PREVIVOR: A person who is not diagnosed with cancer, but has survived the predisposition, or higher risk, of cancer due to a genetic mutation and/or strong family history. After being armed with this information, a previvor can make informed choices prior to a cancer diagnosis.

Thursday, October 2, 2014

A Look Back

When I first was diagnosed with Cowden's Syndrome, I was almost ashamed of it. My entire life, while I was going through medical problems I felt like an outsider...this was basically going to seal the deal.

As I started going to doctor's appointments, I'd have to spend a good 15 minutes explaining what Cowden's even was. I guess I'd talked myself into believing it simply wasn't real....if doctors hadn't heard of it it must be fake right?

Then I started getting lump after lump in my breasts...and two very real breast cancer scares at the old age of 27. The doctor kept guiding me towards a mastectomy (he was strongly recommending it but emphasized it was my decision.) Part of me wanted to simply run away and never see that doctor again. If I ignore it, it'll go away right?

But I didn't. For the first time in my life I actually made a decision for myself. (And trust me, I tried to get other people to make it for me). However, this was something I had to do on my own. And the they history.

I'm 30 years old now and my mastectomy is merely a memory. A distant one at that. However, I feel like the very essence of being a previvor is engrained in my personality now. Making the decision to have a mastectomy was a hard, gut wrenching, soul searching one. But I did it. I took control and I did it. I wouldn't be the person I am today without having had made that decision.

There are days when I don't even think about my mastectomy. Week even. But there are women out there who are just now beginning this scary journey. Women who are a lot younger than I was. Preventative surgeries aren't for everyone. I always say getting your genetic test results is just the beginning. Now, you have the information and you decide how to use it. These women still need support. A place to go and ask questions, cry, laugh, vent without people thinking their crazy. (I'm having a flashback to a few weeks after my surgery and I'm sobbing uncontrollably. Mike is looking at me with a horrified look on his face and I'm insisting I don't know why I'm crying.)

During my surgery the FORCE message board was my rock. Those women were all significantly older than me, but I couldn't have done it without them. As I started to recover I saw a posting about a new Facebook group starting called Young Previvors. I was almost done with recovery, but I figured I'd check it out.

Needless to say, that group has become like family. I help admin a smaller sister group and offer help and insight where I can.

Starting this journey is hard. Staying the course is hard. This place will be a lifesaver because you can't go it alone.

For the rest of my life, I'll feel as if I'm connected to these women, this cause. I am and always will be a Previvor.  I'm a strong woman, capable of making the hard decisions. I am proud of myself for how far I've come, and can't wait to see where me and my 3 year old foobs go next!

Tuesday, February 11, 2014

Guest Post

Every now and then I'm contacted by someone who has seen my blog and wants to contribute content they think would be beneficial to my readers. Below is a contribution from Dr. Sheryl Pilcher, a plastic surgeon in San Antonio. Even if you're not near the San Antonio area, its a good comprehensive overview of the tissue expansion process. Enjoy!!

What Breast Reconstruction Patients Can Expect During Tissue Expansion

If you have undergone, or plan to undergo, a mastectomy, your plastic surgeon, Dr. Sheryl Pilcher, will begin your breast reconstruction with tissue expansion. She will start the process during your mastectomy or can begin after a wait period of several weeks, if your oncologist recommends additional treatment. Before she can rebuild your breast, she must first insert a tissue expander under your breast muscle to make room for your final reconstruction.

What Is Tissue Expansion?

Tissue expansion is a technique used by a wide variety of plastic surgeons. For breast reconstruction, it begins with the surgical placement of a tissue expander, which your plastic surgeon will manually fill over time. The slow expansion of the device stretches your skin, but it is not simply a stretching mechanism. This also signals your body to develop additional skin tissue to accommodate the growth within your body. Expansion provides the extra skin needed to reconstruct breasts, either with implants or tissue from your own body, after a mastectomy.  

