Stories

Michelle’s Story

Province: British Columbia

Date of diagnosis: August 2014

Age at time of diagnosis: 44

Stage at diagnosis: Stage 2B

Time span from normal mammogram: 4 months

How was cancer found: Lump felt by Michelle

Story details:  In July 2014, I found two little lumps on my breast while showering.  Weird because I hadn’t noticed them before; it was like they had ‘floated’ up to the skin’s surface overnight.  My GP thought it may be hormonal and said she would book an ultrasound, but to give it a month and if they went away, to just call and cancel the ultrasound.  They didn’t go away.

Fast forward to August 26, 2014…ya, not a good day.  When my doctor told me I had breast cancer, the stress of hearing that was unbearable.  It is amazing what went through my head at that moment. Am I going to die, how am I going to tell my husband, my family… Oh god, how am I going to tell my children, they are so small. Will they have to live without me?  My doctor, god bless her, took me by the hand and kept on saying, ‘You are going to be OK, you are going to be OK.’ I don’t know how many times she said that, but when I did hear her, something clicked in my brain and I was like, UH-HUH!  I turned to her and said, “Mary, I don’t have time for this…what is the plan?” She looked at me, smiled, and said, “I know you don’t.” And so it began.

Kicker is that I had a Mammogram that past April and it came back ‘NORMAL.’  I was told by my Medical Oncologist, that my breast cancer was in my breast for at least 3 years… 3 YEARS!  But how can that be?  I have had a mammogram each year for the past 3 years.  I don’t understand.  Her response was that my age had worked against me.  My age? But I am still quite young.  She went on to explain that the radiologists took a look at my mammogram, saw white tissue, looked at my age, and dismissed it as “dense breasts.” (dense breast tissue and cancer both show as white on a mammogram).  They dismissed it… just like that… 3 times!!!  They were WRONG!… very wrong!   Because of this, I missed out on having an earlier diagnosis and possibly only a lumpectomy.  Instead, because someone made that call, I have been through chemotherapy which just about killed me; I was admitted to the hospital 17 days in total during the first 6 weeks of Chemo. I have endured 28 rounds of Radiation that ‘cooked’ me so bad that to this day my incision area is still sore, 6 surgeries, 2 to clear the margins of the tumors, a double mastectomy and  3 reconstructive surgeries and still came out with only 1 boob.

Needless to say, they chose the wrong woman to do this to because I am MAD.  I told my father, that summer, that I had to at least try and do something to spread the awareness of dense breasts. I know if I don’t, that this will always weigh on me.  I have to try!   Every woman deserves to be given ALL the information about their health, and as it stands here in Canada, radiologists do not need to tell us we have dense breasts.  Interesting, isn’t it?  They do not even need to give our family doctors this information.  I don’t want anyone going through what I did because my doctors decided to take it upon themselves to make the call on my health… that is my job!

Feather’s Story

Province: British Columbia

Date of diagnosis: 1995/2007

Age at time of diagnosis: 23/35

Time span from normal mammogram: 10 months

How was cancer found: Diagnostic mammogram

Story Details: I’ve been diagnosed with breast cancer twice. The last time was ten years ago. The first time was at the age of 23. I underwent a left radical mastectomy for a highly aggressive grade three breast cancer. I remained cancer free until 12 years later. At that point, I had two beautiful daughters. I had been having regular mammography. In my mammogram reports, radiologists used the words: “high dense breast tissue”, and “not able to see any abnormalities.” When my daughters were turning two and four years old, I wasn’t feeling well. Although I was told my mammogram showed no abnormalities, I was convinced that something wasn’t right and I scheduled a prophylactic mastectomy. The surgeon asked for a mammogram just before surgery and that mammogram showed cancer in my lymph nodes. Obviously, undetected cancer had been growing for some time. Thankfully, the surgery and the subsequent six months of aggressive chemotherapy, two months of maximum radiation therapy, and a year of Herceptin treatment did what they needed to do. My children were robbed of a lot of precious mommy time, but I’m here today, a 45-year-old healthy woman, and in every way I feel stronger.
I was shocked when I found out that the likely reason for the delay in my diagnosis was my “extremely dense” breast tissue. I was not informed about the risks of extremely dense breasts and that I was four to six times more likely to get breast cancer. I had no idea. I was a trained breast health instructor and even I didn’t know the increased risk of breast cancer related to breast density. All women should know this.

