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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.

Lexie

The next story comes from Lexie, who you can learn more about at Lexie's Breast Cancer.


Age and diagnosis

39

Left Breast - Infiltrating Poorly Differentiated Duct Cell Carcinoma
                    Stage IIIc, ER+/PR-, HER2-
                    Histologic Grade 3/3, Nuclear Grade 3/3, Mitotic Grade 2/3


Family history or BRCA mutation?

Yes I have BRCA 2.

[Lexie's blog states that her mother and grandmother passed away from ovarian cancer.]


Who caught it?

My husband.

[Here is more from Lexie's blog]

This was June 2012 the doctor also gave me my prescription for the mammogram to have it done by August. Since we were moving and breast cancer was the last thing on my mind I pushed it off. One day in September [her husband] touched me and felt the lump. For some reason I knew right away it was cancer. So when I went for the mammogram I told the tech. When I went back for the ultrasound you could tell by the look on their face even if they did try to hide it. 

I am glad I did not wait for my doctor to call me and I took matters into my own hands. I got the whole process started much earlier then if I would have waited and the outcome might have been different. But right now I am happy but scared I am worried that when all said and done this will come back and I won't be around to watch [her son] get older and married.

What were the signs?

Just a lump.


Did your doctors listen to you?

No not in the beginning.  I was very proactive and switched surgeons and oncologists,


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

Listen to your gut.  You know what is going on with your body.

Kate

I was introduced to Kate through a mutual friend who wanted me to meet a friend of hers who had children after her breast cancer diagnosis.  I was feeling pretty awful about my fertility, or lack thereof, and hearing Kate's story helped me in so many ways.   Kate is one of the nicest women I have "met" (since we're online buddies), and it's amazing to know that out of something so terrible, like breast cancer, friendships like these can arise. 

Here is Kate's story:

Age and Diagnosis

I was 27 when I was diagnosed, 32 now. I was diagnosed with Stage 2A, slightly Her2N+ (basically triple negative) ductal carcinoma with medullary features. There was no lymph node involvement. My tumor was a nasty one, Grade 3, 2.7 centimeters with a high proliferation index.

Family history or BRAC?

There has been plenty of cancer in my family, but no breast cancer. Both my dad's parents died of cancer in the years leading up to my diagnosis (Grandfather had prostate and bladder cancer, Grandmother had a rare type of sarcoma that metastasized to her lungs), and my dad had received treatment for a melanoma. Since my diagnosis, my dad's younger brother was diagnosed with prostate cancer at a young age.

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

Who caught it?

I found my tumor. It was bizarre. One day everything is normal, and the next I had this mass the size of a ping-pong ball sticking out of my chest. It was visible and high enough on my chest to see it in a modest v-neck. My husband and I were house sitting, and one night I noticed it as I was getting ready for bed. Wes thought I should take it seriously, so I showed up at my GP's office the next morning first thing without an appointment.

What were the signs?

The scary thing was there weren't many signs leading up to my diagnosis. I felt great, didn't have any issues with my breasts. In retrospect, I realize I was coming out of a seriously stressful time in my life and that I might have missed signs. I am lucky my tumor was so obvious, because I would have missed a more subtle one.

Did your doctors listen to you?

I have the most amazing general practitioner ever. She has treated me since I was a teenager, as well as treating many of my female relatives. She was even invited to my wedding! She did listen to me, as she has done every time I've gone to see her. She wanted me to have an ultrasound done just in case, though she thought it was probably nothing. I had an ultrasound that afternoon, and Dr. T called me that evening. The results were unclear, so they thought I should have a biopsy done. She recommended a breast surgeon ("He's who I would see if I needed a breast mass biopsied.") and got me in to see him the next day. I was not the first young woman that my breast surgeon had seen with breast cancer. He was reassuring during the biopsy, but did not treat me as if I was wasting his time or that my lump did not need to be addressed. As it turns out, it was cancer. I realize how unusual my situation was, and also how lucky I was to get diagnosed so quickly.

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

I would say be proactive and don't procrastinate in getting it checked out. If it is cancer, it will not get better by ignoring it or fitting it in after the other things you have going on.

Open letter to SimplePickup2:

Dear Douchebros,

I just watched your video where you put these "haters" on blast, saying because of them, breast cancer research just lost out on $7,000.  I can't speak for all the other haters, but on behalf of this hater, GOOD.

When I heard that the foundation refunded your money and asked you to STOP using their name in any videos, I felt happy.  I might have even giggled in glee.  You say in your video that this foundation was pressured by a small minority of haters who were offended.  To that, I say it wasn't a small group of people who were offended by what you did, you self-entitled douchebags.  Fuck you, and anyone who looks like your smug douche faces. 

I've been through a lot because of breast cancer: three surgeries, seven weeks of radiation, four and a half months of chemotherapy, and countless hours of therapy.  On top of that, my mom died of metastatic breast cancer.  When I heard that dudes were motorboating to raise money for breast cancer research, I wanted to nutpunch every single one of you.  For testicular cancer awareness, of course.

