Doing the opposite.

I get the whole "pink" association with breast cancer and how we can show our support but I have the opposite thoughts. I want to be proactive and healthy but I cannot let "pink" define my life. It cannot be all that I think about. It is not, though it is taking up a lot of space in my brain right now (and after two kids I feel I have little space left anyway!). It is harder to stay focused at work and at home when I can be researching, finding doctors, reading message boards, etc. So, my take on this is to: Stay Calm and DON'T think pink (all the time!). I hope that I can take my own advice.

It is a gamble. . .

I had a follow up genetic counseling session today with the counselor and an oncologist. It proved to be very helpful as I had a lot of questions. The more I read and research, the more I feel like I have a handle on my true risks. It seems the initial number given to me applies to BRCA 1 and BRCA 2 carriers combined but since I am BRCA 2 my personal risk for ovarian cancer is about 10%. To top that off, I have no one documented in my family history with ovarian cancer (that we know of). So, that makes me question why a Dr. would even recommend that I have my ovaries removed? Would you remove your leg if you had a 10% chance of getting bone cancer in your leg?!?If you had a 10% chance of winning the lottery would you still play if the price of a ticket were $1000? Probably not. It is all gamble at this point. I get that a lot of women do it for different reasons, if I had seen someone in my family struggle through ovarianc cancer it’ll probably be more of a concern to me. I just feel that if I know my risks are not that high and also a surgical menopause can change the quality of my life and put me at a small increased risk for bone issues and cardiovascular disease then surgical options for my ovaries are not something I am interested in at this time.

The other thing that was mentioned by the Dr. is that my risk of dying from breast cancer is very low. My risk for getting breast cancer is high, but with the surveillance technology available, if I do get cancer it would be caught super early as I’d get monitored every 6 months. I am not going to lie, for a split second I questioned myself and my decision to get a PBM (prophylactic bilateral mastectomy) because what the Dr. said is so true. Most women survive breast cancer and if it is caught early then why let it worry me so much. But, then we got to talking about my mom’s history and we reviewed my file. My mom had her first lump biopsied when she was my age. And for twenty years she has struggled through the stress and anxiety that go along with getting mammograms, biopsies, and waiting for results. In fact, she dreaded it so much she actually missed one year. Most women (even without a genetic risk) dread their yearly mammograms. I am not sure for the next twenty years that I want to be going through that, with finding lumps, having them biopsied, having them removed, and waiting by the phone even if I never got cancer. There is also something to be said for the stress it causes on your children. I do not remember being super worried about my mom through all of her issues but I am not a typical "worrier," I am not able to predict how my children would react to my stress through these issues, though I know for a fact it would stress Dan out immensely. I know my mom was terrified every time the phone rang to hear her results. Though I haven't processed this all the same way my mom has, I can see that being stressful for anyone. My thoughts were, if I most likely will eventually get cancer and at that time, would opt for the mastectomy anyway, why not do it now and save myself the stress and anxiety (not to mention money for the surveillance as my MRI was 300 out of pocket) and go for it now while I am healthy. So, again, thinking logically and rationally, I think I am ok with my decision to move forward.

As far as the ovaries, I’ve decided that I am in absolutely NO rush to take those bad boys out. Do I want more kids? Most likely no,  but I don’t want to be in menopause at age 31 or even 35 or even 40. I am ok with surveillance for at least 10 years. Easier said than done, right? I think I’ll be able to handle the stress of screenings as the ovarian cancer risk is not that high in general and certainly not high in for a person between ages 30-40. I’ll be making an appointment for this summer to begin my surveillance efforts and go from there.

Next stop....the plastic surgeon on Thursday.

Changing things up.

As you probably noticed, the picture I had on my header is of my mom. She is currently battling breast cancer. My sister, Jenn, (http://fybphotography.com/) took the picture of her and the pictures proved to be very inspirational. It gave us all the push to fight even harder, including my mom. I used that picture as my blog header because my mom is the reason why I got tested and why I know what I know. If it weren't for her (though it sucks she has cancer) getting cancer, I would have never even suspected I could be at risk. I would have continued on the same path and probably waited until I was 40 to receive my first mammogram. Thank goodness I know, thanks to my mom and the fight she has ahead of her. She took the news very hard that I was positive but I think she realizes now, that me knowing is so much better than not knowing and going down the same road she is right now. She'll begin a very aggressive round of chemo and then have radiation. I am an adult and it is terribly hard to see your mom struggle through something like that, which is why I cannot allow that to happen to my kids, knowingly. If my mom had the choice years ago, I am sure she'd do the same thing.