Ellen’s Story

                                                                                                        

Province: British Columbia

Date of diagnosis: Dec 10, 2015

Time span from normal mammogram to diagnosis: 7 days

Stage at diagnosis: 2B

How was cancer found: Lump felt by Ellen

Age at diagnosis: 48

Story details:

I discovered a lump on Dec 01, 2015, while doing a breast self-exam. I was able to see my General Practitioner (GP) the same day, who confirmed the presence of the lump and referred me for a diagnostic workup. Two days later (Dec 03, 2015) I underwent a mammogram, which did NOT show anything suspicious. However, in British Columbia if a palpable lump is found, you automatically proceed to an ultrasound (and biopsy if required), even if the mammogram is “okay”.

Though nothing showed on the mammogram, the lump was clearly visible on the ultrasound and a biopsy was performed. On Dec 10, 2015 I met with my GP and was told the biopsy confirmed high grade Invasive Ductal Carcinoma (IDC). If it was not for the protocol to do an ultrasound when a lump can be felt, my cancer would not have been detected. I’d had a screening mammogram 2 years previously, which did not show anything “abnormal.” I was told (informally) at that time that I had very dense breasts. 

In January 2016 I underwent a partial mastectomy (using breast conserving surgery) and sentinel node biopsy (SNB). Axilla nodes removed through the SNB were clear, though there was one positive intra-mammary node found in the breast tissue during pathology. In addition to the 1.6cm IDC and the positive node, pathology also showed a 2.6cm Ductal Carcinoma in Situ (DCIS), the size of which meant it had been growing for some time (but not caught on previous mammograms).

Tumor biomarkers came back HER2+, ER+/PR- and histological grade 3, all factors that indicate the cancer is more aggressive and likely to recur. In addition to chemotherapy I received Herceptin (trastuzumab), a monoclonal antibody that targets the over-proliferation of the HER2 protein. And, being ER+ I will also need to be on hormonal (anti-estrogen) therapy for 5-10 years.

I’m almost done active treatment (initial surgery, 8 rounds of chemo, 33 sessions of radiation, and one year of Herceptin) and will require annual mammograms to check for local recurrence. I had the first one in February 2017, which came back “normal”. I asked my oncologist what density the radiologist reported, and was told that I had “heterogeneously dense” breast tissue, which is classified as Category C. This level of density means that small masses may not be visible using standard mammography.

As my original cancer was missed on a mammogram, I have absolutely NO faith that future mammograms would find any recurrence in time. Because my breast density, HER2+ status, and histological grade puts me at higher risk, my oncologist has requested MRIs in addition to mammograms for the next 10 years (after which, the chance of recurrence with HER2+ cancer is much lower). 

I am very concerned by the false sense of security that comes with getting an “all clear” mammogram. If you have dense breasts, there is a real possibility that things can be missed! I am also concerned that I was not warned that the level of density increased my risk of breast cancer, and that it was even higher than having a direct family member with the disease. Women need to know this!! And access to this information shouldn’t be dictated by what province you live in! Very thankful for organizations like Dense Breasts Canada for increasing awareness.

Nancy Cappello

Nancy M. Cappello, Ph.D. is founder of Are You Dense, and Are You Dense Advocacy Inc. which was borne out of her own tragedy of an advanced stage breast cancer diagnosis in 2004. Her cancer, because of dense breast tissue, was not found by mammogram even though she had yearly “normal” mammograms since she was 40. She is the inspiration behind the national grassroots movement of advocates legislating for breast density notification and insurance laws to prevent later stage cancers. She introduced our co-founders and has been a source of inspiration for Dense Breasts Canada.

