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.

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.

------------

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.)

Marisa

Next, this is Marisa's story.  Please see her blog to read more about her story:

Age and Diagnosis

I was 27 when I was diagnosed with stage 2b invasive ductal carcinoma.

I have no family history of breast or ovarian cancer. I have done the genetic testing but won't get the results for another month or two.

  

Who caught it?

I did. I have 2 year old daughter who I breast fed till she was almost 16months. When I stopped breast feeding I noticed a mass in my left breast and thought it was just a build up of milk. By the time I took her for her 18month checkup the lump was still there and I could even see it. I asked the doctor to have a look at it and he didn't make a big deal about it but gave me a referral for an ultrasound and told me to check it out. I was still convinced it was just a result of breast feeding. My daughter sat on my lap while the ultrasound was being done and they found three lumps and also some swollen lymph nodes. The next day I had a mammogram and biopsy and the day after that it was confirmed that I had cancer.


What were the signs?
Other than feeling the lump, there weren't any signs. Three years earlier I had found a pea sized lump in my breast and had an ultrasound but was told it was nothing. I now know it was in the exact same place as my cancer but can't be sure they were related.

Did your doctors listen to you?Yes. He didn't make a big deal about it, in fact I almost didn't have the ultrasound because I had to keep rescheduling it, but he told me to have an ultrasound to check it out.


What would you say to a young woman who thinks she might have something wrong? 
Since being diagnosed I have taken my sister for a breast ultrasound (which luckily turned out to be nothing) and have been told by friends that their family members have been to the doctors to check out lumps that they were too scared to bring up before. My advice to anyone who has any health concerns, whatever they may be, is to bring it up with a doctor. There is no harm in seeing a doctor if there is nothing wrong, but there can be a lot of harm in ignoring it.
Everyone from the obstetrician to the ultrasound technicians told me I looked too young to have breast cancer. We then did IVF to harvest my eggs before starting chemo, and I every time I had to tell a new nurse or doctor why we were doing IVF I got the same response.

I even wrote a blog post about it:

I'm really starting to get sick of hearing this. I guess I understand people thinking this, but i still get surprised when someone actually says it, especially health professionals like doctors, nurses, and even sonographers. And what am I supposed to respond with? 'Yes I am too young to have breast cancer', 'Actually I must be older than you think', 'cancer doesn't discriminate'? Surely these people have some sense to know that telling me this is not a compliment, nor is it helpful. It certainly doesn't make me feel any better, and it just reminds me of how shit this whole situation is. At first I didn't mind too much. I guess it was a little comforting knowing that other people were as shocked as I was about my cancer, but I'm over it now. It's just the way things are. Every time I have to explain my situation to a new person, I don't need to be reminded of how ridiculous this all is. I was almost going to say 'how unfair' this is, but I stopped myself. As an adult I have learnt that there are few things 'fair' in life. Bad things happen to good people. Good things happen to bad. Incredibly strong and wonderful people can be taken from us by cancer, among many other things, and 'fairness' just doesn't come into it.

  

Becca

Next up is Becca H.'s story.  Please visit her blog Becca's Battle to get to know this beautiful woman better.  Here is her story in her words:

I am 27 now, 26 when diagnosed.  I was diagnosed stage 2a initially because lymph node biospy and MRI/pet were clear but ended up stage 2b after mastectomy with sentinel node coming back with mircomets. I am triple negative.

I felt a lump myself and it was passed off as a cyst by doctors for 3 months by ultrasound until it grew bigger, and they recommending aspirating it. I didn't think cancer until they went to aspirate it and it was solid not fluid. My mom did have cancer four years ago but tested negative for the gene, as did I.  My PCP who is also a family friend who had breast cancer pushed me to do early mammos for years and I never did making the excuse that my mom didnt have the gene. Boy was I wrong and maybe had I listened we would have caught it sooner.

 

Listen to your gut and your body. I wish i had the first time and may have caught my cancer sooner rather than allowing a doctors advice of it being a cyst and to just let it be for months. If there is something there-benign, cyst or not -it's not supposed to be there, I would always get it checked and removed just to be sure, because you're not too young-as I found out the hard way.

 

Lara (me!)

Age and diagnosis 


I was diagnosed with Stage 1, grade 2 invasive ductal carcinoma at the age of 30.

