Friday, February 19, 2010

7. beginnings - epic

i am sure some of you have stumbled upon my blog by mistake and are wondering how i could come to a decision such as this: the removal of my breasts.

well first off, i want to make it clear that my breasts ARE NOT healthy.

it all started in the beginning of november 2007. i was just chilling at the computer and for some reason...maybe just a comfort thing - i cupped my left breast and there it was...a lump. and not even a small one. it was the size of a pea.

my heart started to race and i got sweaty. i started searching the internet right away for what it could be. immediately i was struck with the fear that it might be cancer. i think my research that night ultimately brought me to the YSC - Young Survivors Coalition. i joined their forum and started posting my concerns.

i was stuck with the dilemma that i did not have a family doctor at the time. it took me 3 weeks to find a doctor that would except me for "an interview." fortunately during this interview i told the doctor why i was really there and he examined me...and could palpate the mass as well. he wrote me a script for a mammogram and a breast ultrasound (u/s from here on out).

if memory serves me correctly, i went immediately for the mammo and u/s but when i got to the imaging center the girl behind the counter sort of laughed at me and said i was too young for a mammogram. she called up to the doctor and asked if it was necessary for me to have it? i don't know why she persuaded him to say no, but i did not have a mammo that day. i did however have the u/s.

i anxiously waited about 2 weeks to get the radiology report for the u/s. in that time i have found other lumps in both of my breasts. needless to say i was freaking out. the doctor took my concerns seriously...and having learned to advocate for myself from the YSC boards i requested a biopsy. he then made a referral to a breast surgeon (who i will refer to as dr. l).

i waited 2 months to get in to see dr. l. in the mean time i was doing tons of research and i pretty much convinced myself i had breast cancer. this was not completely unwarranted as my mother was diagnosed with breast cancer when she was 35 and died of it when she was 38. upon further investigation, i also found that there were 2 more female breast cancer diagnoses under the age of 60. a great aunt had breast cancer at 60 and fortunately survived after a mastectomy but died of melanoma 15 years later...and a great, great aunt who also had breast cancer and died of it at the age of 44. (but more on family history in another post.)

so...jan. 2008...i meet with dr. l. i was expecting to be going for a biopsy...but was totally let down when he said he wanted to wait till may 2008 to do anything. he wrote me a new script saying that i can, and will have a mammogram in may and that he will also do a follow up u/s for comparative purposes. he also wrote me a script for primrose oil!?!?!

i left feeling completely devastated and worried that i had cancer and that we were NOT going to do anything about it. i felt like i was a failure by not being able to advocate for myself but then spend the next 4 months being pro-active. i got a doctors referral to a genetics counselor and start gathering my family history and retrieving my mothers medical records.

i tried my best to put the "cancer" stuff out of my head and go about regular life. then may 2008 finally came...and it being my first mammogram-i was pretty nervous. i guess i was so nervous that i some how got my appt. date wrong and showed up a week too early. doi! fortunately they took me that day anyways.

and yes...the mammogram experience is brutal...and i think that technician was rougher than most (i have learned since from having other technicians that don't seem to cause me as much pain during mammography). also, i am very small breasted...like so small, i have never come across anyone else who has the same or smaller breasts than me...so i am sure this contributed to the pain factor...

after the mammogram the technician said to me "don't be alarmed if we call you back for more slides in the next few days." and there was the first red flag. then she walked me down to have the u/s. and then the next red flag was the technician spending about 25 minutes u/s-ing my breasts (as opposed to 10 minutes for my first one in nov. 07).

i don't know why...but i sort of felt better for a bit after i left the imaging center. like i had been taken care of and taken seriously. i was actually totally surprised when I DID GET THAT PHONE CALL to come back in for more mammogram images. they also told me on the phone that i should be prepared for the possibility that i could be having a biopsy the same day and to bring a friend.

i was a mess. and it is safe to say from that point on: may 2008-present i have been a mess with this whole breast cancer scariness.

so as i predicted on that day of the extra mammogram slides...there was concern. and they battled with my right breast (not even the breast i had found the initial lump in) to get the proper images. and those images led to another u/s...and that u/s led to a u/s guided core needle biopsy.