Nancy’s

Story                                

I did what the medical field and the countless number of cancer advocacy groups told me. I ate healthy, did monthly self exams, exercised daily, had yearly mammograms AND had no first-degree relative with breast cancer. Little did I know at the time that there was information about my health which impacts my life outcomes that was being kept from me – the patient – and others like me.

 I call it the best-kept secret – but it WAS known in the medical community. I have dense breast tissue – and women like me (2/3 of pre-menopausal and 1/4 of post menopausal) have less than a 48% chance of having breast cancer detected by a mammogram. In November 2003 I had my yearly mammogram and my “Happy Gram” report that I received stated that my mammogram was “NORMAL” and that there were “no significant findings.” Six weeks later at my annual exam in January, my doctor felt a ridge in my right breast and sent me for another mammogram and an ultrasound. The mammogram revealed “nothing” yet the ultrasound detected a large 2.5 cm suspicious lesion, which was later confirmed to be stage 3c breast cancer, as the cancer had metastasized to 13 lymph nodes.

So on February 3, 2004 my life changed when I heard those dreaded words, “You have cancer.” I asked what most women would ask – thinking that I was an educated patient following the medical community guidelines – “Why didn’t the mammogram find my cancer?” It was the first time that I was informed that I have dense breast tissue and its impact on missed, delayed and advanced stage cancer.  What is dense tissue, I asked?  Dense tissue appears white on a mammogram and cancer appears white – thus there is no contrast to detect the cancer (It is like looking for a polar bear in a snowstorm). I asked my physicians (now I had a TEAM of them) why wasn’t I informed that I have dense breast tissue and that mammograms are limited in detecting cancer in women with dense breast tissue? The response was “it is not the standard protocol.”

So I went on a quest – for research – and I discovered for nearly a decade BEFORE my diagnosis, six major studies with over 42,000 women concluded that by supplementing a mammogram with an ultrasound increases detection from 48% to 97% for women with dense tissue. I also learned that women with extremely dense tissue are 5x more likely to have breast cancer when compared with women with fatty breasts and that research on dense breast tissue as an independent risk factor for breast cancer has been studied since the mid 70’s.  Women with dense breast tissue have double jeopardy – a greater risk of having cancer AND are less likely to have cancer detected by mammography alone.

I endured a mastectomy, reconstruction, 8 chemotherapy treatments and 24 radiation treatments. The pathology report confirmed – stage 3c cancer – because the cancer had traveled outside of the breast – to my lymph nodes. Eighteen lymph nodes were removed and thirteen contained cancer – AND REMEMBER – a “normal” mammogram just weeks before. Is that early detection?

Since then, I learned that there are many women like me with recent normal mammogram reports with a hidden intruder stealing their life.  I am on a quest to expose this best-kept secret of dense breast tissue to ensure that women with dense breast tissue receive screening and diagnostic measures to find cancer at its earliest stage – isn’t that the purpose of Screening Programs?

Outraged by the resistance from the medical and health care community to disclose a patient’s breast tissue composition to her as part of her mammography results letter, my husband and I went to the Connecticut legislature and after much drama, Connecticut became the first state in the United States to disclose dense breast tissue to the patient through her mammography report. I subsequently founded two non profit breast health organizations, Are You Dense Inc. and Are You Dense Advocacy Inc. to educate the public about the risks and screening challenges of dense breast tissue.

Joanne’s Story

Province: Ontario

Date of Diagnosis Dec 5, 2012

Time Span from normal mammogram to diagnosis: 14 months

Stage at diagnosis: 4

Age at Diagnosis: 61 just retired, house paid, starting to travel…not!

How was cancer found: I felt pains in my breast like mosquito bites. The doctor put me on antibiotics in July 2012, thinking it was a blocked duct….I was dying then.