Family history or BRCA mutation?

My mother was diagnosed with late stage breast cancer when she was 35, and she died of metastatic breast cancer when she was 40 years old.  No other aunts, cousins, grandparents with breast cancer.  I tested negative for the BRCA mutations.  Obviously there was some genetic link between my mom and me, but nobody knows what it was.

Who caught it?

Routine mammogram caught mine.  Since my mom was diagnosed with breast cancer at 35, I began routine screening at the age of 25.  Every year I'd get a bilateral mammogram, plus ultrasounds.  When I was 28 years old, the radiologist told me that I had fibrocystic breast tissue and I had multiple benign tumors in each breast.  "You're a complicated breast case," he said to me.  "At least I'm not a head case, right?" I joked.  He didn't laugh.

The radiologist saw that in my mammogram when I was 28 years, I had these calcifications in the right breast.  The calcifications had doubled since then, which meant cell growth, which meant.... malignant cells.  

What were the signs?

There were no signs for me.  That's the scary part.  Since I had dense breast tissue and been told I had multiple cysts, tumors, etc. in each breasts, I didn't bother doing self breast exams.  My breasts were just lumpy and bumpy.   Since I have generalized anxiety disorder, I didn't want to get myself worked up by obsessing over all the lumps in my breasts.  Looking back, I'm glad I did that or I would have driven myself mad.

Did your doctors listen to you?

My doctors took everything pertaining to my complicated breasts seriously.  A couple of years, I thought they were putting me through too many invasive procedures and ultrasound guided biopsies.  Because of my mom, every doctor I encountered took any potential threat in my breasts very seriously. 

How I felt after every mammogram.

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

I echo all my friends whose stories I have published so far - listen to your body.  If something feels off, like that lump isn't going away or maybe that pain isn't normal, go see a doctor.  If you feel a doctor didn't take your concerns seriously, then find another doctor who listens to you.  

Nikki

The next story I want to share with you is my friend Nikki's.  I love this woman like she's my sister.  I would seriously cut a bitch for this woman, and I know she'd do the same.  Nikki is a photographer hobbyist and she used art therapy to help her through treatment.  Please see her blog Dolls In Dystopia to see the amazing art she has created.

Age and diagnosis

I was 36 years old and diagnosed with stage 2, Her 2+ IDC.  It was very aggressive, rating an 8 on the Nottingham scale (the scale of aggression that measures from 0 to 9).  Both of my tumors were grade 3 at the time of my radical mastectomy in October 2010. 

Family history or BRCA mutation? 

I did not test positive for any of the known gene mutations, but there is a family history (that I didn't even know about until after my diagnosis.)  My grandmother and all but one of her sisters have each had a granddaughter diagnosed with breast cancer at about my age.  The good news is that each of my cousins are 20+ year survivors - so while we may have some sort of genetic predisposition to breast cancer, we seem to also be predisposed to kicking its ass. *Knock on wood.*

Who caught it?

I found it.  I had just gone to the funeral of a young woman who passed away from breast cancer at age 32.  The funeral was out of state and a dear friend asked me to make the drive with her because she was still nursing her baby boy and needed to take plenty of nursing breaks on the drive down.  The funeral had a huge impact on me and I am now close to the mother of this young woman I never knew.  She was clearly loved by so many people and left behind 2 beautiful children.  I credit her every day with helping me find the tumors in my own body.  I wasn't doing regular SBE's and the day I found the breast cancer, I was doing it because of Kim - a young woman I never met, but who I feel saved my life. 

What were the signs?

In retrospect, probably more than I realized.  So many other young women I know talk about having gotten really sick shortly before diagnosis.  And it is no different for me.  I became gravely ill in late July of 2010 and had a lingering cough that I couldn't shake even after my diagnosis. Most of this was attributed to living in an apartment with black mold (which I promptly moved out of) but I find it interesting that so many other young women note the onset of a strange illness shortly before diagnosis.  Other than that, the main signs were the two lumps I could feel - the primary tumor that was underneath the nipple of my left breast, and the lymph node which was on the side of my left chest near my underarm. 

Did your doctors listen to you? 

