Moving Forward

Some of you are already aware of what has gone on the past week and a half and to others of you this may be new information for you!

In a nutshell, I'm having surgery... maybe 3 surgeries depending how much they can do.... A complete hysterectomy, prophylactic double mastectomy, and reconstruction.

So lets back the bus up a bit for the whole story....

At age 15 I had hip pain and ended up being diagnosed with Ewings Sarcoma (a rare pediatric bone cancer). Not exactly what I had planned for my high school years but you do what you have to do. I had chemotherapy for 3 months, then had an internal hemipelvectomy (surgery to remove part of my pelvis and reconstruct it with donor bone, plates, and screws) and then had 9 more months of chemo. A month after finishing chemo two spots showed up in my lungs. They watched them for a bit and one went away so wasn't anything and the other got bigger. I had relapsed. So had a thoracotomy (lung surgery to remove the tumor), radiation, high dose chemo, and an autologous bone marrow transplant (using my own marrow). So much for having a senior year in high school! But it was all worth it. I had many complications and random weird things along the way but I survived. I met many other teens my age who were fighting similar diseases and had too many friends get their wings way to soon. I am amazingly blessed to have been able to move forward and live life.

Fast forward a few years.... Around age 26ish I had melanoma insitu on my arm which was removed with an outpatient surgical procedure. I also had CIN 1 (precervical cancer) which was removed by an outpatient procedure as well. And have had some other random issues

Because of my treatments, I am at higher risk for other cancers; mainly breast cancer due to my lung radiation. I've always know this and had been started on yearly mammograms at age 25 and then added yearly MRI's at age 29.

This year something changed...

I had my yearly breast MRI & mammogram and the scans were clear! While sitting in the waiting lounge of the breast clinic waiting to see my provider, I remembered that I had a somewhat distant relative that died of male metastatic breast cancer and thought I should at least put that in my history. So I mentioned that to my provider and then we connected that his sister had ovarian cancer and how that was a super strong indicator of the BRCA mutation (the gene mutation that causes breast and ovarian cancer. The gene is also tied to melanoma which I've already had and thus there is a high likelihood that my family and thus myself has the BRCA gene. The breast clinic doc said that she didn't think even if I had the gene that it would change my risk much since i was already high risk from my lung radiation. She sent me to genetics, who told me the risk of breast cancer with the gene is 54-87%....87% YIKES! and the risk of ovarian 24-47%. Then i went and saw the breast clinic again and she said that my risk of breast cancer from the radiation was that high too (54-87%). Previous to hearing this, I for some reason had not asked what exactly my risk of breast cancer from my radiation, I just assumed it was like 15-20%... not 87%! So basically I have two strong risk factors with each independent of each other have a super high risk and no one knows what these two risk factors do together because there aren't many people who have both.... never good to be one of few but then again I tend to be a medical anomaly!

Basically this means that its really not a matter of if I will breast cancer but when and with having two little kiddos at home, I can't just sit around and wait. I want to make sure that I have done everything to prevent it as I could to ensure that I am here for them. Not everyone will agree with my decisions but I need to do what is right for me and my family. Even if it means having to put a stall on life for a while to get things taken care of.

So regardless of if I actually have the BRCA gene (I'm not being tested since its not changing the outcome), I would still be doing the same thing now knowing my real risk with my radiation.

Having surgery doesn't guarantee that I won't get breast or ovarian cancer but it will drop my risk to less than the general public and less than 5% depending what surgeries they do. But at least if I have surgery, if something happened far in the future, I will know that I did everything that I could.

So now tentative surgery at the beginning of June. Hoping to just have 1-2 surgeries but may end up being three.... So if its just one surgery it would be: Hysterectomy, prophlactic double mastectomy, and reconstruction. If its two surgeries it will most likely be hysterectomy, prophlactic double mastectomy, tissue expanders... second surgery would be 6-7 months later to switch out the tissue expanders for an implant. If its three surgeries it will be hysterectomy, then six weeks later double mastectomy and tissue expanders, and 6-7 months later would be reconstruction. It's pretty much in the plastic surgeons hands to decide what is the best for my body shape and what my options are since radiation damages the skin and tissue my options are a bit more limited and I'm pretty small so don't have a lot of extra fat for flaps. So until I see the plastic surgeon, things are pretty much up in the air!

I probably wont know much more until late next week but may not have final plans until the week of surgery. Its been a rough week (I almost killed a resident today but thats for another post) but its something I need to do if I want to be here for my two little kiddos!

I am completely open about this and more than willing to talk about it so if you have questions just let me know!

I've decided to chronical my journey via a blog to keep a journal for myself on what I have been through, to share my story, to gather prayers and support, and to be able to offer support to other "previvors".

I'm choosing to have a future with my family and leave my fears behind an although it will be a bumpy ride, at the end, my risk will be WAY lower and my family will have some peace of mind.