Story Details: For years, I was told I had cystic breasts, just normal lumpy breasts. I cut back on coffee, tea and chocolate. I was also told there is no such thing as a painful tumour. Cancer tumours don’t hurt right? Wrong.

A few years prior to my Stage 4 de novo diagnosis, my GP, the mammography technician and I could feel a thickening, but it didn’t show up on the mammogram. The technician even went so far as to place a paper clip under my breast so the radiologist would look closer in that area. Nothing showed on the mammogram; nothing was ever mentioned to me about my having dense breasts and the benefits of having an ultrasound. So lo and behold when the cancer finally showed as a speck at 6 o’clock and 4 o’clock on my 2012 mammogram, it was too late. It had already traveled vascularly to my liver. My breast surgeon never read the CT scan prior to my left mastectomy surgery as my liver was covered in lesions…there should not be any mastectomy or reconstructive surgery when you are Stage 4. It is too dangerous….Had she done her job I would have been spared so much pain and grief…to this day!

I didn’t know to ask if I had dense breasts. If I had I might not be what I am…dying from Stage 4 breast cancer. I’m so angry that curse words just spew uncontrollably from my mouth. I never knew the questions to ask: it’s not about being breast cancer aware, it’s about knowing what to ask. It is the doctor’s responsibility to tell you if you have dense breasts, but our doctors are not telling patients. There’s a big gap. There are 15,000 women with Stage 4 stories in Canada and breast density needs to be part of the knowledge base.

Lorraine’s Story

Province: British Columbia   

Date: Oct. 2012

Age: 58

Stage at diagnosis:  Stage 0 DCIS, then told Stage 2 and a year later Stage 4

How was cancer found:  Felt a lump, tumour seen on ultrasound, not mammogram

Story Details: My name is LORRAINE and I am from beautiful British Columbia, Canada.  I became a Canadian citizen in 1998, but was born in South Africa.

I had my first ‘lump’ in my left breast, two years after the birth of my first child, while still living in South Africa way back in 1981. I remember the sudden urgency and having to sign a form giving permission to remove my breast, if necessary. Fortunately, only the lump was removed with no further scares.

I was well aware of the fact that I had dense breasts and that I had to have mammograms annually.

Initially, (now living in Canada), I had my mammograms at St Pauls, but was then told that I only needed to come every second year. 

In October 2012, (at the age of 58) as I was getting out of the bathtub, the towel slipped as I was drying myself, and as my hand went over my right breast, I felt a lump. As I already had my mammogram booked, I decided to wait for my appointment (was less than two weeks away at the time!). On the day of my appointment, a marker was stuck on my skin where the lump was.

However, nothing was picked up by the mammogram.

I was then advised to go for an ultrasound and then a biopsy, whereupon I was informed that it was grade 0 DCIS and that I had the choice of having the lump removed, or the whole breast, or both breasts. Needless to say, I opted for the last choice, because if I had cancer in my body, I would rather save myself the time and have both removed at the same time, with immediate reconstruction thereafter. The procedure was then booked for end of January 2013 as I did not want to disrupt everyone’s Christmas celebrations and also because the plastic surgeon was going on vacation.

Once my lab results were in after the operation, it turned out that it was not DCIS but that I had hormone positive, Stage 2 Invasive cancer.  I then had to go through a whole string of tests and also had to have some lymph nodes tested for cancer.  Nothing showed up in the lymph nodes and despite having compact dose chemo, and then radiation up to September 13, 2013 and also taking Tamoxifen, the next CT scan showed that the cancer had spread into my hips and pelvis!!!!!

SO WHAT NOW???  Do I scream……, shout……, cry…….., fall onto a heap on the ground and hope to disintegrate before this disease gets a hold of me????

NO, I made a choice not to do any of the above – I was going to rise up above all of this and live my life to the fullest – to stay positive -to live life graciously one day at a time and to tell my story to everyone who wants to listen, because maybe, just maybe, in some small way, I can get to help and encourage SOMEONE ELSE!!!  At least then my journey would not have been in vain.

