Wednesday, December 28, 2011


I had a feeling that the results from my ultrasound experience was too good to be true.  I left the hospital on Monday after it thinking that the lumps found on MRI went away; that they were maybe a small cyst that dissolved or something cycle related.  Wrong.

Dr. Colette called today and explained to me that they likely didn't disappear.  Instead, they are just too small to be picked up by ultrasound and in an area that ultrasound isn't as reliable for anyway.  My options now are to do MRI guided biopsy or just wait until surgery time (or move up the surgery date.)

MRI guided biopsy, based solely on what I've googled, doesn't sound particularly enjoyable.  I'll take you with me on my google tour for the night.  According to, "Most women report little or no pain."  It sounds like a typical breast MRI but a device will be used to "gently compress between two compression plates."  I'd like to see if these same (probably male) authors called mammography gentle compression.  "One [compression plate] is marked with a grid structure.  Using computer software, the radiologist measures the position of the lesion with respect to the grid and calculates the position and depth of the needle placement."  They go on to discuss how the area will be numbed and a core needle will remove a small amount of the tissue 3-6 times.  I have three areas of concern, so rinse and repeat for more like 9-18 times.  This could be 2-3 hours of hanging out in superman position on the MRI table.  But we'd know exactly what these abnormal areas are and what we need to do (if anything) about them. 

Waiting until surgery, however, means that we go into it not knowing what will be in there and potentially what we could be up against.  It could be nothing--just a false positive.  It could be just the start of irregular cell growth like atypical ductal or lobular hyperplasia.  Those are the easy things.  I'm not even going to write the other things that are flashing through my mind that it could be or what they could end up being after 2 months of waiting. 

If we wait until surgery and the intraoperative (while I'm knocked out) pathology report comes back bad, we have to be "intellectually honest" as Dr. Colette likes to say about all of our decisions to save skin, nipples, and/or reconstruction methods.  She'll make the best decision she can for me because I'm going to be knocked out on the operating table at this point and won't be able to voice my opinions.  I could wake up with a completely different result that I what I closed my eyes expecting. 

The intraoperative initial pathology could come back good, but they will still do more detailed examination of all of the tissue that will take a week to process.  This means that surgery would use all the methods that I carefully agonized to make a decision over, and I would wake up without any surprises.  But a week later if that final pathology report comes back with a bad finding, we would need to do modifications.  Now we couldn't go back into surgery and remove the skin at this point, but this would mean that my nipples would need to be removed.  The only positive either way, is that I'll be free from almost all tissue that further cancer could grow already at that point. 

I asked Dr. Colette what she wants me to do.  I told her that I don't know what my abnormal results looked like in comparison to those with cancer or those with normal healthy tissue.  I trust her opinion, and even though she told me the choice is mine, I need her to give me guidance on this.  She said that she has her thoughts, but wants to consult with a colleague first to get an outsider's perspective.  We'll meet again next week to decide. 

I guess I better start working on that before surgery to-do list because I know that if we take the wait and see method, that I'm going to want to move up my surgery date a few weeks!

Monday, December 26, 2011

What a week

It has been quite a week!  It's been fantastic to spend these last few days celebrating the holidays with family, but we've also had a lot on our minds. 

It started out a week ago with my MRI (see the previous post called "I'm a puker.")  They were unsure of whether the pictures would turn out because of my uncontrollable movement while I got sick.  They called the next morning to say, "The images were all readable."  My response, "Good, so they all looked OK?'  "Your doctor will go over the results with you, we're just calling to let you know they turned out and don't need to be retaken." Hmmmm....

Later that same day I received a message saying that I needed to call my doctor back to talk about the results.  This is typical.  However, we we unable to catch each other all day over multiple tries and each time the receptionist didn't give anything away.  That was my first clue that something was really up.  Monica is usually the one to say, "Dr. Collette looked over the results and said your films looked BEAUTIFUL!"