The Procedure

Either during or after your mastectomy, Dr. Pilcher will surgically insert a silicone balloon beneath your skin and breast muscle. The expander is built with a port through which Dr. Pilcher can place saline solution to fill the expander. The expander also includes a catheter and drainage tubes. Your plastic surgeon will use the catheter to administer local anesthetic, while the drainage tubes remove excess fluids. You may feel some pressure during the saline injection, but your surgeon will closely monitor your sensations to ensure minimal discomfort. You will need recovery time after the procedure, such as avoiding heavy lifting for approximately six weeks. However, you will not require recovery time after your weekly fill appointments. While you may return to your daily activities, if discomfort occurs, you may treat it with ibuprofen. Your expansion process will last up to six months, or until your surgeon determines you are ready for the next step in reconstruction.

What Types of Sensations Can I Expect?

Every patient responds differently to tissue expansion, so there is no one set of potential sensations or treatment period. Following stretching exercises provided to you by Dr. Pilcher will help improve your comfort. However, consider the following common effects of tissue expansion, so you feel informed and know that your sensation is normal:

·         You may experience discomfort within the first few days after your saline expansion

·         Your chest may feel tight – this sensation typically goes away with time

·         Shoulders may feel stiff

·         You may experience mild pain in your back

·         Skin may become dry – apply a gentle moisturizer, avoiding your incision

However, if you experience any addition swelling, bruising, redness, fever, or unyielding pain, contact your plastic surgeon immediately.

About Sheryl Pilcher, M.D.

Dr. Sheryl Pilcher, your board-certified, female plastic surgeon, has practiced plastic surgery in San Antonio for over 15 years. An honors graduate of Temple University, Dr. Pilcher trained in Plastic and Reconstructive Surgery under internationally renowned teachers at the University of Virginia, and focuses her services on breast surgery, body contouring, and facial rejuvenation techniques.


Thursday, August 22, 2013

And...we're done

Yesterday I FINALLY had the final stages of my breast reconstruction. I had my nipple tattoos and my last dog ear cut off. When everything settles and heals I will FINALLY be complete! I feel like this entire process has always been in the back of my mind. Even though I haven't been near as immersed in the whole recon process as of late, it's always been in the back of my mind. Everytime I'd get undressed I'd look at my blank chest and feel a little odd. Like they're mine, but not. Now they'll look almost natural! I'm glad I can finally put this entire process behind me. But..not. I still want to be involved, in whatever way I can, with helping women who are going through this. I will never forget how scared I was when I was planning my PBM and recon and I don't want any women to feel that way. I feel like that God has allowed me to go through everything I did, so I may help others go through it. A lot of girls who have finished completely close their blogs. I still keep this one up and running, simply to update from time to time with things I think are interesting or pertinent to the HBOC community. For now, I'll leave you with somethings I've learned throughout this whole journey  
1- Be flexible. I started out with a clear cut plan of how things would go and boy did it ever go the complete opposite. Don't be afraid to change what you want or the timetable you want it in. Heck, I didn't want nipples and now? I'm SO glad I have them.

 2- Everyone is different. Every story, every journey. Just because someone is saying something was wrong for them, does not mean it's wrong for you. Sometimes, when women try to support each other, they end up trying to tell people what to do. Don't listen to it and go with your gut. YOU are the one who has to live with it!

 3- Please please please seek out support. Online, locally, whatever. This is a hard process to go through and no one can do it alone! It's me.

 4- Don't be afraid to tell your family and friends. You might be scared of what they'll say, but their reactions might surprise you (in a good way).  

5- That being said, there are some hateful people out there who think they can tell you what to do with your body. That's no bueno. Also, there's well meaning people who say things that you might think are offensive but they're really just trying to be supportive. Feel your emotions, definitely. But know that some things, come from a good place.

And like the Duke (John Wayne says):
Courage is being scared to death, but saddling up anyway
I found this picture on the internet and I think this about sums up my situation. See you next time!