Absolutely.  I had a history with breast biopsies of my right breast due to dense, fibro-cystic tissue.  My nurse practitioner could feel the tumor but barely - and she could not feel the lymph node at all.  She did arrange for me to have a mammogram and an ultrasound though to be sure even though she thought it was probably a cyst.  Nothing showed up on the mammogram, but both tumors were clearly visible on the ultrasound.  I walked out of the doctor's office that day knowing I had breast cancer even though no one could formally diagnosis me until after the biopsy results came back two days later. 

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

NEVER ignore your body.  If something seems wrong or you feel something that you don't remember being there before, have it checked.  And be insistent.  You have to be your own advocate when it comes to your health.  As a young person, doctor's often miss our cancers because they assume it is something else.  I was told by one doctor "Cancer is a disease of the elderly."  Well, I wish someone had told my breast cancer that.  The truth is body awareness is key for many reasons - not just cancer.  So many illnesses can be treated effectively - but that often hinges on early diagnosis.  I recently had major kidney surgery to correct a birth defect in one of my kidneys.  This was an issue I knew existed and I also knew may have to be addressed at some point.  But I suddenly began having discomfort while urinating a few months ago that sent me to the doctor.  It was totally unrelated, but it led my kidney doctor to the realization that my left kidney was almost fully obstructed and I needed the surgery urgently in order to not damage my kidneys beyond repair.  I had the surgery three weeks ago and am now on the road to full recovery.  We never figured out why I had the painful urination.  But I know it was my body talking to me.  If you listen, I think you'll be surprised at what your body is willing to say to you.

Lorna

This is Lorna R.'s, who was diagnosed with Her2+ breast cancer at the age of 21 but who had no family history of breast or ovarian cancer, story:

I was diagnosed with breast cancer at the age of 21. I honestly never ever thought it would happen to me. Breast cancer is a cancer I consider women in their late 50s+ get.

I remember during the process of diagnosis that my consultant and doctor kept on repeating only 2 people your age a year are diagnosed with this.  I had no signs at all other then a lump which I thought was a cyst due to my age, I until after months it didn't disappear. I didn't feel ill.  I felt normal. I remember staring at the scan looking at this beast of a mass and my consultant saying if this was a 50 year old+ breast I would be saying this is breast cancer. But he wouldn't commit to it. But that's when I knew.

After being diagnosed with the breast cancer, I had all the scans which was a scary experience as it was.  I was told that it was secondary breast cancer. The cancer had spread from my breast to my lymph nodes and a vertebra. Due to the cancer being secondary my oncologist wanted to start my treatment as soon as possible and look to have surgery at a later date.  I was given two weeks from diagnosis to inquire about egg harvesting, etc., as chemo effects your reproductive system. I was told I had no time for this. So I'm there 21 with cancer and being told after treatment I may never have my own children.  But I couldn't just sit and feel woe is me - I had to stay positive. I took every day as I could, and I was lucky to have the support from my family, boyfriend and friends to help me stay positive.

The hardest thing I found was the change in appearance I felt unsexy and attractive.  I also felt that I was looked at and treated differently when all I wanted to act as a normal 21/22 year old. I ended up doing exactly what I wanted to do.  I didn't let cancer weigh me down.  I didn't let chemo mess up anything I had planned. I lived life as full as I could and be as positive as I could. 

Luckily for me chemo shrank the tumour to a pea size so they considered surgery. So I had a breast margin and lymph node clearance. I then had radio therapy.  I was told at the beginning the cancer in the vertebra would never go away and that they can maintain it like diabetes. Yet after chemo, it wasn't showing onmri or bone scan. Now they are saying it may never have been there in the first place, that it was so slight, but they can't test it now as it's not there. So I have to accept that it's a maybe and love like it is there. I have been told I will be on maintenance drugs for the rest of my life due to it being in the vertebra. But hey, I'm alive  

Yes, it's hard having cancer so young. Yes, it changes everything. But cancer isn't easy at any age.  Cancer doesn't care about age. Yes cancer changed everything in my life, but I wouldn't change anything about it.  I've met some of the strongest people I'll ever know in my life. I have the strongest relationship with my family and boyfriend. I have a whole new life perspective. The only message I want to say is, just because you're young doesn't mean you're exempt from cancer. Cancer cares not for age, gender or race so never ignore anything, it's always worth checking. 

