Five Things NOT to Say & a Few to Share

Below are five things not to say to a woman pre or post mastectomy. No doubt everyone has much to add to this list. These are just the five that stand out for me. Please know that if you have already said any of the below to me or another woman in a similar situation, it’s okay. Really. I’m typing with a smile on my face grateful for the incredible community that supports me - even if you say the wrong thing.

Please just take heed.

“You’re so lucky they caught it early”

On a daily (if not hourly) basis, I can count my blessings and curse my diagnosis. Having a breast cut off and a few lymph nodes removed; facing an 8-inch scar every morning in the mirror, the shower, while changing; dispatching a good portion of a wardrobe that will not accommodate a prosthetic breast; a daily medicine that has thrown my body into all sorts of unrest; the constant, niggling fear of recurrence in the back of my head; uncomfortable, over sensitized skin on the back of my arms and chest - none of this feels particularly “lucky.”

I am absolutely grateful because things could certainly have been worse but lucky would have been winning Powerball.

“Well now you can just get bigger ones”

You know, buying bigger breasts has always been an option. And the path to augmentation is certainly a lot less complicated because it’s a choice made without the addition of a cancer diagnosis. Results could be considered a whole helluva lot more aesthetically pleasing when individuals end up with a nipple in place and without a diagonal scar across your chest.

What is available to me is not augmentation but reconstruction. 

Rebuilding what has been taken away. 

Less fun.

Anything that starts with “my friend” and ends with “she died”

While this should be common sense, I have heard it multiple times from multiple people. 

But I get it. You want to show me you understand so you start with a story to help illustrate this understanding but, as you walk through that story, you realize the ending is less than stellar and certainly not something to share with a woman who is walking a similar path.

Just stop yourself. 

Just stop. Cough. Sneeze. 

Excuse yourself to use the restroom. 

Just don’t get to the part where you say, “The cancer came back and she passed away.”

This is so not helpful.

“Losing a breast is so much easier than radiation”

This came out of someone’s mouth. Really. Funny thing is, she didn’t have cancer, never had a cancer diagnosis, had two natural breasts and had never had even one session of radiation.

Seriously. WTF?

“You’re strong, you’ll be fine”

This is, without a doubt, the most well-meaning of the no-nos. 

Please know this: I am strong but I don’t always feel that way. Please let me be a blubbering mass of fear for a few minutes a week.

And then be there with a hug.

I may well be fine but some days it doesn’t always feel that way. So please remind me that I am strong and that, when I’m not feeling strong, you’re right there to hold my hand and hug me tight.

Again, if any the above has slipped past your teeth's barrier, it’s okay. Just remember that sometimes (most times) the best thing to say is what you really mean:

• “That sucks.”
• “I don’t know what to say right now but I’m thinking positive thoughts and hoping for the best of everything.”
• “I wish this weren't happening to you.”
• *hug*
• “I love you.”  

Moms and Daughters & Sharing Breast Cancer

Sometimes my mom and I joke we’re sharing a singular breast cancer experience, separated by 1600 miles. In reality, we each received a breast cancer diagnosis of our own but together we’ve just about run the gamut of available treatments.

My mom’s breast cancer was found in January 2013 in her right breast after a self-discovered lump sent her to the mammography clinic. A needle biopsy confirmed cancer.  A lumpectomy confirmed Invasive Ductal Carcinoma Stage 2B. An additional lumpectomy was performed to get clean margins. A sentinel node biopsy found ‘a few’ cancer cells.

My cancer was found in my left breast after my first mammogram in May 2013, a month after my 40^th birthday. An excisional biopsy with wire localization confirmed diffuse DCIS. A mastectomy confirmed the DCIS as “everywhere” with two bonus tumors of InvasiveDuctal Carcinoma Stage 1B. A sentinel lymph biopsy showed cancer cells; an axillary node dissection was clean.

My mom’s cancer is E+/P- and HER2+. She began the first of four infusions of the Adriamycin/Cytoxan cocktail via a chest port in April. She began four infusions of the Taxol/Herceptin cocktail in June and will now continue on Herceptin infusions for a year. She’s had the port replaced once already.

My cancer is E+/P+ and HER2 -. I was given the choice of taking an Adriamycin/Cytoxan/Taxotare cocktail or trying out the OncotypeDX test to determine whether chemo would even be helpful. Oncotype testing in kinda like golf – low scores are good scores. I scored a 13out of 100 which means chemotherapy would provide little to no additional benefit to keeping my cancer from returning. Effectively, I dodged the chemo bullet and started on Tamoxifen.

My mother begins radiation in a few weeks.

There is nothing left to radiate on me.

My mother will be tested for the BRCA 1 and BRCA 2 mutations in late August.

I have already tested negative for both mutations.

My mother still has two breasts but her right one is missing a chunk and her head is bald.

I have hair down to my mid-back and a gorgeous 8-inch scar where my left breast used to be.

