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Invisible in a corner

At a recent baby shower for a friend of mine, I walked into the dining room just in time to hear an acquaintance, an old drinking buddy of mine, say to my then-expectant friend: "I think it's so great you're having a baby.  It's so awesome that everyone in the group have babies now.  We all grew up together, partied together, and now we all have families.  You're the last of us."

I stared at this acquaintance - someone who I had spent many nights in the past getting drunk with - and felt like someone had punched me in the gut.  I stood there in the corner of the hostess' dining room, feeling not just invisible but enraged.  I debated whether or not to speak up, announce myself from the corner and say, "Well, not everyone has a baby, you asshole."  I also imagined flipping a table and moon-walking out of the room with my two middle fingers ablazing.  

Given that the day was about my pregnant friend, who was just radiating happiness, I just quickly left the room and realized that my decision to "lose" this woman's phone number well over a year ago was an excellent decision.  A true friend of mine would realize that I was in the room.

I'm 33 years old, and the odds of me starting my own family are pretty much slim to none.  Every day, I have to accept that fact and  learn to live a Plan B life since Plan A never came to fruition.  Breast cancer took my mother, and it likely took away my ability to ever become a mother.  Before you might think, "You can just adopt," just don't.  Adoption is just as expensive, long and drawn out, and many places have restrictions for people like me - former sickies.  

Before I began chemotherapy, at the recommendation of my medical oncologist, I visited a reproductive endocrinologist.  I took some steps to safeguard my fertility, such as monthly Lupron shots, to minimize my chance of chemo destroying those parts responsible for babies.   In a follow-up visit with that same reproductive specialist, he told me that the Lupron worked, but so far nothing has happened on that front.

A question I have been surprisingly asked a lot: "Did you freeze your eggs?'  The answer: no.  My insurance didn't cover it, and I have yet to find that money tree (always looking, though.)  

Infertility is a common side effect following cancer treatment, not just breast cancer, for women in their child-bearing years.  According to an April 2, 2012 Time article:

Each year, more than 120,000 U.S. women under age 50 learn they have cancer, but only 4 percent of women of childbearing age who have cancer are preserving their fertility, according to a study published in March in the journal Cancer. The news puzzles advocates of oncofertility, and suggests that efforts to educate women about ways to safeguard their fertility need to be stepped up.

A March 26, 2012 ABC News piece stated:

Just as it is automatic for patients to consult with a plastic surgeon to discuss reconstruction after a mastectomy, [Dr. Mitchell] Rosen said fertility consultation should be a part of the process, as well. But, while reconstructive surgery is covered by health insurance, fertility preservation is not, and it can cost as high as $20,000.

Infertility in of itself is a horrible condition to go through when you want a child but your body fails you.  Infertility after a disease that completely changes your body and your world is just a whole bunch of a salt in a deep wound.  I know what it feels like to have my body to fail me, to feel like I was physically slipping away.   It would bring me the utmost joy in the world to bring life into the world.  That joy just hasn't happened for me yet.  Until then, I plan on being the World's Best Aunt for my brothers' awesome children.

I hope any friends or family members of mine reading this don't think, "Oh gosh, I shouldn't tell Lara about my pregnancy or the birth of my child."  Please, don't think that at all.  Tell me your good news, and never shield me from the goings on in your life.   I just hope that you (the general you) think about what you say around a woman without children or what you you ask her.


"When are you and [your boyfriend/spouse/partner]  having children?"

If you find yourself about to ask this question, stop yourself.  This is an extremely personal question that you shouldn't ask any woman, not just someone who has been through cancer treatment.  According to the CDC, 6.7 million of women between the ages 15 through 44 have the "impaired ability to get pregnant or carry a baby to term."  You don't know what's going on in a woman's life, and that question could just be a reminder of something very painful.  

Or a woman might not want to have any children, and your question put this person on the defensive, having to explain their life choices.  You don't want to defend why you had kids, so a child-free man or woman shouldn't have to defend why they didn't have any kids.  Just in general, don't ask that question.  When in doubt, don't be a dick.  

A great question to ask: "So what's new and good happening in your world?"

