Consumed

I am completely by consumed by this.  For over a year now, since finding about my BRCA results, it's been on my mind all the time!  It's getting worse.  In the first few months after the initial coming to terms with the results, I could go a couple days, maybe more, without thinking about it.  But more recently, for the last 6 months or so, it's daily, if not multiple times per day. 

What am I thinking about?  Cancer.  Getting Cancer.  Not getting cancer.  Wigs.  Mastectomy.  Scars.  Implants.  Lifting restrictions.  Pain medication.  The passing on of my genetics.  My daughters.  Breast feeding.  Nipples.  Ovaries.  Exanders.  Hospitals.  Hospital food.  Hospital Beds. Mastectomy bras.  Surgeons.  Drain tubes.  Will I be okay with my new boobs?  Will my husband be okay with my new boobs?  If they turn out terrible will I find enough comfort in my reduced risk to make up for it? 

I would compare this to pregnancy.  That living being inside of you is hard to forget about.  Moving around with it's little heart beating.  Kicking at you from the inside.  The little hiccups.  I felt kind of that way about my boobs right now..and to some degree my ovaries.  Except with far less fondness...they're not going to come out a cute precious little baby.... hopefully they'll just come out and let me stop thinking about them!  Hopefully I'll get used to their new feel and get used to seeing the scars, and I'm sure it will evoke some thoughts or feelings from time to time, but hopefully when the timebomb is gone, it will no longer consume me.

Out in the Open?

I am unsure how open I want to be with this blog.  There are still many people I haven't informed of my situation, and some people I'm not sure if I want them to know.  I know that by putting this out on the internet without restrictions, and telling anyone about it, I'm making it "public" but that is different than posting it on my facebook where all my friends, coworkers, and family will be notified of it's exsistance.  

I have 2 daughters.  My first daughter is from a prior marriage. My biggest concern is my older daughter finding out this information and what that will be like for her, trying to understand what this means for her.  I haven't shared any of this with her, and I'm not sure how to (or when to).  My second concern is her grandmother or other members of that side of her family finding out and becoming concerned about her genetic situation so many years before we can even find out.

I feel like I definitely need to be the one to have this conversation with my daughter and I want it to be on my terms, in my own time.  So I suppose when the time comes that I'm ready to tell her about this, that will be when I'll post this more openly.  In the mean time, I hope that any one reading this who knows someone who knows someone (or is someone) who finds any benefit in reading this, will share with others.  I'm just not ready to post it on facebook.

Surgeons

I've now had my initial meeting with both the breast surgeon and the plastic surgeon to consult about the mastectomy and reconstruction.

As advised, I met with the plastic surgeon first.  His office had by far the most fashionable "gowns" to wear.  They were blue toga looking things with a gold clasp at the shoulder, quite comfortable as well.  The nurse then took my blood pressure and oxygen and we had a Q&A session.  I didn't really know what questions to ask her verus the surgon, so I just saved most of them.  She asked me about my autoimmune disorder.  I explained that it is just something that came on a few months ago - the end of January, and we had a biopsy and determined it was unknown autoimmune condition affecting my lungs.  She then dropped the first bomb on me - apparently I may not be able to have silicone implants as an option if I have an autoimmune disorder.  This raised a few questions that she didn't have the answers for.  I had come into this thinking it was most likely I would want silicone.

Then we had a photo shoot!  She explained that they used the pictures to compare before and after and that if they had my permission and (IF?) he liked the outcome he may want to put them on the webpage.She had me remove my robe and stand in front of the blue wall. She took pictures from various angles and then had me put my robe back on and wait for the surgeon - (I wonder if they would let me have digital copy of the pictures...)

The plastic surgeon then came in and examined me, and we discussed what my expectations were, that I wanted nipple sparing with immediate reconstruction with expanders.  He said based on my breast shape that I would be good candidate for nipple sparing.  He did indicate though because of the thinness of my skin, it would be unlikely that I could get much larger than I am now (and said unfortunately that isn't something I can fix with icecream...bummer)  We discussed where the incision would be - I asked about having the only incision surounding my nipple and he ruled that out because it would be too difficult for him to get the alloderm and the expander in.  I asked about having the incision under the breast (in the crease underneath) and he said that he would strongly advise against that in my case with the distance from there to the bloodsupply..  So that is a bummer as well!!  He invisioned an incision out a little on each side and under my nipple..

So I asked him for more clarification on the silicone/autoimmune disorder issue, and he said that basically that after the FDA had disallowed them and then let them use them again, they had placed more constraints on their use, and so in my case he feels that if I am well informed and have the support of my rheumatogolist I may still be able to get them... so we'll see.  He was also concerned about the autoimmune disorder and the medication I'm on being problematic for reconstructive surgery.  So he said I need to be in optimal health and have my condition well controlled.   This was all stuff I hadn't considered.  I left the appointment feeling some level of distress.  After all I don't know anything about this condition!  I know I'm feeling okay now.. but the rheumatologist said this could take anywhere from 6 months to 2 years to resolve entirely - I can't wait 2 years!!!!  I'll be almost 32 by then. 