SO LADIES…!  Be pro-active and find out what your breast density is and prevent a similar story to mine being re-told!

Naomi’s Story

Province: Ontario

Date of Diagnosis: Dec 30, 2014

Age at diagnosis: 52

Time span from normal mammogram to diagnosis: 35 days

Stage at diagnosis: Stage 3 upgraded to Stage 4

How cancer was found: Swollen lymph nodes in neck felt by Naomi

Story Details: My story really consists of 2 problems that got missed using mammogram and ultrasound. In November 2012, I found a lump in my right breast. I was sent for a mammogram and ultrasound. I was told I had cysts and there was nothing to be concerned about. On November 26th, 2014 I went for my 2 year mammogram and got a letter from the Ontario Breast Screening Program saying everything was fine. On December 4th, 2014, I went to see my doctor and showed him 3 swollen lymph nodes on the right side of my neck. I assumed it was an infection, but he said that it was not an infection. He told me I needed to do blood work, have a CT scan and go for a biopsy. On December 11th, 2014, I went for the biopsy. On December 30th, 2014, I was told I had breast cancer, 35 days after my “clear” mammogram. Needless to say I was stunned. On January 2nd, 2015, I met with my oncologist. When I got the call for the appointment I was surprised as to how fast I was getting in. My husband and I had to wait about 1 1/2 hours to see the doctor. He apologized for taking so long and I commented that I was told he had a cancellation. He replied with “I didn’t have a cancellation, this can’t wait.” So starts my cancer story. I went through the whole thing. Chemo, mastectomy, radiation. In June of 2015 when I went for my post op appointment with my oncologist I was told that the cancer had metastasized into my spine and pelvis. My original prognosis was that I was curable but with this news it meant my cancer was now only treatable, not curable. Technically I am now terminal.

So how did breast density affect my cancer diagnoses? In May of this year, I was made aware about breast density and how it can affect mammograms. So I set out on a quest to find out if I had dense breast tissue. I went to my GP and asked to see the reports from my 2012 and 2014 mammograms. The 2012 doesn’t clearly state that I have dense breast tissue, but my 2014 report said “close to a high density breast” and suggests I come back for another mammogram in one year instead of the regular two years. My breast cancer was also lobular which means it originated in the milk producing glands. Unfortunately, lobular breast cancer is also difficult to see in a mammogram. So I believe that the lump I found in 2012 was cancer and due to it being lobular it was missed. The lump I had in 2014 was quite large, 6cm by 4cm so I think it had been growing for quite some time.

Now I am working to get the word out about breast density and what it means. Women need to know if they have dense breasts. Our doctors tell us if we have high cholesterol, or if our sugars are high, they need to tell us if we have dense tissue. If a woman has dense tissue, the protocol should be to send her for an ultrasound to confirm the mammogram findings. As it says on this website, dense tissue shows up white on a mammogram, making it very difficult to see a tumor because it is white too. On the other hand an ultrasound will show a tumor as black. The density will still be white but because the tumor is black you can see it. I still think that mammograms are our best defense in finding breast cancer but women need to be told their density so they can make informed decisions about their breast health. My cancer was missed due to dense tissue and that it was lobular.

I want to stress to women that you need to be proactive about your breast health. When you get the results of your mammogram saying everything is fine, go to your doctor and ask to see the actual report from the radiologist. If you have dense tissue, push for an ultrasound. If you find a lump and you’ve found out you have dense tissue you need to push for further testing even if it means a needle biopsy. Believe me, I’ve had a needle biopsy and it wasn’t that bad. If I had known in 2012 what I know now I would have insisted on further testing even though it might have been scary. If telling my story saves even one woman from going though what I have, then it will be worth it.