 Here are several of the "moments" that my talented sister captured of mom.

Though my mom was the reason I got tested, she isn't the reason I am fighting this and taking drastic measures to prevent cancer, which is why I took down the picture. I've changed focus from digesting the news to taking action. My kids and my husband are the reason that I know I have to take this all seriously and do what I can to prevent it from happening. My family is everything to me. Picking them up from their respective places (school and babysitter) are the highlight of my day. Spending every minute with them is what makes me happy. Dan, Sean, Carter, and I have so much fun. I love everything about my life and I want to keep it that way. Now that I know more about the mastectomy, I've realized it is a lot more than I originally suspected. It is going to be hard, it is going to be painful, and emotionally challenging. But, at this point I don't feel like I have a choice. I have an appointment with the plastic surgeon on Thurs and that will be the first step in this process. Am I scared? Yes. Will I do it anyway? Yes. I'll do it so I can be a mommy and wife to the most important people in my life for a long, long time.

It is not black and white.

Depending on what book you read, who you talk to, or what websites you explore you could be told to avoid quite a bit of things in your life to reduce your risk of cancer. This concept frustrates me and scares me at the same time. For one, I feel like at this point “everything gives you cancer”. For instance, I decided to implement flax seeds into my diet as they are a great source of Omega-3 essential fatty acids, and fiber. So, one would assume these would be a great healthy choice. Wrong. Depending on the site you read or who you talk to, some BRCA previvors avoid this due to the content of estrogen (along with avoiding all soy products). This is exactly what I mean, something that is good for your whole body perhaps isn’t good for one particular type of cancer. WHen you ask your Dr. though they often tell you not to worry about that kind of stuff because it isn't scientifically proven, but yet so many do. The same goes for birth control pills. They are not recommended for BRCA carriers as it is increases your risk of breast cancer, due to the fact that estrogen is linked to breast cancer, but decreases your risk of ovarian. I mean, really?!?!

I guess I am just frustrated as I want it to be black and white. Eat this and you won’t get cancer, take this pill and you won’t get cancer. Wouldn’t life much simpler if that was the case?

Here is what I am changing:

1.    For breakfast everyday I switched from instant oatmeal to steel cut organic oatmeal (and will continue to encourage Sean to eat it though his first encounter was not pleasant)

2.    I am adding flax seed to my daily diet (in the oatmeal). I choose the overall benefits rather than worrying about the estrogen levels. I will speak to my Dr. about this though.

3.   Organic milk all the way. For years we did buy it for Sean but recently due to “budget cuts” in our house we went back to regular. We will use organic only from now on.

4.   I am attempting to buy most fresh fruits and vegetables that are organic.

5.   Switching from plastic storage containers to glass. At least that is an easy one!

Like I’ve posted before I am very active so I do not feel a need to increase my activity level. I am still working on my weight. I’m losing it very slowly this time (post pregnancy), which is ok. 

I’m still struggling with the soda. I’ve switched to diet due to the caloric intake but I really like regular better. (and regular has no artificial sweeteners which is good). Once my weight is more under control then I will stop drinking soda all together, and when I do, have a regular soda in stead of diet. 

If anyone reading this has any suggestions, please share and post a comment. At this point, I feel like the best plan is to provide myself and my family with a healthy lifestyle. That in itself has many benefits besides the reduction of our risks to cancer.

True.

MRI Results.....

are normal!! I got the news Friday afternoon just as we were about to leave for the weekend. Whew. As I said, I assumed they would be normal but it was great to hear it was official! It allowed me to kick back and relax this weekend with some of my closest friends without a thought about it!

Stupid dry cough...