The next morning I met with the breast surgeon.  They had me wear a short pink CAPE with a snap neck closure.  Then the surgeon came in and she asked what prompted this visit - I explained I had been thinking about it since the fall and was going to indicate this at the high risk clinic but when I told the coordinator, she said there was no point and recommended I just move forward with the consultation outside of the clinic. (to avoid an extra appointment).  This satisfied her.  After ANOTHER exam - we discussed her thoughts on things.  I explained what the plastic surgeon had said.  It was apparently she was familiary with him and his work and she was comfortable with nipple sparing if he was.  She also indicated that recent research has shown little difference in the risk between nipple sparing and non.  I expressed my concern about needing to wait because of the autoimmune disorder, and she was on the same page as me - basically if the rheumatologist thought this would be taken care of in a few months then we should wait, but if this is long term or will potentially go on indefinitely, then she thinks it's in my best interest to act sooner than later.  Based on the early onset history, she agrees that waiting 2 years may be too long, and if we needed to work around the condition/medication we could figure something out in conjunction with the recommendations of the rheumatologist.  She also mentioned that she would recommend a sentinal node biopsy that would be done at the time of surgery and probably require additional incision in my armpit.  There can sometimes be cancer hanging out in the lymph nodes when it's not present in the breast.  Apparently they take up to 3 lymph nodes in this procedure and biopsy them there in the operating room, then if they happen to find cancer in them they'll take them all out.  I'm going to research this more, but it seems like something we should do!

So I was very happy after I met with her - she was reassuring, and she said she would talk to "Mark".. she's apparently on first name basis with the plastic surgeon.  They would discuss what their concerns would be with my autoimmune disorder, and then she would call the rheumatologist to discuss.   She also thought it wouldn't be a problem to schedule the surgery for the second half of September sometime.  She and "Mark" both have Tuesday as their surgery day so it shouldn't be a challenge for them to coordinate being there at the same time.  (So I guess it will be a Tuesday).  Looking like the 27th, since my parents will be out of town until the 22nd...

So my current plan of action is to have my follow up appointment as scheduled with my rheumatologist in July, as well as have my screening MRI.  then see where we're at and if we're all on board to move forward with scheduling the surgery.

With all that said - after my thorough exam and mammogram on Monday, exam on Thursday, and exam on Friday - my boobs hurt.

Mammograms

As of Monday - "Mammogram Monday" i have had 4 of these!  I don't find them to be extremely unpleasant... Sure, they're not fun, and they're uncomfortable, and they leave me a *little* sore for a couple hours.  But I think there is alot of hype about how unpleasant they are, and I worry that some people may put off getting them because they hear how terrible it is.  I've now heard it both ways "the bigger they are, the more it hurts" and "the smaller they are, the more it hurts".  Maybe next time I will ask the tech "who complains more, large breasted women, or small breasted women?".

My first one was back in 2008, when I had my first mysterious lump.  I don't remember it much.  I think because I was so concerned about the lump.  I just remember it being uncomfortable, but not a big deal.  The mammogram was inconclusive.  They did an ultrasound and determined it was something to be removed/biopsied.  I was then told by that surgeon that until I'm substantially older I shouldn't get mammograms because my breast tissue is too dense for them to be very useful, and with that said they may subject me needlessly to radiation, so I should "opt for ultrasounds".  I brought this up after my BRCA test result in the planning of my surveilance, and they said the benefits outway the risks.... okay.

The second one was FINE.  This was after my BRCA result and part of my surveillance. I recall vividly that I felt this one was much better than my first.  

The third one was the worst and I imagine it would rank up there with the worst for many people.  Hopefully it was the worst I'll have.  It was after a core needle biopsy, and they wanted to make sure they got the marker in.  So after they stuck a giant needle in my breast to remove little pieces of (another) fibroadenoma.  They stick my numb boob in the contraption and squeeze it this way and that!!  I bled all over the place and the tech got all nervous that I was going to pass out.  She made me sit down and rushed off to get me water and cool washcloth.  I think she was more disturbed than I was.  I can handle my blood, but regardless... that was definitely unpleasant.

Both of my screening mammograms have started out with confusion about my doctors orders because when you're under 30 you have to have specific doctor's orders to get them done, and for whatever reason they never seem to make it to my file in a place the nurse can find them prior to me getting there.   They do an extremely thorough breast exam and tell me what they're doing and what they're feeling or refeeling, sometimes having me feel what they're feeling.  They've been very interested in the BRCA result and what I was told by the genetic counselor.  Both of these nurses (and now I find myself wondering if it was possibly the same person)  were very sweet and sensitive to my feelings, they wanted to encourage the self exam and teach me how, but understood why I "do it halfway" (because I always feel things that I don't know if they're normal and I assume they are, so I don't know exactly what to look for). 