Yvonne’s Story

Province: British Columbia 

Date of Diagnosis: Jan. 2016

Age at time of diagnosis: 71

Time span from normal mammogram: 8 months

How cancer was found: lump felt by Yvonne

Story Details: In May 2015, I had a regularly scheduled mammogram, with normal results. I got my letter in the mail and all was fine. Seven months later, at Christmas time, I was taking a shower and felt a lump.  I thought it was a cyst, as I had cysts decades prior and plus it was only a few months since my normal mammogram. I wasn’t overly concerned and went on my planned trip.

After the holidays, in January 2016, I saw my doctor about the lump, and he ordered tests. I had a mammogram, but it did not show anything abnormal.  A subsequent ultrasound showed a small tumor and a biopsy confirmed I had cancer. The tumor was ER and HER 2 positive. I underwent a lumpectomy, chemotherapy, radiation and a year of herceptin. Many years ago, my doctor had told me I had dense breasts. I did not know what that meant. I have since learned that mammograms are not as effective for women with dense breasts. My mammogram missed a cancerous tumour because of my density and I was fortunate to have an ultrasound detect it.  We put our faith in mammography, but for women like me who have dense breasts, mammography is not enough.  Women need to find out if they have dense breasts and be proactive about their health.   

Cathy’s Story

Province: British Columbia

Date of Diagnosis: April 2013

Age at time of diagnosis: 52

Time Span from normal mammogram to diagnosis: 3 weeks

How cancer was found: lump felt

Story Details:  In April 2013, I discovered a very small, pea-like lump on my left breast in the shower. I wasn’t too alarmed as most of these small lumps could be benign cysts.  However, I knew I wanted to check it out with my family doctor.

My family doctor wasn’t concerned at all, but decided I should go get an ultrasound.  I thank my family doctor for this referral to have an ultrasound; after the ultrasound I quickly had a core biopsy. During the core biopsy with Dr. Paula Gordon, I found out that I had dense breasts. I had never heard about breasts being dense or not.  After learning that I have dense breasts, I realized that the mammogram I had just a few weeks prior to my discovery of the lump missed the tumour.  Now I know that mammograms show white for dense breast tissue and cancer cells also show up white, and can easily be missed.

My next visit with my family doctor was one of the darkest days in my life. My husband and I were shocked at the news that I was diagnosed with invasive ductal carcinoma, nuclear grade 2, Stage 1.  I just remember that I couldn’t really focus on the words that my family doctor was saying to both my husband and me…the word “cancer” is such a frightening sound that it made my head spin.  It is just disbelief or denial that runs through your body.

The next step was to get a lumpectomy, and I must say the hardest part is waiting for the surgery.  I had incredible family and friends that supported me and that gave me strength and kept me thinking positively.  I had a lumpectomy on June 3, 2013, followed by 16 days of radiation at BCCA.  I have had a diagnostic mammogram and ultrasound yearly since 2013.

It is so important to find out if you have dense breasts and be proactive. I found the cancer early by myself and thanks to my family doctor and Dr. Gordon for their knowledge and help.  So, please be proactive. Find out from the BCCA Screening Mammography Program if you have dense breasts, and pass on the word to save lives!

 

Mary’s Story

Province: Ontario

Date of Diagnosis: April 2010

Age at time of diagnosis: 56

How cancer was found: Lump under armpit

Story Details: I have lived for 7 years now with Stage 4 metastatic cancer.

After repeated mammograms showing nothing (in my dense breasts), I felt, my GP confirmed, and a May ultrasound proved that I had a massive tumour in my left breast- 6 weeks after the GP had felt nothing.

Further tests in May 2010 – CT Scans and MRI – showed that breast cancer had spread to my skeletal bones. I underwent chemotherapy and 5 doses of radiation on a section of my spine; it was determined then that only scar tissue remained in my breast.

