Thursday, November 14, 2013

BRCA1 Questions I Have Been Asked

On November 5th I decided to post this image to my Facebook status and let the world know that I am BRCA1+ (since only a small handful of close friends and family knew). What followed was....

An overwhelming out pouring of love from friends all around the WORLD! Hundreds of beautiful comments were shared with me on Facebook, and so many more private messages, emails and texts were sent to me with love, good vibes, prayers and kindness. I C-R-I-E-D and spent hours answering emails and listening to people share their story, their family history and answering questions.

In addition, each time I attend a gathering of friends, attend church or visit with long time friends I'm asked many of the same questions. I do not remember who I tell what to and certainly don't think I'm an expert, but I decided that my best form to answer those questions to many people all at once would be to post them here on the blog. I'm also hopeful that someone recently diagnosed with BRCA will find some information and comfort from what I am sharing here. 

List of Common BRCA1+ Questions:
(and some not so common)

1. When is your mastectomy surgery? 
December 9, 2013

2. What made you get tested for BRCA1? 
In 2010 my cousin was tested after her mom had been told she was BRCA1+. My cousin learned that she too was positive and they felt they needed to inform the "family" about it. Sadly they thought my father had contacted me about getting tested. Not knowing he was no longer speaking to me, my aunt and cousin learned in 2011 that I was never told about the test. So armed with their test results I asked my OB/GYN in 2012 if I should be tested and he didn't feel it was a worry for me (see number 2). It wasn't until a dear friend learned that I was considering being tested that she tracked down the contact information at Huntsman Cancer Institute for their free Genetics Counseling that I finally went up and was tested. The test required me to go through a "family risk assessment" session with a wonderful lady named Wendy (she's been one of my angels). Based on my family history she told me I qualified for the test, but she then explained to me on what that meant. Including my risk and options should I be positive. Then my blood was drawn and sent to a lab to be tested. It took about two weeks to learn my results.

3. You can't get "breast" cancer from your dad's side of the family, right? 
Wrong! BRCA1 proves that in my case especially. The BRCA1 gene that I have was passed to me from my dad and the family history on my dad's side of the family was what qualified me for the test. They did not care if it came from my mom or dad's side.

4. Why should men be tested for the BRCA gene mutation? 
Although they primarily "carry" the gene and pass it to their children it can increase their chance of getting prostate cancer by a small percentage. I wouldn't say that is a reason to be tested for a man, but in my brother's case he should be tested to find out if his daughter could be at risk. He is however waiting until his daughter is older before he is tested.

5. Is Dense or Fatty breast tissue more likely to develop cancer? 
This was a question I had no idea about, because as I've mentioned before I do not actually have cancer. However, I was curious at this question and thought I'd look it up. So according to the Susan G. Komen website it states, "Women with high breast density (as seen on a mammogram) are four to five times more likely to get breast cancer than women with low breast density."

6. Does your daughter have to be tested? And what does she think about all of this?
Yes she will need to be tested (as well as my son eventually) but she will not need to until she's about 25 years old. They do not feel it's medically necessary to have her tested until then and should she be positive they would most likely begin her mammograms early and increase to more radical screening until she's older. But since I'm positive she has a 50% chance of being positive and I am praying her results come back negative. As for what she thinks about all of this? She isn't worried about her getting cancer or being positive. But she is scared about me having this surgery. She doesn't know what I will be like and I think she's worried she'll have to help me out A LOT because her dad won't be here all the time. I assured her she won't have to help me shower or cook and clean all the time...her dad will step up (he better)!! And it is hard for her to not be able to talk to her friends about, they aren't interested and don't know she's scared and worried for me. But she does know I'm doing this so I can WATCH her grow up and become a mother and have my grand babies.

7. Am I having my hysterectomy/Oopherectomy or mastectomy surgery first?
A lot of BRCA1+ ladies choose to have the Hysterectomy/Oopherectomy first because the recovery is shorter. But because my insurance deductible and out-of-pocket limit almost triples in 2014, I decided, with my husband that having the larger, more expensive surgery in 2013 was going to work better for us. Merry Christmas to me!

8. Do I get to pick the size of my reconstructed breasts?
Of course, but other then knowing the "type" of reconstruction I'll be doing I haven't yet spoken to my Plastic Surgeon about size. We work "up" to the desired size over several weeks of doctor's visits (I'll explain more about that in another post).

9. Do they do the reconstruction later or at the same time? 
A little of both...they will do the mastectomy (remove the breast tissue) which will take the bulk of my surgery (up to 5 hours) and then that surgeon and team will leave the OR and the Plastic Surgeon and his team will come in and place temporary expanders behind my pectoral muscle and close me up. The overall surgery is expected to take 5-6 hours. I will then go through a series of weekly visits to expand (stretch out that muscle and make room) and then about 6-8 weeks later have a SECOND surgery where they will remove my expander and replace them with my implants.