Then we received a call from Dr. Colette in the evening.  I wasn't home but she talked to Mitch.  She said she'd try back later.  A doctor calling you at home after 5:00 from their personal phone line; that was clue #2.

When we finally connected on the phone, Dr. Colette told me that there were 3 suspicious areas found on the MRI.  This was what I'd been dreading for the last five years. 

I had two options as she saw it.  One was to just wait until surgery and see what it's like when we get in there.  That would mean that I could go in thinking I'd have one type of surgery and wake up with a very different result if when in there they found it to be cancerous.  My second option was to go for a secondary ultrasound and biopsy of the areas.  This would me possible pain and scars now, but we'd go into the surgery knowing exactly what we were dealing with.  She was also very clear that whatever the biopsy found could completely change our plans, meaning they could be gone before the end of the year in the worst case scenario. 

I figured that I have been aggressive in everything I've done so far along this journey, why stop now.  I immediately said that we needed to do the biopsy.  It was originally scheduled for the 29th.  But after trying to sleep just one night with this fear and anxiety, spending hours trying to find the spots myself without success, consulting dr. google, and my mind racing through all of the possible ways my life was suddenly going to change, I realized I could not possibly wait a week. 

I called the hospital in the morning and talked to someone in the radiology department.  I asked a ton of questions and then ended with, "I don't know if you can tell from the thousands of questions I just asked, but I'm really nervous about this.  If you have any openings earlier, I'd gladly take one...even a cancellation or something...I can be there in like 10 minutes."

That wonderful women found an opening for me today.  At 10:30 this morning, Mitch and I went in.  I knew they'd do an ultrasound first, then they'd use the ultrasound machine to guide the biopsy because none of the areas can be felt.  They dimmed the lights and began.  After 45 minutes of searching and taking plenty of ultrasound pictures, the technician said she was going to get the radiologist for a better look.  He then spent another fifteen minutes taking more images.  Their conclusion: there was nothing that they could find to be biopsied.

YESSSSS!!!!!  I'm healthy!!!!  All those prayers we were saying worked! Best Christmas present ever!

My doctor still needs to take a look at the ultrasound pictures and to see if she agrees with their determination.  The radiologist did warn me that based on the locations of the questionable areas, ultrasound has its limitations and that if Dr. Colette is still concerned she has other options before surgery.  I'm anxiously waiting to hear what she has to say, but I feel pretty confident in saying it was all just a scare.

In all honesty, I'm surprised that it took me this long to have a scare like this.  I did have one other problem with an exam, but that was when I was 21.  It's a very different type of worry when you're young and carefree. Now having children to be here for, it brings that worry to a whole new level.  I was sick to my stomach all week long, couldn't eat, had trouble sleeping. There's no way I am doing this again.  It's just a scare, but it completely confirms to me that I am making the right decision.  I cannot do this every six months after every mammogram or MRI.  In every book I've read, every BRCA positive woman has a big scare like this that puts them over the edge toward choosing risk reducing surgeries.  Mine just waited until had already scheduled it and my surgery was just 2 months away.  I guess I can check freak out off my list of things to do before surgery now. :)

Saturday, December 24, 2011

Merry Christmas!

I received a great card this week with a poem I had to share:

Tis the busiest time of the year,
tree chopping, gift shopping, kids loliipopping
and memories of friends far and near.
Tis the busiest time of the year,
still baking, gift wrapping, and
the red kettle bell to ring.
Take time to remember the most important thing, 
the laughter and joy our children bring.

Merry Christmas!

Thursday, December 22, 2011

My mantra

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all…

~Emily Dickinson

Tuesday, December 20, 2011

I am a puker

I am a puker.  If there is the slightest chance that something has a side effect of puking, it's going to happen for me.  I vomited for almost my entire first airplane flight back in fifth grade.  In labor, when I started puking, the nurses said it was a good sign (I think they said that to anything at that point).  My latest experience was during my MRI today.  This MRI was just to get one more surveillance round in before the surgery.  It was a way to ease my anxiety so that I'd feel pretty certain that we know how the post-op pathology report will turn out.
I've had them before and never had a problem.  Today was very different.  I went through the usual procedure of scrubs and metal detector.  They place the iv to be use for the contrasting dye and pushed me in my superman-ish position into the machine.  I cranked the music up and the first half went just fine. 