In May 2014, after 6 months of watching and feeling my left breast become hard and enlarged, I underwent a \’toilet\’ mastectomy, This was my surgeon’s term for a mastectomy that must be done to avoid cancer breaking through the skin but not providing any change in prognosis. This was followed by 6 months of the same chemotherapy regime as in 2010. In 2016, 3 tumours were found in my brain. I underwent surgery followed by cyber-knife radiation. I am HER 2 +. In 2010, oncologists recommended and I had 6 months of chemotherapy followed immediately by 5 doses of radiation to my spine where the breast cancer had continued to spread.

Mi- Jung Lee’s Story

I didn’t want to tell our sons because I knew I would start crying and that would scare them. But I could see the fear in their eyes anyway when my husband calmly explained that their mom had breast cancer.They were 13 and 15. In 2013, after I discovered a lump in my left breast, I was diagnosed with estrogen receptor positive breast cancer. After two lumpectomies still showed potentially pre-cancerous DCIS cells, it was time to wave the white flag and get a mastectomy. Three surgeries in four months was not fun, but I didn’t need radiation or chemotherapy. Throughout the emotional journey, I prayed a lot. God comforted me with the support of family and friends. Love reaches into life’s valleys and reminds us of what’s important. Two of my friends had recently had breast cancer. Our “cancer club” went on long walks – – talking all the way, sharing advice: read funny books, watch comedies, don’t search cancer online before going to bed. When I shared my story with CTV viewers, it garnered more response than any other story in my 20 plus years of journalism. I wanted to let women know about a cancer risk that I didn’t know about before my diagnosis: dense breast tissue. My regular mammograms didn’t detect the cancer. That can happen when women have dense breasts – and there are a lot of us. Now there’s a growing movement in Canada to catch up with the US in letting women know if they have dense breasts. When I look back at that difficult time, I focus on what made me grateful: the meals that showed up on our doorstep, the wonderful care I received and the opportunity to raise awareness about a disease that affects one in eight women. I received so much when I had cancer. I hope sharing my story and what I’ve learned can make a difference for others on their journey.”- Mi-Jung Lee, anchor and investigative journalist @ctvvancouver

Janet’s Story

 

Sept. 2015: I had a routine Mammogram in Vancouver, BC. Having fibrous breasts, I generally got checked every 2 years.

Oct.  2015: The mammogram report said “all clear” – see you in 2 years.

Nov. 2015:  During a routine physical exam, my general practitioner detected a small lump in my right breast. He ordered an ultrasound.

Nov. 2015:  Ultrasound was done, confirming there was a small lump. Same day, they also did Tomographic Imaging (a more refined ultrasound). As a result, a breast Core Biopsy was scheduled for the following week.

Dec. 23, 2015: I was called by my GP and told there was need for a lumpectomy.  I was given the name of the General Surgeon at Lion’s Gate Hospital. I had to be very assertive and carve a sure path through lots of red tape and barriers to actually get accepted as his patient. My strategy worked.

Dec. 24-31: During that first appointment with the General Surgeon, I requested (after doing some research) my choice of Plastic Surgeon. That too went very well. I was confident of my surgical team. We thought all this time that only a right breast lumpectomy was called for.

I was still visiting my sister in NJ, USA. My sister thought I should see her own radiologist in NJ for a second opinion.  I had all the copies of recent tests with me. The radiologist looked at all the tests that were taken (on DVDs).  She was shocked that no MRI had been done yet.  She wondered why the left breast had not been more thoroughly checked  with ultrasound and tomography as well. She wrote some very clear suggestions to my Canadian  doctors –  on the margins of my test results. When I returned to Vancouver, I was determined to get that MRI as soon as possible – even if I had to pay at a private clinic. I was also aware that I had to have BRCA testing done – before the planned surgery!  Most would have said this was logistically impossible to do in the narrow window of two weeks before my surgery. I had to move fast and aggressively to convince BC Cancer Agency to speed up their 4-6 week results time.  I offered to pay a $500.00 fee for faster results. I considered going to Seattle for the BRCA test if necessary. Finally, the Director of BC Cancer Agency called me and asked to speak to my General Surgeon. Together, they decided to allow my BRCA test to just be for the BRCA genes.  They usually test for 14 genes and that takes longer.