Anne

Next up, is Anne's story.  Please visit Anne's blog, which can be found here.

 

 

Age and Diagnosis

 

28 years old, and stage 1 breast cancer .

 

Family history or BRCA mutation?

 

No family history at all, but I am BRCA2+.  [Please see here for more information regarding the BRCA mutations.]

 

 

Who caught it?

 

I found it myself, in the shower. Brought it up to my OBGYN who said it was most likely a cyst. After a radiologist confirmed it was a mass, my breast specialist also told me it was probably nothing. His exact words to me were "I don't think this is cancer. If I did, I would tell you".  But he finally agreed to biopsy it. When he called with the biopsy results that it was indeed cancer, I could tell he felt very guilty for telling me it was "nothing".

 

 

What were the signs?

 

A small, hard pea sized lump

 

 

Did your doctors listen to you?

 

No. In fact had I not been pregnant at the time (I subsequently lost the pregnancy), I don't think my doctors would have felt pressured to pursue it.

 

 

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

 

Be your own best advocate. Pressure your doctors to give you an answer. Young women CAN and DO get breast cancer. Even the youngest, healthiest, least suspecting ones who "did everything right" to live within the lowest risk factors.

Sophia

Hello Friends!  The next amazing young woman I'd like for you all to read about is Sophia.  I can't say enough great things about this woman.  Seriously.  She's one of my inspirations that got my behind into running. 

Diagnosis and Family History?

•Diagnosed at age 28 – Triple Negative Breast Cancer – Stage 2A

•Mother diagnosed with Ovarian Cancer – Stage 3B (OBGYN was made aware of this once I found out)

Who caught it?

In February of 2012 I felt a small pea-sized lump on the lower inside area of my left breast. The lump sat right on-top of the wire of my bra. I continued to monitor it and a few weeks later went to the doctor to get it checked. During my appointment, my OBGYN assured me it was "normal" but advised that I stop drinking soda and coffee because "caffeine often leads to overactive milk ducts". I quickly responded with, "I don't drink coffee or soda." She giggled and said, "Well then I'm sure it's just something that will go away with time."

I left the office and felt this uneasy feeling in my gut. I continued to monitor the lump and a few months later it became painful. Often times I would be sitting at my desk at work and feel a sharp pulsating sensation. Every time I would go for a run, I could feel the lump rub against my sports bra and it became increasingly painful. I decided to hop on the computer and started to research my symptoms. To my surprise, I came across many blogs and forums where women described their breast cancer discovery very similar to mine, but they were all older women so I felt at ease. "It can't happen to me, I'm 28, these ladies are all over 40!"

Finally, I decided to return to my physician and demand an answer. A few weeks later I met with the nurse practitioner who conducted the usual breast exam. Once again, she assured me it was nothing serious and that it felt very much like a cyst. I questioned her – and I'm glad I did. I asked if it could possibly be cancer. She chuckled. "No, I highly doubt it. You're so young and full of energy" She was right. I was young. I am young. I was full of energy, thankfully enough energy to push and demand a mammogram despite my age. After hours of controversy with the imaging center, I was able to make an appointment for an ultrasound ater being told over five times that a mammogram will NOT be conducted due to my age. When I arrived at the facility, I was pleasantly greeted by the check-in nurse and reminded that I "will not be having a mammogram today due to (your) age." I smiled and said, "sure thing. I won't leave until I get one." That visit seemed to have last several hours. The technician took me back to the room and conducted the ultrasound on my breast. Talk about painful. She was surprised to discover how uncomfortable the procedure was for me. Any pressure she applied felt like a knife cutting my breast. After the ultrasound was finished, I was instructed to wait back in the waiting area for the next available OBG. Ten minutes later, I received a mammogram and the rest is history. My OBGYN didn't save my life, my persistency saved my life. The fact that I was "young and full of energy" saved my life. My gut feeling to question the doctors presumptuous diagnosis, saved my life. 

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

My advice – it's ok to question doctors. They, just like us, are human. They don't feel what we feel. They don't walk our daily lives. If I would've allowed her credentials to overcast my gut feeling, who knows where I'd be. 

Please visit the Triple Negative Breast Cancer Foundation for more information.