My mother still has a long treatment road ahead.

I feel great and I have declared myself “over breast cancer” (although there’s a longer story to be sure).

For the first few months of my mother’s breast cancer battle I tried to support her in a more overt manner. I flew to Texas for a couple of weeks after her surgery, she flew her to California for a couple of weeks before she started chemo, I flew back to Texas after chemo started and we did the hair dyeing (for me)/head shaving (for her) thing.  I am now looking forward to leaving breast cancer patient mode behind in favor of going back to the role of supportive daughter.

Together my mother and I have run the gamut of breast cancer treatment options and the experience has been difficult (at best) for each of us not only as women but also for each of us in our roles of mother and daughter. Most days I believe she got the short end of the sharing breast cancer stick.
And then I understand. 

She is my mother and isn’t it just like a mom to pave the way for her baby girl, hold her hand and take the worst of whatever blows their way?

I think about this and am alternately grateful and terrified.

Grateful as a daughter for the hand to hold.

Terrified as a mother, thinking of my own daughter and looking toward her future.

**************
Thanks Mom.
This summer sucked but you took the brunt of it and showed me that the best way to deal is with my chin up.
I love you.

NEGATIVE: No Clinically Significant Variants Detected

The paper came with the words: NEGATIVE: No Clinically Significant Variants Detected.

And my entire body let out the breath it had been holding for nearly four weeks.

The intense stare down and verbal warning from the genetic counselor came with “We don’t know everything yet. You must be vigilant. Based on your history, you still have significant inherited risk.”

And my entire body screamed, “Get me the hell outta here so I can cry without abandon. And then celebrate in similar fashion.”

And I did.

If I already have a breast cancer diagnosis, why did I subject myself to a month of anxiety ridden waiting?  Two reasons.

My daughter and my son.

Genetic testing for breast cancer is nascent but there are two genes which consistently, when found to have mutation, can indicate significant additional risk of developing breast cancer: BRCA1 and BRCA 2.

A positive result would not only have indicated a risk five times higher than average for developing breast cancer* and an increased risk for developing a variety of other cancers (that I mentioned in the last post) but also, most ominously, the terror and guilt knowing that I may have passed a similar risk onto them.

A positive result would have meant removing the other breast. And potentially another surgery to remove my ovaries. But more surgery and increased diligence pale in comparison to the weight of knowing you may be walking a path that you have unknowingly created for your child. And now I don’t need to worry about that for a while.

In fact, as I told my husband, through happy tears of relief on the drive home, “So, if they’ve got any genetic abnormalities, it’s on you!”

He glanced over and we both laughed because my husband appears to be composed of illness-proof shark DNA and has been to the doctor exactly three times in the almost 20 years of our relationship.

There are still questions and there may be a few more surgeries but, for now, I’m intent on celebrating what feels like a victory because, in layman’s terms, I am not a ticking time bomb of cancer risk.

Not that anyone can detect at this point.

*ACS Fact Sheet

Please Send 'Negative' Thoughts

Channeling all my ‘negative’ thought.

Tomorrow afternoon we sit down with a genetic counselor and a psychologist for the big BRCA reveal.

Four weeks ago, I donated a vial of blood so a lab could determine whether or not I carry a mutation in either the BRCA1 or BRCA2 gene. A few months ago I may have had to explain genetic testing in gory detail but, thanks to the very public conversation that Angelina Jolie’s positive test result and ensuing prophylactic double mastectomy initiated, there is a good chance everyone now knows that the BRCA1/2 genes have been identified as tumor suppressor genes and that mutations in those tumor suppressor genes can prevent them from doing their job effectively.

In my own break-it-down-so-I-can-understand words:

Normal cells replicate. Normal cells can sometimes mess up their genetic code when replicating. This mess-up is considered a defect. Tumor suppressor genes are designed to clean up these imperfections. Without effective tumor suppressor genes, flaws proliferate. As these defects amass, tumors can form. This is bad.

Geneticists worldwide would now be poking their eyes out at my oversimplification.

Anyway, test wise, a positive BRCA1 and/or BRCA2 result would indicate a higher average risk of developing breast cancer.

But that’s not all.

In addition to breast cancer, mutations in the BRCA1 and BRCA2 genes can also increase the risk of several other types of cancer.

·        BRCA1: fallopian tube cancer and pancreatic cancer;

·        BRCA2 : ovarian cancer, fallopian tube cancer, prostate cancer, pancreatic cancer and skin cancer (specifically melanoma).

So tomorrow I find out.

If I’m positive for mutations in either gene, there are decisions that need to be made. 

If I’m negative for mutations in both genes, I’ll be taking a deep breath and trying to put a bow on what will be forever known as ‘worst summer ever’ according to my family.

Either way, tomorrow is significant so, if you’ve got any negativity to share, please send a few ‘negative’ thoughts my way.