Things to Never Say…

To Someone Going Through a Double Mastectomy…

When I started opening up to friends about how my genetic testing results came back and I was positive, I got mixed reactions. From that day on, I used it as an educational means instead of getting upset. Do things still bother me?  I realized there were plenty of ignorant and stupid people who didn’t care to fully understand or listen to what the “diagnosis” meant.

I don’t think the comments were meant to be hurtful. But, they can be especially when someone is about to embark on an extremely stressful, emotional and unknown journey. Like I’ve said in a previous post, the comments weren’t a reflection of me; it was a reflection of those that said them.

So, let me educate you on what NOT to say to someone watching a sister go through breast cancer and someone about to go through a preventative double mastectomy due to being BRCA1 positive.

1.) “How cool!! You get a free boob job and can choose your size now. Most dream of this and you get to make it a reality.”

Society is obsessed with breasts. I actually was very content with my boobs. In fact, it was one thing I really loved about my body pre-surgery. Why does a double mastectomy get associated with a boob job? It is far from it!

Want to know the costs of everything so far?

Genetic Testing (single site analysis) – $413
Mammogram – $2,000
Breast MRI – $5,000
Consultation with Plastic Surgeon – $ 386
Consultation with Breast Surgeon – $760
CA-125 Blood Test – ???
Transvaginal Ultrasound – ???
Surgery – I received my insurance statements the other day and went into shock – $70,000 for my surgery on 9/10. I haven’t even seen the rest of the stuff for my hospital stays or follow up appointments post-surgery!

Did I miss anything? Probably!

My sister’s cancer treatments (no “boob job” included) costed her insurance well over $500,000. Two months of chemo alone were $260,000.

This is a free boob job? Think again! My out of pocket expenses have been well over $3500. No, a boob job would be breast augmentation where they put an implant in to bless the bosom. Mastectomy and Reconstruction is taking everything out, and using an implant to put between the pec muscle and skin. That isn’t viewed by me as an enhancement! Oh, and I get to choose my breast size? Umm…I’m very limited on my selection based on my skin’s “sheerness”. If I go too big, I have a chance of the implant popping through the skin or the nipple getting messed up. Cosmetically, there’s only so much the doctor can do regarding size. I don’t need Pamela Anderson sized boobs, but to go back to what I was (or what I was before fitness) would be nice.

2.) “It’s just a surgery. I know plenty of people that have had torn ACL’s get fixed or tumors removed via surgery. You’ll bounce back just fine.”

Thank you for trying to make me feel better about the surgery. But, I’m sorry, there’s no comparison from one surgery to the next. A tumor is removing just that, a growth. I cannot diminish someone else’s surgery based on my personal surgery (and one coming up). Perception is reality.

3.) “It’s completely your fault and you brought this on yourself.” I had some extreme people say I needed to quickly get married and have a kid so it would reduce my odds of getting breast cancer. Ha. Not happening! I had people blame me for sitting in a tanning bed for years in college.

Right. Ummm, really?! The last thing I needed to hear was this. Do you point the finger and blame a child who has leukemia or brain cancer? It’s not their fault!

How can I shut down an already faulty gene/DNA? Let me just go flip the switch to off now that I know I carry the BRCA gene. Duh!! There is no off switch!!

According to http://www.Cancer.gov, “BRCA1 and BRCA2 are human genes that produce tumor suppressor proteins. These proteins help repair damaged DNA and, therefore, play a role in ensuring the stability of the cell’s genetic material. When either of these genes is mutated, or altered, such that its protein product is not made or does not function correctly, DNA damage may not be repaired properly. As a result, cells are more likely to develop additional genetic alterations that can lead to cancer.”

Following? Let me try and break it down on simple terms. Every cell contains genes. Those genes are the blueprint/instructions for your body and contain information for how the cells in your body grown, divide, and die. My DNA is damaged and cannot repair itself no matter what! My instruction manual was faulty from the start (birth) and causes faulty cell growth and function. If there’s an error, my body doesn’t know it or have the chance to attack the faults like someone else who doesn’t have the faulty BRCA gene. My instruction manual keeps making copies with the same continual errors. Eventually, the cells rapidly grow (because BRCA1 is extremely aggressive), and eventually turn to cancer. My body has no way of shutting them off or knowing. It’s like cheating on a test and copying the answers off of the person next to you…if their answers are wrong, so will yours. How do you know they’re wrong from the get-go?

Everyone has the BRCA1/2 gene. The function of the gene is to repair cell damage and keep breast cells growing normally. When the gene contains mutations or abnormalities, the genes don’t function as their intended purpose.

So, I brought this on myself? It’s my fault?

4.) “You can completely avoid the gene turning cancerous by eating healthy and exercising regularly.”

I’m going to completely avoid this topic of conversation. Go back and read #3. My aunt is (and has always been) extremely active, healthy, and into fitness. She got cancer at 38. I know some freaking amazing and fit people that have gotten cancer. Their fitness and eating healthy didn’t prevent cancer from making an appearance!

I’m an exercise and fitness junkie. My pathology report came back after surgery with atypical cells in both breasts. How does working out and eating healthy prevent those atypical cells from turning into the next step, cancer??

Bottom line: Cancer strikes at anyone no matter what the age, gender, race, fitness level (or lack thereof), or whatever you want to fill in the blank with.

5.) “You’re broken”

Don’t make me feel like I’m broken. There are SOOOOO many emotions that come with the territory of a double mastectomy. Being told I’m broken doesn’t help anything. I am far from broken. I may not be able to have a kid of my own, but that doesn’t make me broken. Don’t make me feel bad because I removed my breasts and down the road I’ll have to have a oophorectomy or hysterectomy to reduce my ovarian cancer odds.