Then I go in for the actual mammogram.  This time I took note that it wasn't so much the squeezing of the boob that was uncomfortable but the strange position I was placed in and the squareness of the contraption in my arm pit, in my breast/underarm area which was somewhat tender after the thorough exam.  I was somewhat amused by the way the tech moved me and positioned me like an impossibly flexible mannequin, then told me to "smile pretty".

Anyway, It is certainly not my favorite thing in the world, I would put it in the realm of the other annual exam us women need to get - fun? NO.  A good idea?  DEFINITELY. 

Starting off my blog

I feel like I need to write a book to provide background to where I am now. This blog really should have started over a year ago when I first started down the road of genetic testing.  It all happened fairly quickly.  My cousin passed away from breast cancer at the age of 37.  I thought it was too much of coincidence that my Aunt had also died from Breast Cancer at the same age (this was not my cousin's mother, but her aunt as well - my dad's sister.) 

I had a lump in my left breast a few years ago and ended up having it removed - it was a fibroadenoma (benign).  And when I was there I talked to a few people about whether I would be considered high risk because of the diagnosis of my Aunt and my Cousin on my Dad's side.  I was actually told by someone at that point that there was no evidence that breast cancer would be hereditary through a paternal link. Well geez... that person was WRONG. 

When we found out about my uncle's positive test result after my cousin passed away, I talked to my ob-gyn about my risk, and asked if she could refer me for genetic counseling.  She thought it was warranted and made the referral.  It seemed like an obvious thing to do.  I'm a person that likes to know.  If there is something to know.. I want to know it.  I can't say I haven't regretted that decision a couple times since then.

At the time my chances were only 25% because my dad hadn't been tested.  I thought I had prepared myself mentally for the news either way, when I sat there with my husband waiting to recieve the results.  As soon as she entered the room, she sat down and cut to the point.  "the result was positive".  I felt a little crushed inside.  I teared up.  There wasn't alot to say at that point, since she had been so thorough in the initial counseling.  I had tested positive for a BRCA2 mutation, increasing my risk of breast cancer to 84%.  She reiterated a few things about options, gave me some pamphlets and said the patient navigator at the high risk breast clinic would be working with me to get set up with my first appointment.  She also put her hand on mine and said "This is NOT a death sentence".

At the high risk breast clinic, I met a surgeon to discuss my surgical options, he kind of casually laid the options out there, and they seemed so drastic, I don't think I paid alot of attention, because I really wasn't ready for those kinds of steps at that point.  I then met with the oncologist, who gave me all kinds of interesting information.  For instance, he confirmed that it would be likely based on family history that my specific genetic mutation would indicate an early onset - since both my Aunt and Cousin developed breast cancer in their early 30's, it was fairly likely I would as well.  He said I had a few things working in my favor though, and while he would not encourage anyone to do these things, it could possibly have the effect of delaying onset.  First I had my first child VERY young, and when you have your first child you stop developing ducts in your breasts, so I have fewer ducts than most people.  Plus I smoked for 10 years, and smoking reduces your estrogen.  Of course neither of these things should be recommended because of their other negative impacts. He did also say that I absolutely needed to quit smoking, because in a nonsmoker in my situation when we can catch the cancer early because of the level of surveilance I'll have, the odds of survival are 90%, however in a current smoker, that drops to 50%.  That's all I needed (and a medicinal aid).  I quit. almost a year ago now.

I started out feeling the way I wanted to go was surveillance.  Even when my first MRI resulted in a callback and further testing, and core needle biopsy, I reminded myself that I knew this is what i was in store for with surveilance.  I might have a biopsy every time I have an MRI.  I thought I was prepared for that.  I felt like if I were to get cancer I would go through treatment, have a mastectomy at that point, and he'd catch it so early, I'd be okay, and never have to worry about it again. 

I don't remember now what changed my mind, but sometime in the fall I really started obsessing over it.  I started drawing it out something like this.. but I broke it down in different ways.. I'll just share this example of one, it makes it pretty obvious

So the way I looked at this was that I had 2 options - 2 Rooms I could go into, the first was "Surveillance", the second was a prophylactic bilateral mastectomy.  After obsessing over these drawings for a couple weeks and talking about it outloud to a couple people I made my choice. I would do just about whatever necessary to get into that second room.

Then it was just one thing after another, with the holidays and birthdays, and crazy stuff at work and what not, then I had a weird health issue with my lungs, pleural effusion, chest pain, having to have a lung biopsy, and being diagnosed with "an unidentified autoimmune disorder affecting the lining of my lungs".  GREAT. 

So I'm mostly better from that episode now, and I'm moving forward.  So here I am a little over a year since my first appointment with the high risk breast clinic, and on Thursday (in 2 days) I have my appointment with a plastic surgeon, to be followed by an appointment on Friday with a general surgeon for consultation on my mastectomy.

I wanted to start this blog so I could get out some of what I have in my head, and maybe I'll share my experiences, and others will read and not feel so alone.  I've found it tremendously helpful to read the blogs of others who have "been there, done that". as well as those who are currently exploring their options and making decisions like I am.