Today was the big day for MRI/mammogram. I wasn't really nervous, I've had several MRI's before but on my head (headache issues) so I knew sort of what to expect...being confined, not being able to move, being a little cold, and the insanely loud magnet clicking noise that keeps me from falling asleep! I was pretty relaxed going in and thought I'd take advantage of my quiet (minus the loud beeps) time to relax and lay down for 45 mins. Isn't that wierd that I looked at it as a way to relax when most women come in tense and stressed? I know, I am wierd. The tech said the more relaxed I was the better as it meant I was able to keep my body more still throughout the MRI.

So, I get loaded into the machine, which means I laid on my stomach face down and I had to have my hands over my head and an IV hooked up. It wasn't actually uncomfortable except my arm kept falling asleep. Well, all was going well until the tickle in my throat came on. You know that little dry tickle that makes you continuously cough and cough. Well, it happened today. I knew I wasn't supposed to move and though I could conveniently see the timer ticking backwards until it was over (I had  series of pictures done and each one had a certain amount of time displayed on the timer) I could not, I meant could NOT hold in my coughs. It was sooo annoying. I had to repeat two images (which added even more time in that stupid machine!). One of them, which was super important because it could not be repeated as I was injected contrast dye into an IV, was 6 minutes long. That was the longest six minutes of my life! You know when you are trying not to cough and thinking about not coughing the only thing you really want to do is...cough! Anyway, I had the nicest MRI tech helping me who was super sweet and got me a cough drop and let me cough in between sets of images.

She told me on the way out I would most likely need a mammogram also, NOT because she saw something on the MRI (I hope!) but because it is standard for the radiologist there to request both to compare the results. Ugh. So, here we go again. I've left a message with my Dr. to ask about that and to find out the timeline for which I'll know. The tech said a couple days which I can handle.

I've said it before, but I'll say it again. The most logical results would be I am clear. I am healthy, active, and young. It isn't worth it to assume I'll have cancer when all other signs point to the fact that I don't. Until we know otherwise, lets just go with that.

So much to take in. . .

Obviously my mind has been on the life changing news I received recently. My efforts are now focused on prevention, though I have scheduled my consult with a surgeon. At first, I needed to digest. Now, I am ready to fight. I am doing a lot of research about my diet and its affect on my risk for cancer. The medical field in general will not give you a definitive answer about diet and how it affects us. But, it kind of makes sense that it does in fact effect our risks of all sorts of cancer. These are two of the books I just ordered, I hope to find them useful in this process.

I know I have to make changes and I am slowly gearing up for that. I am not going to go cold turkey, because I think that would be hard. I don't mean to sound like I eat a horrible diet, because I certainly do not. My issue is I eat a healthy diet but I still love to eat some not so healthy things. They are my temptations that I mostly avoid, but are still there. My least favorite thing to give up will be....dun dun dun.....soda. You all know how much I love me some Dr. Pepper. Recently, due to weight loss efforts, I swithed to diet soda (which I don't like as much but it'll do) and now I know that I need to stop that as well. Who knows what the risks of aspartame are and how they affect people like me. I guess it is a small price to pay for some peace of mind.

My major focus right now is just to lose weight, for a lot of reasons. Once I get back to my healthy pre-pregnancy weight, I think I'll be ready to ditch the diet soda and regular soda for good. Though, I am sure I'll indulge from time to time. Moderation is key in any lifestyle choices we make. The one area that I don't have to change or worry about is my activity level. I do enjoy to exercise and keep in shape and that in itself reduces my risk for cancer. At least I can mark one thing off the list. Next up, a healthy weight and an even healthier diet. I can do it.

Love this!

The statistics

Its been a few days since I met with the genetic counselor. As I walked out of the appointment, I realized I will be ok. I have not been given a death sentence--Yes, I have increased chance of a few types of cancer but  know what I can do to prevent that from happening.