The technician came on my headphones to say that she was injecting the dye.  I immediately felt like I'd peed my pants (I really didn't thankfully).  I then got this intense metallic taste in my mouth and proceeded to dry heave uncontrollably for what felt like forever, but was probably just 30 seconds. I said between pukes "I'm (blaaaagh) getting (blaaaagh) sick (blaaagh) in here."  The technician came on and said "Are you OK? Do you want to be pushed out?"  But almost as quickly as it hit me, the feelings went away and I was back to normal.  I knew that we'd have to do the whole thing over if we stopped, so I said I think I'm fine.  I just had to stay in there for rest of the 8 minute series with my spit and drool over my chin.  Before the next two really short series, I had some time to clean myself up a bit and reposition my face on the head pad to avoid spots where I thought I had messed up. 

After the scan was over, the technicians helped me out and checked me over for other signs of reaction to the dye.  No hives or dizziness, I was just fine.  I told them that a friend warned me that she reacted like this to her first one, but since my previous ones were fine, I didn't think it'd be a problem.  They said that they switch types of dye since my last one, so maybe that's the culprit. 

Now I'm just waiting to hear back for the doctor to find out if the pictures from my puking incident turned out.  If my movement ruined the shots, I'll have to go back later this week to retake these.  At least I know what to expect the second time.

Ironically, while I was in the middle of this, Aila was at home pretending that her stuffed bunny Rosebud had "the pukes." She put blankets for her on the floor and needed a puke bucket for which she used the back of her toy dump truck.  It makes me feel better to know that Rosebud and I were suffering together. 

Sunday, December 18, 2011

Why did I choose to share?

Why would you choose to share this information with everyone? Do you really want everyone knowing this stuff about you?

I chose to share this information with everyone for a number of reasons:

Because I was tired of trying to figure out who I told and who I hadn't.  I like not having to start conversations with "Did I tell you about . . .?"

Because a friend mentioned that she wishes Caring Bridge was more interactive so that people could comment on the journal entries rather than doing so through guest book or personal emails.  This blog will provide that opportunity; feel free to comment away!

Because maybe seeing how hard I am trying to prevent cancer will make one person think twice about their own decisions.  If I can help one person put down their cigarette or finally make the call to schedule their annual exam they've been putting off, I will have been successful. 

Because I was so naive about the genentic testing when I first had it done.  I had no idea what to expect or what it would be like.  Maybe I can help someone else with this down the road.

Because I volunteer for the organization Bright Pink as a "Pink Pal" talking to other women around the country at varying points in their own journey, answering their questions about BRCA testing and sharing my story.  If I can talk to complete strangers about this, why can't I talk to the people I know and care about?

Because having a few more people praying for you can never hurt. 

Because at one point I looked at being BRCA positive as though I were were a ticking time bomb.  I once went on a hormonal pregnant women rant on a doctor for actually calling me that.  It's ok for me to feel it, but it is not OK for you to assume that I feel that way.  But now I realize it's been a blessing. I’ve been empowered as an advocate for my own health. I get the opportunity to work with experts. Knowledge is power. I have the power to change things in my life so that even if cancer grows in me, it will never be as devastating as it was for so many other people in my family.  

Because I can no longer back out now that everyone knows. :)

Just a quick clarification

Since posting this link on facebook, I have been overwhelmed by all of the support.  I'm thankful that all of you out there are thinking and praying for me.  I guess I should have warned my mom that I was posting it on facebook, so that she wouldn't be so surprised that she got some calls from people worried about me.  So... I must emphasis this: I do not have breast cancer. I had a genetic test done 6 years ago confirming that I have almost a 90% chance of developing cancer that will most likely occur in the next 10-15 years.  Because of this risk, I have decided to remove my breasts and rebuild them with a safer alternative.