10. Do I need to have Chemo and/or radiation?
No, because technically I do not yet have cancer. I sort of get to "skip the line" and go straight for the surgical option. And my friends and family that have gone through both chemo and radiation tell me they would do the very same thing to avoid going through it. I watched chemo eat away the man my father-in-law was and I would like to avoid that at all costs!

11. You are having a hysterectomy too? 
Yes and No. Many BRCA1+ patients opt for the full hysterectomy after talking it over with their OB/GYN. However, after I met with mine, we decided to only have what is called a Bilateral Salpingo Oopherectomy...aka having my both of my tubes and ovaries removed. I opted for the lesser surgery because it  resulted in less blood loss and shorter recovery. I figured after having to undergo the double mastectomy, that I probably would have had enough. I will doing this surgery on FEB 18, 2014...Happy Birthday to me!

12. Can I cast your before and after breasts for an art exhibit?
This question still makes me giggle. It was a serious offer from a local artist and although I was completely flattered, I will have had a lot people touching my breasts leading up to & following my surgery, so I passed!

13. Are you happy that you'll have perkier boobs? 
Honestly, I have to say this question annoys me a bit, but it entirely depends on the person who asks me. What most people don't understand is that I will no longer have any feeling in my breasts because they remove the nerves with the breast tissue. I will have a large "T" shaped scar running along my breast and no nipple. I've heard other BRCA1 positive peeps refer to their newly designed breasts as "Foobs" or "Frankenboobies." So honestly under my clothes I will be happy that they're pointing out, but in the shower maybe not so much. 

14. Does my insurance pay for these surgeries (specifically the reconstruction)?
Actually they do cover the cost of these surgeries including breast reconstruction. Of course I will still have my portion to pay for these surgeries and it won't be cheap. But for more detailed explanation of why insurance companies are "required" to cover these you can read more here, it tells about the Affordable Care Act.

15. Do I get to keep my nipples? 
I really do get asked this... Some BRCA patients are offered the opportunity to do what is called a "nipple sparing" mastectomy. However, I will not be able to. A lot of things affect this being an option, but lets just say that gravity has not been kind to my breasts and therefore in order to remove the breast tissue they will have to remove my nipples. So I will have what many before me have lovingly referred to as "barbie boobs." I haven't learned my nipple reconstruction options, but I have had others offer to donate theirs or we've talked about a big girls weekend in New Orleans for me to get 3D Tattooed nipples by the famous Vinny Meyers (yes really, he's famous among mastectomy patients...and YES they look 3D).

16. Do I need help decorating for the Holidays? 
 Actually no, I'm good. My kids are teenagers and can coach their dad on how to set it up. I am "that" mom who doesn't let the kids help decorate and this year it's all theirs. I actually think they are looking forward to it. I may decorate the porch and my little corner of the bedroom myself, because who doesn't love to have a Christmas Tree to aid in their recovery.

17. What is your address? 
Sadly I'm not going to post this to my blog. If you are a friend or relative that simply needs to update their contact info or send money (wink), please email me for that information. And of course if you know me, I'm not one for surprise visitors. However, I would love ANY snail mail love so you're welcome mail it to my work address at:
My Craft Channel
Attn: Lori Allred
1460 North Main, Suite 1A
Spanish Fork, UT

18. Am I Scared?
Absolutely petrified. From the moment I learned that I was BRCA1+ to this moment writing about what I've learned so far. No one fully understands what I'm experiencing except other "Previvors". And no matter how hard I try to explain the physical and emotional suffering I am experiencing, no one will appreciate the gravity of the situation. Most people have zero idea the depth and magnitude of what I am are going through unless they go through it for themselves. So I will close by sharing something a friend wrote me recently that I could not even try to express as well as she did....

"Be scared poopless. This IS scary. Cry. This will hurt. Curse. This will frustrate. Scream. This will infuriate. Ask; why me. That's OK. But remember; at the end of the day. This WILL improve your quality and length of life. Smile. This WILL enable you to attend your children's marriages. Laugh. This WILL enable you to hug grand babies. Love. This WILL enable you to deepen your love and appreciation for your husband, family and friends."
Whew...I think I got those all answered (and few tears were shed). Remember that their is a RESOURCES "tab" at the top of this blog post under the header that has helpful links to learn more about Breast Cancer, BRCA testing and information. But let me know if I missed anything. You can leave a comment below this post with any additional questions and I'll try to answer them the best I can.

1 comment:

  1. Wow Lori! This was a well timed post for me to find. My closest friend's mother was diagnosed this week with what appears to be breast cancer (still awaiting a final diagnosis) and lost her aunt last year to it. We have been talking thru this topic over and over this week. Thanks for being brave enough to share and help other women understand it!


HELLO....I appreciate you reading about me and my experience with BRCA1 and "everyday life". Thank you for taking the time to comment in the positive (but if you want to be negative I invite you to go read someone else's blog).