So here are the stats:
87% chance of breast cancer
44% chance of ovarian cancer
7% chance of pancreatic cancer

If I am pretty drastic with my preventative measures, meaning surgically drastic, then my risk of of breast cancer goes down to 10% (same as the general population). I found out good news about my type of gene and ovarian cancer, also. It seems most of the cases of ovarian cancer that show up in BRCA 2 carriers are in women in their 40s and 50s...not 30s. So, the pressure to remove them is not high at this moment. When I do remove them my risk of breast cancer also improves to 6% (from 10%). The counselor actually advised against removing the ovaries for someone my age with two small children. Surgical menopause is not something I want to experience right now without a good reason. Obviously, the risk of pancreatic cancer isn't as high but it is drastically higher than the regulation population at 1%. Dan asked how we can be vigilant about my screenings for that and the response was that at this point they are doing research on how to "screen" for pancreatic cancer. Right now, the reason it is so deadly is because once you have symptoms the cancer is too far advanced and it is too late for treatment. Lets hope that the advances in pancreatic cancer screenings improve soon, for everyone's sake.

Dan and I had a lot of questions, we spent an hour and a half with the counselor and got a lot of answers. Though I could tell Dan's anxiety level was higher than mine, I think he also felt better after speaking with counselor. I did not get confirmation that diet can affect my risks. At this time there is not scientific proof that the two are linked, though obesity is a risk factor and we know that diet and obesity go hand in hand. So, Dan and I decided to be even more extra careful about what eat in this house. It will take some time to completely rid our house of some the "not so healthy" choices we make, but we have a good reason to follow through. As far as the kids goes, their chance for having the gene is 50% but there is no screening for them now. We need to go on about our life and making healthy choices for them with their diet and exercise level. Once they are mature enough to handle this process then we can let them know of their increased risks and talk about genetic testing. If Sean is positive, he would have a 20% chance of prostate cancer so obviously this gene is more harmful in girls. Ahh....my sweet Carter. I cannot see her go through this so lets all just hope that by the time she is my age, that breast cancer will be obsolete and they'll find a cure. As much research and money that is being poured into this disease, you would think in 20 years we would be able to put a stop to it.

I mentioned that I felt like a double mastectomy and reconstruction was the best most obvious choice for me, I think after having the appointment and hearing the statistics, I am 100% sure that is what I need to do. I need to be screened more often than the general population, which means every 6 months I have to have a mammogram and an internal ultra sound to monitor my ovaries, etc. I cannot sit by the phone every 6 months and wait, and wait, and wait for the bad news to come. That is no way to live. If I have the surgery I'll never even need another mammogram. I'll still have to have the ultra sounds for my ovaries but my risk for ovarian cancer is not that high, right now. I just feel like this is the best option for me. I know it seems drastic but I have done a lot of research lately about a double mastectomy and reconstruction so I do understand what I am getting in to. I know it will be hard, I know I won't be able to take care of my kids for a decent amount of time and there will a lot pain to go along with it. I asked the counselor point blank, given the drastic reduction in risk, it seems so simple...a double mastectomy is the only answer. She agreed.

Dan and I were able to get away and have a "date" night last night which was good timing.(thanks to a great friend who knew we needed some time) Though our conversations were that of the typical "date" night it was good to figure some things out. There is not really a great time to have something so drastic done to your body...so figuring out the timeline is difficult for us. I know I will need help with the kids so the summer seems logical...but then we have family vacations and all sorts of summer fun that would be dampened by that. So, in my opinion summer is not an option. I want to enjoy my time as a stay at home mom and do all the wonderful things that we are able to do. Fall is the top of my list but it isn't easy for Dan to take off a lot of time from school. We have two weeks off at Christmas but again, that would make it hard for me to enjoy my family time with the kids. I guess after I meet with the surgeon we will need to make a decision about the timeline of this surgery.

After speaking with some who've experienced the exact surgery it seems that the first few days are tough and he'd need to be very actively involved in my medical care. To spare your stomachs, I won't get too detailed but I asked him if he was ready for that? Will he be able handle seeing me like that? In pain, in a hospital? At least I have some time to help prepare him for that. Not sure any husband is really "ready" for something like this.

So, now the next step is my MRI screening in a few weeks, a consult with an oncologist (who usually sits in on the genetic counseling appointment) and a consult with the surgeon of my choice. The Dr. I already have has a great reputation for this type of surgery and so I'll plan to meet with him in the next few weeks. I have a lot of medical questions that I need answered. I know there will be some emotional stuff that goes along with changing my body in such a way but I feel like because it is MY choice, it will be easier (at least I hope so!). It isn't being forced on me, like those with cancer, like my mom, it is MY choice and I know what I am getting into and I know the payoffs make it well worth it.

