he did, I have a 50% chance of getting it from him. Right now, based on that alone I have a 25% chance of gaining the mutation - which is unrelated to my overall 33% risk assessment.
I'm not afraid I'm going to get BC and die tomorrow: Truth be told, I have (in the back of my mind) always assumed I would get BC at some point in my life. Am I afraid of death, as a general idea? Yes, absolutely! I'm way too cool to die, clearly:). Will I die eventually, yes, obviously. But let me make this clear, my frustration, emotions, nerves right now are maybe 2% because I think I'm going to get BC and die tomorrow, and 98% for the road there.
Surveillance: While it's great that science allows us the opportunity to asses risk and catch cancerous growth quicker than ever before, it still has a long way to go when treating BC specifically. Surveillance is the same whether my risk is 33% or 87%. And prevention options are surveillance, early menopause, or a mastectomy. The only difference, is someone with an 87% risk would also likely go through preventive chemotherapy. Yup, that's right preventive chemo, Tamoxifen.
As you age, you expect to see more doctors, have more appointments, begin to worry about cancer etc. Most women begin mammograms at 40 and everyone begins checking (or should) for colon cancer at age 50. I'm only 30! I thought at 30 I would have my usual annual exam plus a mammogram annually. Now, I have my annual, then a mammogram 3 months later, than I meet with my NP for a clinical exam, then an MRI 3 months later, and on it goes. It's a lot for a seemingly healthy 30 year old to go through. It's a big change. Most women my age don't have to actively worry and fight cancer. And while I've known for about a month now that I do, it's been one month out of 30 years!
Why I'm doing so much research now instead of waiting for my results:
I didn't research this extensively because I'm a worry wart. I researched this because if I am positive for a mutation or have an elevated risk, I want to know what my answer to that problem is before it's my problem. If my immediate response that day is: cut off the girls, I want to make sure I thought that was an appropriate response when I doubted I would have to make that decision. I also want to know what to expect either way.
And, I should say, that because of my recent research I have uncovered a whole community of women whose strength, and diligence, passion and compassion has inspired me and whose stories can be used as lessons across all problems in our lives.
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