Not much for news!

I saw the general surgeon who will do the mastectomy part of my surgery. She (and her resident) were GREAT! Super sweet and nice, very reassuring, and I've heard really good things about her as well (always a good thing to have connections!). Nothing to new and exciting from their standpoint. Incisions won't be as big as I had thought so thats a good thing!

Basically the only decision I need to make on their part is nipple sparing or not (with reconstruction later). They think it's safer now but since its a newer procedure, they won't really know for another 10-15 years how safe it really is. I'm leaning toward not doing nipple sparing since it may increase your risk of breast cancer and if I'm doing this big of a surgery, why wouldn't I do everything to decrease my risk as much as possible. And with my radiation, they aren't sure its even an option so again something that plastics will need to discuss and help decide on as well.

I also met with the educator in plastics who educates you on the different reconstruction options so that when you meet with plastics that you know what they are talking about and then plastics talks to you about what your specific options are.

I see plastics Thursday afternoon and so then will hopefully have some answers!

Otherwise just kind of in a holding pattern! Surgery is scheduled for the 9th and I will more than likely be first case since it will be long (around 7 hoursish). The day before I have to go in for a nuclear medicine injection. In surgery then they do a scan to check to see if any lymph nodes light up or are suspicious for any type of precancerous cells in which case they would take those lymph nodes too. They aren't expecting to find anything though since my scans were just all clear!

Still waiting on insurance clearance as well. Hoping to hear something in the next few days!

Questions!

Well I got the garage mostly clean last night minus finishing sweeping and a few random things to still put away! It actually didnt take too long! Later this summer we will get a little storage shed and that will definitely help with our garage space (or lack there of). My friend Lindsy and I went to look at freezers and lucky for me the one that I looked at last fall was on SALE! 80$ off! So I bought it and we set it up last night. I settled on a smaller upright and its perfect!

A lot of friends have been asking a lot of questions about my upcoming journey so I thought I'd share a few of them...

• How many night stay at the hospital? 2-3 nights depending on if they can get my pain under control and there aren't any complications (which there wont be!)

• How long will the recovery take? It depends on what surgeries they end up doing... should be about 6-8 weeks. If they have to do the hysterectomy open instead of robotic, then I'd have a 7 inch incision on my abdomen which would not be the most fun thing in the world. I've heard that the tissue expanders are the worst part since they are stretching the muscle.

• Do you get to pick your "size"? Not sure yet! Depends what plastics says, I see them next Thursday. I'd like to be a full B but its not a deal breaker if that doesn't happen.

• Will "they" look normal? Eventually! It depends what plastics says, what they want to do, what they think will look best and if an additional surgery etc is necessary.

• What can I do to help? Still not sure and probably wont know forsure until I see how it goes after surgery! Once I am feeling better, visitors would be great! I'll go stir crazy being off work for that long! I'm sure the kids will need to go to the park so think of Jared for park dates too! Freezable meals for the kids and Jared would be a great help as well!

I really don't know much more at this point. Next Tuesday I see the General Surgeon who will do the mastectomy part and Thursday I get to see Plastics which will be a relief since they call the shots and they are the last ones I get to see! I'm still waiting on insurance approval so say a prayer that they cover it without extra letters or anything!

We have a little family fun weekend planned so I am hoping that the weather turns around and is nice out or we'll have to find more indoor activities! And then next weekend will be cleaning, cooking, and getting things ready!

If anyone else has other questions, let me know!

Thank you ALL for your love and support. I am SO blessed to have such wonderful people in my life!

Support!

Thank you to all of you who have emailed, called, posted, facebooked, and texted offering support! I'm going to need it (both figuratively and literally!!)!

I've been able to talk to two different people here in town who have had mastectomies and reconstruction (one prophylactic, one due to breast cancer) and both have done really well. I've touched base with the CNS on the unit that I will be on who was great and gave me a more realistic picture of the post op time. I've learned from a friend from a long time ago that her family has the BRCA gene and they are going through similar decisions, I've talked to my dear friend who has started the trail of surgeries from being BRCA positive, I've talked to a friend who works in the breast clinic who has filled me in on what all of the options and terms mean. I'm a medical person but I know nothing about boobs or reconstruction! I've been reassured by everyone that this is a good decision and that I am in great care. Every one is just super supportive.

I guess I kind of figured people would be supportive but with a more controversial elective surgery I figured there would be those who would think I was crazy for undergoing such extremes but I haven't encountered that at all! Although when you put my two risk factors together, it doesn't seem elective at all but a necessity. Do it now and hopefully prevent it or wait until I am forced to do it because of cancer. I'm kind of a control freak :) so making it my decision is much easier!

I've done a lot of research online and am patiently or rather impatiently awaiting to see plastics since they have the most say in everything!

I'm getting as informed as I can get and snooping around finding out as much info about my surgical team as I can and have found that I have the best!... minus the resident that I've already requested not be on my team:) I don't want to be the complainy annoying patient but if you don't listen to me and intentionally scare me then I'm just not going to feel safe in your care and well off you go! Thankfully the surgeon is amazing and was totally understanding and has ensured me that the resident won't be in on the surgery and will keep my contact with her to a minimum during the hospital stay. Gotta be your own patient advocate right!

I did get some good news though... Sounds like the main surgery will be the mastectomy, partial reconstruction or full reconstruction, and the full hysterectomy. This is a good thing and means only 1 or two surgeries depending if plastics does direct implants or expanders. I'm assuming it will be expanders but will have to wait to see! Plus if Jared wants double D's the expanders will have to be in for a few years! (for those of you who don't know Jared well, he requested double D's and butt implants... I'm not sure that butt implants are part of the hysterectomy but I'll clarify for him!)

So surgery is scheduled for the 9th! I'm awaiting insurance approval which no one thinks is going to be an issue but you never know!

I've also had an outpouring of people asking what they can do to help. At the moment, I'm not sure! I know we will need some help but I'm not sure what at the moment.

We are going to go buy a freezer for in the garage which we have wanted for sometime and I'll start making meals to freeze. Recovery is estimated around 6-8 weeks and I'm guessing I wont be cooking for a good part of that since my chest and arms will hurt so if anyone is bored and wants to make a meal to freeze we won't turn away food and you can bring it by anytime!

Probably won't hear anything much now until next week but I will keep you posted!

Thank you thank you thank you for all the prayers and support! Its amazing knowing that many people care and are saying an extra prayer for me and my family!

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.