What you did was offensive and crossed the line so far, I don't think you can see that line anymore.  It's another state to you.   Why is it offensive, a douchebag might ask?

Using the guise of breast cancer awareness to give you pass to motorboat a pair of breasts you otherwise had no chance of touching, it's trivializing and sexualizing a disease that's deadly and disfiguring.  My mom = dead.  Me = no breasts.  You think someone like me is going to hear about your pranks and go, "Oh, it's cool that they're motorboating chicks because breast cancer awareness."  Hell no.  I mean, unless you want to motorboat my reconstructed chest, the same chest that doesn't have any nipples?  Oh shucks, the implants that my doctors spent months stretching out my skin to put into my body DO NOT MOVE.  You can try to motorboat Barbie and Skipper, but you're going to be hitting your face on hard, stationary fake tits.  But you don't want to motorboat my chest or any other chests that look like mine.  You want nice, perky, disease-free breasts to put your cheap cologne-splattered face in between because that's how playas roll, right?  

The reality of breast cancer, which is beautifully illustrated in a video (below) made by a group of survivors, would be too horrifying to get your attention.

Don't use the disease that took my mother's life and could very well take mine as an excuse to touch boobs, bros.  It's gross and unbecoming.  You say you wanted to help a worthy cause, but those who would benefit from your so-called help, like all of us affected by breast cancer, shouldn't have to give up our dignity just for the sake of awareness.  Proclaiming "awareness" and then behaving inappropriately, doesn't mean you're excused from any criticism.  This disease is deadly and it isn't a joke, and your actions made this horrifying disease a joke.

If being offended by the pranks you pulled makes me a hater, then I'm the biggest hater you'll encounter.  If you really want to help women, why don't you take the money you raised and donate it to a women's shelter or RAINN?   

Lastly, kiss my mastectomy scars.

Sincerely,

Lara

Me before getting my skin stretched out.

Webwriter

The next story comes from a friend of Michele's - Wendy, aka Webwriter:

 

Age and diagnosis

I was 40 years old when I was diagnosed with Stage 2, Grade 3, IDC

 

Family history or BRCA mutation?

I had zero family history and tested negative for BRCA.

 

Who caught it?

My very first “baseline” mammogram caught it. I was FINALLY going to schedule the hysterectomy I had been begging for when my new GYN realized I’d had a birthday. So, and I’ll never forget the words, he said, “You’re 40! Congratulations! It’s your lucky year. We’ll schedule the surgery right after we get this baseline mammogram out of the way.”

 

What were the signs?

I knew I had a lump. I’d known it for a long time. But in my twenties, on the other side, I had pretty much the same lump in the same location, sitting high up, right over the top of a knot of muscle. My GYN back then laughed at me. He was sure it was related to child birth and then described a needle aspiration in such grisly detail, that I, as he intended, took his word for it and let it go. Twenty years later I was again, the mother of a young child. My OBGYN hadn’t said anything about this lump, despite all of my very regular checkups. It was painful sometimes. Sometimes shooting, stabbing sharp pains.  Sometimes it ached like a sore muscle. So, it fit, just like last time. Knowing I was “still too young,” I let it go again. I shouldn’t have.

I also suffered uncharacteristic depression, fatigue, joint pain, and a general moodiness from the birth of my daughter until chemo-pause. I was unable to produce enough milk to properly breast feed her, despite a massive intake of Fenugreek, a script from my OB for Reglan, and a hospital grade breast pump used like clockwork. I was diagnosed with PPD, and placed on many different kinds of meds to fight it.  Nothing worked. I kept telling my husband, “I just feel hormonal. Something has got to be off.”

 

Did your doctors listen to you?

No. Despite hormone testing which showed pretty normal for my age, if high in testosterone, I was convinced I was in peri-menopause. I was sent to counseling and placed on every anti-depressant in the book. Finally, I demanded birth control. (Not recommended for smokers over 35) It helped, A LOT. No one who knew me doubted something was hormonally wrong after that- except my doctor. I changed GYN’s twice. The third agreed to the hysterectomy, in lieu of continued hormones, and sent me for the baseline. (After a breast exam by each of them that did not find the lump either.)

 

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

 

Listen, listen, listen to your body. It knows when something is not right. Do not doubt yourself. You CAN trust you. Do NOT be intimidated by the white lab coat either. These guys are working from experience and averages. They don’t know YOU, not the way you do. If you feel in your heart that something is wrong, don’t stop until the answer you get feels right.

After examining my Grade 3, highly hormone positive tumor, which had, by then, invaded my lymph nodes, my surgeon approximated its growth and age at three years- without knowing the history I just gave you. My daughter turned three during chemo.  Had I listened to my body, had I insisted with my doctor, there is every reason to believe we’d have caught this at Stage I. You are wiser than you know. Listen to you. It is much easier to say, “Silly me, how embarrassing.” than it is to say, “Oh My God, I could’ve stopped this in its tracks.”

Frances

After I asked a group of young adults with cancer for their story, Frances was one of the first people to reach out to me.  This is her story.