I also forgot to mention on facebook, please don't say anything to Grandma yet!  I figured I would tell her myself when we stop over next week.  We all know she doesn't necessarily trust medical research (Grandpa who had multiple heart attacks did not have heart disease in her eyes), so if she mentions any scepticism afterward feel free to jump in.  Just make sure it's after I tell her. Thanks!

Tuesday, December 13, 2011

All the Choices

I am someone who needs to study the menus of restaurants online before going out to dinner because I cannot make a decision in the few minutes the waiters give you.   I am the most indecisive person about my order still flip flopping my choices right up until the last minute--unless barbecue sauce is involved. 

This sort of personality doesn't bode well for someone who is BRCA positive.  When I originally decided to participate in this study, I had no idea of the amount of life-changing decisions that I would have to make.  All of these decision are things that I have pondered, researched, obsessed over for the last few years. 

First of all, I had to decide whether to get the genetic testing done or not.  As I said in some previous History posts, I love free things, so this was a quick decision to me.  The next biggest decision was the move from surveillance to risk reducing surgery.  For my thoughts about this, check out the previous posts called the Road to this Decision.  Now having actually made that decision, you'd think things get easier.  Nope.  Not at all.  Here is a quick run down of all the options that I've had to figure out in the last few months:

1.  Skin sparing--Because I am choosing to do this surgery before I have cancer, I have the option of saving my skin.  Many breast cancer patients have to go through radical mastectomies removing all breast tissue and skin.  This leaves significant scarring and making the reconstruction process much trickier.  I can use my own skin; however, it comes with a risk.  They cannot remove 100% of the breast tissue with this method and there is still a very small chance that cancer could in the skin that remains. 

2.  Nipple sparing--Just like saving skin, I have the option of saving my nipples.  They would be removed during surgery, scraped clean of as much breast tissue as possible, then tested during the operation to see if there is any sign of cancer growth.  If the pathology comes back clean, they can be grafted back onto the skin.  This has a similar risk to saving skin because of the small amount of tissue that will still remain.  It also comes with the loss of all feeling, function, and change in shape.  There are alternatives if you chose not to spare nipples such as nipple reconstruction by a plastic surgeon grafting skin from another area to shape a new one or 3-D tattooing to create the look of one. 

3. Sentinel Node Biopsy--During surgery, all the breast tissue will be examined to check for any signs of cancer growth.  One additional way to check for cancer growth is through sentinel node biopsy. Several hours before surgery a radioactive tracer is injected into the breast. The surgeon can follow this to the sentinel node(s).  These 1-3 nodes will be biopsied (removed) to test of cancerous cells.  Some surgeons like to do this for BRCA patients because once the breast tissue is removed, there would be no way to ever find just the sentinel nodes again.  If cancerous cells were found either during the first surgery or later down the road, a more invasive surgery called axillary dissection would have to be performed.  There is a small risk (7%) of developing lymphodema, a permanent condition in which your lymphatic system doesn't drain correctly after the biopsy.  This risk is far greater with auxiliary dissection (30%).  As someone with no cancer right now, do I take the 7% risk now to save myself a 23% risk later?  Isn't everything I'm doing through this surgery making sure that I will never be part of the people who have the 30% risk?  If only there was some bigger perk to this biopsy, like maybe a permanent stop to underarm hair growth where the lymph nodes were removed.  Then I'd be all over this one.

4.  Reconstruction method with tissue transfer--If you choose to reconstruct your breasts, you pretty much have two options: implants or tissue transfer.  But within each of these there are numerous choices as well.

My original thought was to go for tissue transfer. Skilled surgeons can take fatty tissue from a donor site and reattach it to create breast mounds.  The possibilities include using fat from the abdominal area for a TRAM flap or DIEP.  Most surgeons around here are able to do a TRAM which is the simpler of the two.  With this surgery, they take a your belly fat along with 1 set of you "six pack" abdominal muscles. It would be basically like getting a tummy tuck while getting new breasts...sign me up.  The drawbacks however are that you are loosing your part of your abdominal muscles for the rest of your life, something I'm not sure if I could deal with.