Now to make this all cancer-related, don't ever say this to someone who had recently been through treatment for cancer: 

"So now that cancer is behind you, are you thinking of having kids?"

No, no, no.  First, at least for estrogen-positive breast cancer, women have to take Tamoxifen for five (sometimes ten) years.  (I should have been one of those women, but due to the side effects of that medication, I stopped taking it after six months.)  Be aware that you may be asking someone who cannot and should not get pregnant about when they are going to start a family.  Also, that question may be dismissive of what they have been through - this person might not feel that cancer is "behind" them.

A great question to ask: "How are you doing?  What's new?"

Overall, just be a friend.  Notice that friend in the corner and be aware of what you're saying or asking. 

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If you were just diagnosed with cancer and you think you might want to have children in the future, then you should speak with your oncologist about your fertility preservation options. 

For more information about fertility options after cancer treatment, please visit Fertile Hope which provides "reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertiliy."  Cancer treatment is brutal and barbaric, so it's understandable to concentrate solely on the Now and not the Future.  If you want to have children after cancer treatment, then fight like hell to make that happen.  

Marie Rose

The next story comes from Marie Rose, another young woman diagnosed with breast cancer in her 20s.  She is proud to tell the world she has been cancer-free for three years.

Age and Diagnoses

Diagnosed with Stage 2 breast cancer Her2+.

Family History or BRCA positive

No family history and negative for BRCA.

Who caught it? 

I initially found it when I was twenty. I showed my mom and one of my sisters. They both said they didn't really feel anything and that it was normal. I have had irregular menstrual cycles and at 22.  I decided to finally see an OB. It may sound odd but in my family we do not believe in premarital sex so there should be no need to see an OB unless you were pregnant. I was not active but I wanted to know if it was normal to have irregular cycles and would this affect my ability to have children. Upon getting checked the doctor wrote the lump off as being a part of "puberty." I am not sure if it is because I have a youthful face or if this doctor was truly paying attention. Fast forward to me at 26 years old. My best friend told me that if I really wanted to have children that I should get checked out by an OB. She referred me to hers. At 26, I still had abnormal menstrual cycles. Growing up I was told it was because I was athletic. Anyway the OB gave me a routine pap with a breast exam. She found my lump and told me not to worry because it is probably nothing. She referred me to a surgeon just to be sure. I met with the surgeon and again was reassured that it was nothing. Two days after my lumpectomy I received the phone call that would and will continue to change my life.

What were the signs/symptoms? 

No symptoms--I just had an instinct that something wasn't right with my body.

Did your doctors listen to you? 

It is an ongoing issue with people in the medical field. They see tons of people and it is easy to slip into the cracks and become just another number. My doctors, however; were amazing. They listened to me and became like family. Being diagnosed so young I was able to give my doctor's insight on how cancer can affect someone at a young age.

What would you say to a young woman who thinks something might be wrong? 

I tell all of my friends and family to check themselves, know your body better than your doctors, and that early detection is key. It is your body and your life--treat it as a gift and take care of it as such.

Nicole

The next story comes from Nicole, and you can find her blog, When I Speak His Name, here.  If you click on the provided link, you'll find more details about what she has been through. 

Age and Diagnosis

I was 28 when I was diagnosed with Stage 3c invasive ductal carcinoma. [When I heard that her breast cancer diagnosis was stage 3c, I actually lost my breath.]  It was grade 2 Estrogen and Progesterone positive and HER2 negative.

Family History or BRCA?

My mom was diagnosed with stage 0 DCIS and after 2 lumpectomies without clean margins she opted for a mastectomy and they found Mucinous carcinoma.  My paternal grandfather on my had esophageal cancer and then 12 years later was diagnosed with breast cancer and he eventually died from cancer.  My maternal grandmother died from lung cancer.

So with all this family history my doctors were a little surprised when my BRAC Analysis came back negative. They held a sample back for the new BART (BRACAnalysis Large Rearrangement Test), but my insurance didn't cover it.  Six months later my insurance decided to cover it and they found a rare mutation on my BRCA2 gene.  It was surprisingly passed down my father's side of the family.  