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I was 32 when I got diagnosed. I had noticed a lump about a year before dx but with hectic life and not imagining it, the observation was dismissed. A year earlier also I was with a lover who noticed a milky discharge coming from my nipple, but that only happened a couple times, and again, dismissed. I was feeling exhausted the months leading up to my diagnosis and the final straw came after having to leave a party one night because of shooting lower back pain and dizziness.  I went to a gynecologist who told me I was fine, and never did a breast exam. About a week later, after not feeling fine, I remembered the lump and told a friend who urged me to get a referral for a mammo, which I did, and they found it right away. I was in later intermediate stage. I had also had two unexplained pancreatitis the year before my diagnosis. Also I had a deficiency in vitamin D.  That's all I knew was wrong before my diagnosis. 

Hope this helps.  I too got sick of the "but you're so young line."  I had it for a while before that and I was younger, visiting doctors and no one caught it, so, go figure. 

Michele

I met my next friend, Michele, through a mutual friend.  We instantly bonded over our mutual disdain toward Komen and what the pink ribbon has become.  Neither of us are friends with the woman who was our mutual friend.  I never knew a friendship could form over a hatred toward Komen, but it can.  It's not the only thing we have in common (running does change everything).

 

 

Age and diagnosis

36. Stage 1 invasive ductal carcinoma. - triple negative breast cancer.

 

Family history or BRCA mutation?

2 aunts (1 ovarian, 1 premenopausal BC).  No mutation.  [Interesting; like me, a strong family history but no mutation.]

 

Who caught it?

 

Me.  [I then asked her for more details regarding how she caught it.]

 

The story of finding it is actually odd--

 

I found it Christmas day 2008.  I had been feeling horrible and exhausted for a couple months and thought it was because of the holidays and having 3 kids.  In retrospect, I think it was the cancer but there's no way to prove it.  My in-laws and my parents were in town and I had just pulled off DAYS of Christmas stuff-- mass, going to see lights, cookie decorating, Christmas Eve dinner for friends & family, santa, Christmas morning presents, brunch for family, a big dinner Christmas day... not to mention all the cleaning in between.  To say I was stressed out was an understatement.  That night, I took a bubble bath.  I almost never take bubble baths (who has the time??).  As I slumped into the water, I rested my hands across my chest... and felt the lump.  I instantly knew it was cancer, I just knew.  It was small and firm. It didn't hurt at all.  I was still breast-feeding my toddler so I knew what my breast(s) should feel like and this was different.

 

The next morning, I called a colleague and asked him to see me *that day*.  He did and ordered a mammogram and ultrasound.  After seeing the images, my fears were confirmed although no one would actually say "you have cancer" until after the biopsy.

 

Did your doctors listen to you?

 

Yes but I teach at the medical school so they had to.  :)

 

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

I would tell any young woman to listen to their own body and intuition.  It doesn't matter how educated you are or who you know.  YOU are in charge of your own body.  YOU know YOU best.  If you think something is wrong, there likely is.  I would also tell any woman (young or old) that your treatment is up to you.  In my case, during the diagnosis and treatment phases of my illness, my MD's and I saw eye-to-eye.  I had a bad-ass cancer and they agreed with me to use a "big gun" approach.  However, when all was said and done and I wanted a prophylactic mastectomy of the other breast and a prophylactic oophorectomy, I had to fight like hell to get those procedures.  My surgeon didn't want to "maim" me (yes he said that)... as if a uni-boob is good for much and my ovaries were chemo-fried anyway. My oncologist was concerned that I was acting out of fear and not fact (hell yes it was fear!!).  In the end, I got that *normal* breast removed (and the ovaries too!) and haven't regretted it. SO, like I said before- YOU know what is best for YOU.  (And, it is perfectly OK to act out of fear and not fact sometimes... ESPECIALLY if that "fear" is robbing you of your sanity.)

Is it November yet?

At the end of September, I decided, "Hey, I should take pictures of all the pink items that come across my path."  You know, after awhile, I had to stop because it never ends, it seems.  Damn you, Pinktober.  You got me.  You are too much beast for me to slay.

The ad doesn't even say if proceeds go to anywhere.... at all.  It's just an almost $60-moisturizer that slapped a pink ribbon on it.

Yoplait and Breast Cancer Action tussled before - read about it here.

THIS DOESN'T EVEN GO TO A BREAST CANCER AWARENESS CHARITY!!!!!  I don't even know what Entertainment Industry Foundation does.  A foundation that gives to other foundations?

This is what I encountered just trying to fly from Pittsburgh to Kansas City, complete with pink balloons as I checked in for my flight.

I just walked into a Hyvee store and holy crap, pink tchtokes everywhere.  You can be head to toe pink if you want!

"Show me your tits... oh wait, sorry, ma'am."

Here, you can have awareness tissues to dab away the tears that all this pink crap causes you.  Yes, I'm crying too.

Uh, men can get breast cancer, too.  Brothers, fathers, grandfathers....

Is it really support if your shoes cover up these socks?

Push pins?  Really?

Even my inbox isn't safe from Pinktober.

Lastly, I'm going to sanitize my hands from all this pink crap with pink anti-bacterial soap.