The DIEP surgery is a newer version of the TRAM surgery where they use your belly fat still, but leave your muscle untouched.  They are able to leave the muscle behind because they perform microsurgery connecting the small veins and arteries to provide the blood supply to this tissue rather than relying on the muscle for the blood supply as with the TRAM.  The drawbacks to this surgery are that you are not only having breast surgery, but major abdominal surgery as well increasing pain, recovery time, and risks.  It is also questionable whether one would be able to carry a baby to full term after this sort of an abdominal surgery.  I don't totally understand this risk, what's really going to happen?  Is the baby just going to fall out of my abdomen?  I am 95% positive we are done having children, but still I am not ready to totally close that door yet.  It's enough that I've just made this decision to have the surgery, don't ask me to make another big one.

There are other tissue transfer options such as the gluteal flap, hip flap, or lat flap (using back fat and muscle).  Good luck finding a surgeon in small town Wisconsin to do any of these reconstruction options.  I'd have to travel to Milwaukee or Madison for any of these or the DIEP method or could even travel to New York or New Orleans for the top surgeons and breast reconstruction centers in the country.  These centers really do cater to women traveling long distances for their surgeries providing all of the normal pre-op care over the phone or skype.  Doing this sort of traveling would mean being away from my family and their support during the surgeries.  It astronomically increase the cost because of insurance coverage issues and travel expenses.  The plastic surgeons that I met with around here said that I wouldn't have enough fat for these transfers anyway.  I think they were just trying to flatter me. 

5.  Reconstruction method with implants--If tissue transfer is out, than implant is your next option.  To rebuild the breasts, plastic surgeons will insert an implant behind the chest muscle.  This makes it so that there is a biological barrier between the implant and the small amount of skin and left over tissue that could possibly grow cancerous cells.  This is normally done with the use of an expander.  During the original surgery they put in a small saline implant behind the muscle.  Every week and a half, the plastic surgeon will fill the implant with addition saline to slowly stretch and expand the area behind the muscle and build more of a normal looking breast.  Eventually this expander will be filled completely (usually a little overfilled) and a second surgery will be done to replace the expander with a permanent implant. 

Another newer idea, is to do this all in one step rather than through the use of expansion.  The plastic surgeon will cut the chest muscle and insert the full size implant right away during the same surgery in which the breast tissue is removed.  They will use alloderm, which is a tissue sample from a cadaver with all of the cells removed, to patch the area where the muscle was cut and needs extra support. There are higher risks for infection with this method and it really will not be a truly one step procedure.  This original surgery will be followed up by a revision surgery after things settle a bit to perfect the final result. 

Now with either method, you also need to decide on type of implant: saline or silicone.  The saline option is widely regarded as safer, but doesn't feel or look as natural.  The silicone options now come in a cohesive gel form that doesn't have the leaking problems that it had in the past.  The cohesive gel is kind of like a gummy bear consistency.  If they leak or rupture, they hold their shape, but is still controversial as they haven't been studied over longer time periods.  With either, they likely will not last your whole lifetime and will need to be replaced at some point.  There is also a risk known as capsular contraction, where your body rejects the implant squeezing it out of shape or in which scar tissue deforms the implant. 

There are just so many decisions.  All of these listed, plus little things like deciding where, when, with who the surgery will take place.  As soon as you make one, three more pop up.

Monday, December 12, 2011

Another popular question...

Another popular question lately has been: So how big are they going to be when you're done with surgery?

I must warn you, that I've found that some women I've met going through similar surgeries like this are very offended by this question.  I am not one of them. I see their point though. They feel that people are trivializing their surgery equating it more to breast augmentation rather than because of real cancer risks.  However, it's an honest question, something that I spent a good deal of time talking to my surgeons about. 