Who caught it?

I was putting lotion on one morning after getting in the shower and rubbed the side of my breast from right under my armpit forward and had I not pressed a little harder than normal I could have completely missed it.  But it was in my right breast closer to my chest wall and it was big.  I remember calling my husband in and asking him to feel and I will never forget the look on his face.

Did your doctors listen to you?

I actually had to wait six weeks to go to the doctor for my insurance to become effective.  By the grace of God my company had decided after six months of me working there to offer insurance.  I love my doctor and I will never forget what she said, "Let's not worry until there's something to worry about.  It's a one and a million chance, but let's just be on the safe side."  During my chemo induced insomnia I actually did the math - it's actually 1 in 7.4 million.  But a week later I was in for an ultrasound and mammogram and thanks to an amazing radiologist My lump (which a new one had popped up so there were now two) was biopsied the next day.

What would you say to a young woman who thinks something might be wrong?

Be your own advocate.  I always worried that I was a hypochondriac when I didn't feel good, but in my heart I knew something was going on and I knew when I found that lump that it was cancer.  Had I been doing self exams I may have found it sooner.  I think as women, God gives us a special intuition that men don't have....It's why we make good mothers.  And it's that intuition that can save your life.  "Better safe than sorry" has taken on a whole new meaning in my life.  Had I waited much longer I would be talking to you now as a stage 4 cancer patient.

Jenna

This is Jenna's story.  To learn more about her and her story, please visit her blog.

Age and Diagnosis

Age 33 stage 2B invasive ductal carcinoma, estrogen and progesterone positive, her2 negative, grade 3

Family History or BRCA?

A great aunt was diagnosed at age 70 but no other family history. 

Who caught it?

I woke up one morning and brushed my fingers along the underside of my left breast. There was a large lump not too far under the skin. How could I have not felt this before? My heart stopped, I got nauseous, dizzy, and broke into a sweat. I had never had lumpy breasts and this lump was hard as a rock. 

Did your doctors listen to you?

I was able to get into the doctor that day. He assured me that it felt smooth and moveable so he didn't think it was anything, but he wanted me to have an ultrasound to be sure. 2 days later I had the ultrasound and a day after that I had my diagnosis. I am so thankful my doctors acted fast and didn't blow me off.

What would you say to a young woman who thinks something might be wrong?

Do your self exams. I never did mine because I incorrectly assumed that because I was young and had no family history, I was not at risk at a young age. My tumor was rather large when I found it. If I had done checks I could have caught it earlier. Please insist on an ultrasound if you find a lump. Insist on a biopsy if its determined to be solid. It's not the most fun I've ever had but its much better to know what you're dealing with and get treatment started than to ignore it. 

@Zapladybug

 Next up is @zapladybug's story.  

Age and Diagnosis

Age 38, invasive ductal carcinoma - stage 2b with one positive lymph node.  

Family history or BRAC?

My father had prostate cancer and my aunt (his sister) was diagnosed with Stage 0 in SITU breast cancer two years after I was diagnosed.  Other than that, we have no family history with cancer - women's or otherwise.

My BRAC test came back negative, for what that's worth.

Who caught it?

I found a lump in my breast seven years before diagnosis.  I immediately saw my doctor.  He thought it was a cyst based on how it felt and told me to come back after my next menstrual cycle.  I did and at that point, it was a lot smaller, so he confirmed it was a cyst.  He told me not to worry about it because there is "no connection" between cysts and breast cancer and to stop drinking caffeine.  (Ironically, I was getting most of my caffeine from green tea.)  Over the years, I felt less concerned because my doctors weren't and from what they told me, it fit the profile of a cyst.  

After seven years the lump felt different - it was more solid and it didn't change depending on my menstrual cycle.  I put off going to the doctor for a couple of months because I thought it was still a cyst, but two months later I started to feel pain in my breast.  That's when I went to the doctor and learned I had breast cancer.

Coincidentally, within a week or two of my diagnosis, I heard that researchers found there "may actually be" a link between breast cysts and breast cancer.

What were the signs?