Genetic Counseling

Today is the day of my genetic counseling appointment. The counselor will be the one to give me the, perhaps hard to hear, news which include my actual risks for breast/ovarian and other types of cancer. I've been good and stayed away from "googling" this information. I have been reading some of the websites that focus on "pre-vivors" which is what I guess I can call myself. It is a name for those who know their risks and take some steps to prevent cancer (some more drastic than others). I've found a few helpful websites, one being facingourrisk.org which stands for: Facing Our Risk of Cancer Empowered. It is was nice to read some stories from those who have been in my shoes and made some similar decisions. At this point, I've come to terms with the fact that a double mastectomy and reconstruction is in my near future. I know it might seem so drastic to some but I cannot live my life "waiting" for the bad news to come in. I've had a breast surgery before, seen my mom go through it, and have a pretty good idea of what to expect so it seems like a simple solution, though not a painless one. I have a 70% chance (if that number changes after my appointment I'll update) of getting breast and ovarian cancer. There are not a lot of ovarian cancer survivors. That is why one of my important questions for the counselor is when is the best time to have my ovaries removed? I would be put into a surgical menopause immediately and from seeing the effects of menopause on others I know that will not be a fun time for me. I also want to talk about what I can do to prevent cancer as far as my lifestyle changes. I want to know what foods I should avoid, or how I should change my diet. I know now, sadly, that my kids have a 50% chance of also carrying this gene. What can I do to keep them safe? When do you tell your child that kind of information? At what age is that appropriate information to share? How do you even tell them such information? Ugh. So many issues that have come up that I did not foresee. The thought of either of them being affected by this breaks my heart but at the same time at least I can take preventative measures for them. I know it isn't my fault, passing a gene for this is no different than passing on my hair color but it obviously has much different consequences. I am excited and nervous at the same time for my appointment. If I have a plan, I'll be ok and today is the first step in making that plan.

Am I so strong?

Its been a few days since I found out the news. I posted on facebook that I had recently gotten some bad news. For most, they knew exactly what that meant and offered words of support. Unfortunately, those who didn't know assumed the worst and I got lots of "are you ok?" emails/phone calls/and posts. I didn't mean to alarm people but like I've said before, I wasn't interested in talking about it yet and that was the easiest way to inform my close friends.

During the past few days I've had many conversations about what is going on and I get the same reaction from most, you seem so calm, and so together and so strong. I guess I am not sure what kind of reaction I am supposed to have? Should I cry all day? Stay up all night worrying? Skip meals because of the stress? (oh boy that would be nice for the diet!) I don't know? I am reacting in the best way I know how...being rational and calm. I just don't worry about things and so this is no different. Like I said, I am healthy, I exercise more than most, am not overweight (though I do have a few lbs to lose) so why should I assume the worst? Why should I worry that I have cancer right now? I don't know, I am confused. Am I not worrying enough? Am I in denial? Am I being careless with such a huge life altering decision? I guess you'll never know how you react to news like this until you get it. Knowing the fate of your future is a odd information to have. We aren't supposed to know our fate...right? Like in the Back to the Future movies, (LOVE those movies) if we know too much about our future it can change the path we are on, or even interrupt the "space-time continuum", ha ha. Is this any different? How much different will my life now be knowing this information? Will it be for the better? Or worse?

What about my sister? Should she find out? In my mind knew it was better for me to be the carrier if it had to be one of us, though I know her chance of getting it is the same as mine. I am in a different place in my life and I am not sure knowing this in your 20s, unmarried and without children is the best plan. But if it were me, I don't know what I'd do.


I am glad my reactions to this are surprising to people and it makes them assume I am so strong. But what if I am not? What if I just keep telling myself I am not scared to mask the truth? What if deep down I am terrified? I just don't know. Maybe after the news settles in a little I'll be more in tune with my feelings. I just know bottling them up and not talking about them isn't helpful which is why I know this blog will help.