I’d be lying if I said my spirit isn’t broken at times when people have said hurtful things or tell me I’m letting my emotions get the best of me. I’m weathering the storm that was given to me. Good thing emotions aren’t facts. I’m already hard on myself. I don’t need to hear this kind of comment!

6.) “You’re not right with God or a true Christian. He must be judging/punishing you and this must be His way of getting your attention.”

This one is the icing on the cake. One lady had the audacity to say that my sister shouldn’t be using modern medicine to heal her body and should be letting God heal her. If God wanted to heal her, He would. If God wanted her dead, He would take her. She went on to say that God has a plan and that I’m playing God by being proactive.

I walked away pissed and let my friend handle that one!! She had no clue about me personally and how I was doing the surgery in a few days. How am I playing God? God gave us modern technology and one day I’ll stand before him accountable for every word I said, action/reaction, etc etc… If I did nothing and got cancer, I could only blame myself; not Him. He gave me the knowledge and tools to be proactive.

Everyone is entitled to their own religious beliefs. I’m not going to shove mine down your throat, and you shouldn’t shove yours down mine. That lady said that if she got breast cancer, she would wouldn’t do anything and let it play out. That’s her choice, not mine. Do I think she’s foolish? Yes, but that’s my opinion. I understand those that have reoccurring cancers get to the point where they can’t fight anymore…Their body cannot take another dose of chemo or treatments. It makes me sad when there’s nothing more that can be done.

7.) “Get over it. It’s not that big of a deal. You don’t have cancer.”

You’re right, I don’t have cancer…yet! But my odds are 87% chance of getting breast cancer in my lifetime (now 10% risk), 44% chance of getting ovarian cancer…oh and on top of that I’m at an increased risk for pancreatic cancer, Melanoma, and thyroid issues. I’m not living in fear. I took care of the highest risk right now and am not ready to move forward with a hysterectomy or oophorectomy. But, I will, eventually. I’ll come to terms with it on my own, just like I did with having to remove my breasts.

8.) “At least you’re being proactive and saving the Ta-ta’s”

That slogan bugs and annoys the crap out of me. No, it’s not about saving the Ta-ta’s; it’s about saving the women behind them. It’s about saving my life. It’s about saving my sister’s life.

Save the Ta-ta’s, Second Base or the Hooters are cute, sexy slogans. The primary concern should be removing the cancer or potential of cancer from the body, whether it’s a single or double mastectomy. I didn’t look at my doctors and ask them to save my breasts. BRCA1 gene puts me at such a high risk and backs me into a corner. Sarah was backed into a corner by having cancer. Her only option was a double mastectomy. BRCA1 is extremely aggressive and removing one breast puts her other breast at such high risks also. If cancer came back, it would come back with a vengeance and be even more aggressive. I really only had a handful of options: 1) Move forward with a double mastectomy 2) do active surveillance 3) do a chemo preventative treatment drug for a period of time… oh, and of course there’s the do nothing, too…but, I don’t consider that an option. That’s turning a blind eye and ignoring it!

Either way, whether I proactively removed my breasts or cancer did it for me, I had to do something. I am constantly reminded of what’s under my shirt. My body image has changed. My new norm is different. But, that’s completely okay – I’m alive and healthy!

I’m sure there’s some reading this thinking, Lighten up. Yes, those slogans raise awareness, but I care. This disease took my friend’s mother’s life a few weeks ago. It killed my Grandma. My aunt and sister have gone through it. It ruined some friend’s marriages. It destroyed families and lives.

9.) “Now that you’ll have implants, will you be doing a show and tell? I’ve never seen or felt fake boobies before. Maybe I have but just covered up ;)” or “I’m sure A LOT of people want to see your new boobies as well. BOOBIES!!!!”

Yep, I’ve been asked this numerous times and mostly from guys. Guys are pigs and going through this has showed me that even more. Thank you for treating me like a piece of ass. No, you cannot get to second base!!!

Ok, you want to see fake boobs and implants…here you go…two options:
1) Pick up the latest porn magazine and you’ll see plenty of fake boobs. (no, I don’t actually suggest this. I hate porn and what it does to guys, relationships, etc…)

2) There you go. You’ve seen fake boobs…

Implants

The only people that will be seeing these tits are breast cancer patients and those going through a double mastectomy…I’ve already told my doctors they could use my before and after photos for their slideshow for patients. If what I’ve gone through can help them, by all means, go for it. Now, my face or name will not be attached, so it’s all good!

Guys have come back apologizing and saying they were kidding, but it isn’t even something to ask or joke about. Don’t even follow those comments up with, “You look great in your recent pictures online…but ok, I get it.” Why yes, on the outside no one would be able to notice, but, I notice it every day and see what they truly look like.

Sidenote: those guys that have said these things have been kicked to the curb. You can’t respect me as a woman, you don’t deserve my friendship! Yep, being blunt! LOL

10.) “They’re just boobs and can be easily replaced?”

Are they just boobs? Wait for my next blog post!!

Why yes, my implants will need to be replaced in about 15 years!!!

DSC_8260E1

One of the many pictures my sister took of me the day before surgery. Makes me sad and nervous sharing it!

These are things that have been personally said to me. I’m sure if I asked others in my same boat what was said to them, they’d have different things to list.

My words of advice: Think before you speak. Please don’t say some of the above things to someone you may come across in the future that’s dealing with this. I stopped talking about my faulty gene and surgery to the majority of people based on reactions and comments. I had my select few people and they were the only ones I discussed things with.

If someone shares and opens up with you, be that listening ear. Let them know you’re thinking of them. Encourage them. Love them. Support them. Be there for them. Drive them to appointments. Bring over food. Care for them. Don’t walk away. Show them compassion and respect.

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