and let me just tell you about biopsies just in case you are wondering...they are actually not a big deal. it was a walk in the park compared to being pancaked in the mammogram machine...but either way i was terrified and i did end up with a golf ball sized hematoma...oh and it was 2 days after my birthday on the day i was to have birthday celebrations...The Cure concert...i was still able to go...and guiltily i will admit the hemotoma was probably my own fault cuz i drank that night and thinned my blood causing excess bleeding...but hey...it was my birthday and my first real concert.

so back to the biopsy. afterwards, i had visions of having to go for chemo. losing my hair. losing my breasts. of dying. of my family being devastated. it was awful. and i was a mess at work...and i missed a lot of days...and i lost my job cuz of all of it cuz i was to messed up to even communicate what was going on and how my job could help me. and i had to wait 11 damn days for that pathology report!

but...no cancer! however, numerous things were found that were cause for alarm and elevated my risk factors. first off, i was and am very dense. my breast density is in the highest range of between 75-100% which is translated to a birads 4. secondly, i am fibro-cystic (so bad that i have to sometimes hold my breasts when going down stairs because they are so painful) and so lump infested that i had to take a picture of my breasts and map out the lumps so i could tell what might be new. my breasts are littered with cysts through out...some really tiny, 5 that are about pea sized, and one that is almost the size of a golf ball...and in addition to this golf ball, i can feel additional cysts on top of this ginormous cyst. i am worried what could be hiding behind it too.

and then there are the more serious findings: calcifications and cystic structures that were biopsied were/contained proliferative breast disease: apocrine metaplasia (scroll to comment section) and sclerosing adenoma...and i also have what appears to be a fibroadenoma or blood filled cyst. so to say my breasts are over active is an understatement.

now here is the best part. after learning all this at my follow up appointment with dr. l...he goes through some of the paperwork...and he is like "OH! did you get a call back yet for another biopsy? and i am all "Noooooooo....whhhhhhy?" (fear, fear, fear.) he reads what the sheet says: patient needs to come back for a stereotactic breast biopsy because the site in question was not sampled satisfactorily. (seriously...by this time i think i have completely lost it...well internally/mentally i have...but somehow i manage to keep it together.)

mind you i got a prescription of lorazepam/ativan to get me through and i called my dad to come from 6 hours away so he could take me. and he did...which was really nice...(my dad is being more supportive than i imagined he would be because i know this is very scary for him...and i think his inclination is to try and distance himself from it because it is painful to see his daughter suffer.)

fortunately the second biopsy in june 2008 only found the same findings as the first...but i had to wait another 11 excruciating days...and i had to track the results down myself because dr. l had gone on holidays. i got them straight from radiology.

i would say at that point i started considering prophylactic breast mastectomy. coupled with my risk factors (i will leave the genetics counseling for another post)and family history i feel like i am just a ticking time bomb. and as you can see it has been a year and a half journey since consideration in june 2008 to get me to the point i am today.

and along that journey i have still had scares. u/s in december 2008 for new lumps i found in right breast that turned out to be new cystic structures. mammogram, u/s, and also breast mri in may 2009. in june 2009 i got all of my imaging put on disk for my own records and am able to look at my breasts internally on my home computer...and i can see all the stuff that is going on in them right before my very eyes on my computer screen.

even the other day-monday night...just lying in bed...i felt my left breast and was shocked to feel how prominent some of the cysts are...they feel as if they will poke right through my skin...and this then translated into a nightmare of having breast cancer.

and so, these are the experiences leading up to my decision. there is no way i can express the depth of fear and anxiety i experience through words but i hope this gives you a little bit of understanding. and i also want to share a couple of videos of e.d. hill who has shared a similar journey as mine that has appeared on the view and is documenting her journey as she goes through nipple sparing pbm with expansion, and then to implants:

(if videos don't work you can go directly to the site: http://theview.abc.go.com/category/tags/ed-hills-story)

video

video

video

video

video

2 comments:

  1. It's a hard choice that people like us have to make, no doubt about it. But you are doing a good thing, by trying to help others along in their journey too - and trust me, by sharing your experiences you are helping others. You can and should feel proud about that. :)

    Teri

    ReplyDelete
  2. thanks teri. i wanted to follow in the foot steps of you and others who have so graciously helped me in my journey by blogging about your experience too.

    rach

    ReplyDelete