Solid lump and pain.  I think the pain aspect is really important because I was repeatedly told that "breast cancer doesn't hurt," and since diagnosis, I have met countless women who experienced pain before diagnosis.  I think this makes sense - the tumor was pushing tissue, ducts, etc., out of the way - why wouldn't it hurt?

Did your doctors listen to you?

At the time of diagnosis?  Yes and no.  My general practitioner tried to get me an appointment with a breast surgeon the same day she felt the tumor.  (I went in the next day.)  I am African American, but mixed race so people often think I'm Caucasian.  I told the breast surgeon that I'm Afrian American, but she asked me repeatedly if I was certain that I didn't have an Ashkenazi Jewish background.  My husband and I were flustered that she asked me that question so often.  Many young women get breast cancer - not just Ashkenazi Jewish women.

After I began treatment my medical onologiist didn't listen to me about Herceptin and Tamoxifen side effects.  AFter three visits, my husband took the day off from work to tell my doctor the same exact things I repeatedly told him.  He then took it seriously.

What would you say to a young woman who might have something wrong?

Advocate for yourself.  If you notice any changes at all - and if you're diagnosed with a cyst - insist on regular mammograms and perform regular self-exams.  Don't assume that everything's fine just because you're young or your doctors say it's just a cyst and you have nothing to worry about.  Although statistically speaking you have a very small chance of developing breast cancer, it happens.

If you are a young woman with breast cancer, know that you are not alone.  Young Survival Coalition is a fantastic resource for young breast cancer patients and survivors.  Also, be sure to look into ways you can minimize the risk of developing lymphedema and, if you do develop it, go see your doctor immediately.  My doctors told me not to worry about it, but it's the one side effect of breast cancer treatment that impacts my life every minute of every day. 

Shellie

The next story comes from another friend of mine - Shellie.  Please see her blog Clever Cancer Title to learn more about Shellie and her story.

 

Age and diagnosis

 

I was 31 years old when I was diagnosed. November 18, 2012. Invasive Ductal Carcinoma Stage 2B.

 

 

Family history of BRCA mutation?

 

No family history. But I did have Non-Hodgkins Lymphoma when I was 13. They say by the time you find breast cancer it has been growing for about 20 years. If this is true, I see some connection with the fact that I was in my puberty years and receiving multiple CT Scans and MRI's. I never got radiation which I've heard plays a big part in young non-hodgekin fighters in getting breast cancer later on.

 

 

Who caught it?

 

Actually the person who caught it was a plastic surgeon. I went in for a consultation to get breast implants in May of 2012. It was very small, and I hadn't even felt it yet. But he did, but brushed it off that I was too young to worry about it. I actually scheduled surgery for December  of that year (giving myself time to save up money for the surgery) I put $500 for the surgery. They never asked me to get clearance for the lump he found. When I called to cancel the surgery because I was diagnosed with cancer they denied refunding me the $500 down payment. Which at the time was a blow.

 

 

What were the signs?

 

From May 2012 to November when I went it... it had quadrupled in size. It was large and painful. I felt it all the time. I can't believe I just thought it would "go away' with having cancer history ... I was just in so much denial. How could I get cancer again? No, I already did my cancer time.

 

 

Did your doctors listen to you?

 

Yes, from the time I went into my obgyn I had a mammogram set for the next day. It was less then a week from my first visit to my diagnosis. Maybe that's why I put it off for so long. Anytime I went in for anything I always got the 3rd degree and had multiple tests that usually cost me a lot of money.

 

I just thought it would be one of those situations. And after 20 years of going through multiple tests... it had gotten old. I just kept thinking it would have the same outcome. You're fine.

 

 

What would you say to a young woman who thinks something might be wrong?

 

Don't put it off, breast cancer is a deadly disease once it spreads out of your breast. It is then stage 4 and there is no cure. It can spread, and given time it probably will. As soon as you sense anything is wrong, go in. Don't wait. It's really scary, but people are here to help every step of the way. My favorite quote is "Parts are just parts and the only one that truly matters is the heart." Whenever I get sad or scared I say that to myself like my own mantra. And its true.