Unfortunately, I do not have a solid answer.  I am lucky in that my surgeon believes he will be able to do my reconstruction with one step, rather than through the use of expanders.  I also am able to keep and use my own skin, unlike women who have had radical mastectomies due to cancer.  He will have to use the skin that I have remaining and will choose an implant size to fill up this space.  Unlike typical breast augmentation, I'm having my entire breast rebuilt. So whatever cc size would be used to create a typical cup size will not be accurate comparison for what I will need.  He even said that depending upon how my chest cavity looks during surgery, I may need different amounts on each side as our rib cages typically aren't completely symmetrical. 

So long story for a short answer:  I will not know what size, but I will know that they will be healthy! 

Wednesday, December 7, 2011

What changed for you?

Someone asked me the other day, "How did you go from being so upset about your genetic testing results to so at peace with it and openly sharing about it?  What changed for you?"  Several thoughts crossed my mind.  I considered making a joke of it saying something like  "lots of wine."  But because this was a person considering going through the genetic testing process, I knew that I had to put the joking aside and be honest.  The only thing that helped me was time.

When I first received my results, I was 24 1/2 years old.  I then put myself into a mad rush to get to my doctor and schedule these surveillance recommendations I was given.  But she told me that I couldn't yet; that we'd start at 25 years old.  At the time, this angered me to no end!  6 months difference and you won't let me get a mammogram!  I still don't necessarily agree with this, but I will admit that having the 6 months to wait helped me gain perspective. 

In that time, I started to read up.  I found a fantastic resource in the organization called Facing Our Risk of Cancer Empowered, called FORCE for short.  This organization is full of women and men with a genetic predisposition to Breast and Ovarian Cancers just like me.  They have a wealth of information about the latest research and findings.  There are also a number of great books and movies available as well, my personal favorite being "In the Family."

Most helpful to me however, is the  active, supportive online community on the FORCE message boards.  Never in my time during course work with Marian would I have thought I would become active in message boards, but was I ever wrong!  On these message boards, I was able to read about women at varying stages in the process.  There were others just like me who were struggling to deal with their test results.  There were some looking for support leading up to their risk reducing surgeries or somewhere in between still in the decision process. 

For a long time, I just read these boards.  I was what you'd call a lurker.  I read the posts and other's responses, but never chimed in with my thoughts.  Over time, I became brave enough to post and now I am a regular lending my perspective, opinions, and support whenever possible.  I wonder if any of my aunts or cousins are also members?  Maybe we've chatted on there and we don't even know it :)  It even prompted me to join another message board full of women who all had babies around the same time that I had my first.  I've met some great friends through this process!

It took a long time for me to just be able to talk about my test results.  At first, just my parents knew.  I think somewhere along the lines, they told my brothers because I don't remember having to tell them.  Then I let a few friends in on it, but I felt like I had to hide it still at work because I didn't want Human Resources to find out what a drain I'd be on our insurance.  I found though that the more I talked about it, the more confident I felt about it and the decisions that I was making. 

Time also allowed me to better understand the options.  At first, you are so overwhelmed by all the numbers and terms.  They sound so huge and scary (and they really are!)  But after having been through all of the surveillance recommendations one time, I felt much more at ease with the fact that I would be doing this for the rest of my life. 

Sometimes, time is all you need.  In fact, that's what I'd like most for Christmas.  Just time.  Time to go on a date with Mitch.  Time to play dress up with my kids.  Time to do my favorite things with out thinking about the laundry or my bag full of school work stacking up.  Which is what I'm off to do right now.

Thanks for reading! 

Monday, December 5, 2011

The countdown begins

We have a date!  I got a call from my doctor tonight giving me all of the details.  I just sent in my request for medical leave.  It is official.  I can now start counting down the days. 

February 27, 2012 

Saturday, December 3, 2011


This is a great animated clip that demonstrates the genetic mutation process from the film In the Family.