As for the MRI, when my  General Surgeon heard that I’d booked a private clinic (to a cost of approx. $ 4,000.00) he arranged for my MRI to be at his hospital within a few days of my return from New Jersey.

Before we had the MRI results, my surgeon was recommending a double mastectomy. This news was a horrific idea to me. I felt I really wanted to save one breast. It was a very emotional decision for me. I knew I was working against time and the recommended opinions of my team. When we had the results of the MRI, it was clear that there were actually several small spots of cancer in the right breast. None were apparent in the left breast. Soon after, we had the BRCA test results. They indicated that I was not in the group with a genetic predisposition for future cancers. Thankfully, the plan adjusted to my preference for a single right breast mastectomy and at the same time I would have a Tramflap surgery for breast reconstruction.

All this time, since the positive diagnosis of cancer, I was moving like a train out of control, many phone calls, lots of research and opinion seeking. I found myself wrestling in verbal exchanges about the critical need for more timely test results. I also kept asking the basic question about why since they’ve known for a long time that I have dense breasts that they didn’t as a matter of routine – examine me with both mammography and ultrasound at each examination.

Back and forth, back and forth I went, convinced of my path that was forged in knowledge and urgency. In the back of my mind, I was always thinking about how pro-active and assertive I had to be throughout this process. What would happen to other women who did not question or stand up to medical authorities? What about women who were new to Canada and didn’t have a strong advocate beside them? What about women who are just so frightened and overwhelmed by a cancer diagnosis?

My surgery date was Feb. 25, 2016. A future date for nipple reconstruction was set for Feb. 5 2017. I’m happy to say all of my surgeries had good results. Now, my oncologist makes sure that there are annual mammograms and 6 months later, an ultrasound test for the next 5 years. I am also taking an aromatase inhibitor (Exemestane) for the next 5 years.

As I approached and then went through my cancer surgery, I was totally grateful for the kindness and wisdom of my Cancer Buddies who I met through the Canadian Cancer Society. Phone calls from these amazing women were the foundation of the courage I found throughout my diagnosis and treatment. Of course, my friends and family were another source of strength and love.

One more important part of my story is that I did not have to endure any chemotherapy or radiation treatments. At the time, I thanked my lucky stars. But I know the reality is that there are no guarantees in this game and those of us who have had cancer of any sort do “walk a fine line” with degrees of uncertainty shadowing our lives and our futures. And every day, I tell myself: “Live fully, live in the moment, put things in perspective, take strong strokes and move forward.

Jodie’s Story

 

 I am 49 years old. I’ve been having annual mammograms since 40. I was always told that my breast tissue was very dense, but I had no idea of the implication, or how this might affect me and the chances of being diagnosed with breast cancer. I had felt a lump in my right breast for a long time (years?), but never worried as I was religious about getting my mammogram. In March of 2016, (I was just about to turn 48), I went to my doctor because a dimple appeared in the same area of this lump when I lifted my right arm. A mammogram was ordered, and it came back negative, and so I no longer worried. In October of 2016, the lump was still there, but the dimple appeared all the time. I went to my doctor again, who then ordered an ultrasound. Again, I wasn’t worried: I had done due diligence by having my annual mammogram, right? I should have realized something was amiss, as the ultrasound tech looked at me and asked when I had last had a mammogram-she then counted up on her fingers to realize that it had been 7 months earlier. They requested a mammogram immediately. I later learned from my GP that the cancerous lump was quite evident on the ultrasound, but even on the same day, they were unable to locate it on the mammogram. I now know that is because my breast tissue was too dense. By the time I had a biopsy, I was experiencing nipple discharge. I was diagnosed with Invasive Ductal Carcinoma-Stage 2 although some doctors say Stage 3. Post surgery revealed 4 out of 16 axillary nodes were affected as well. A mastectomy, 6 rounds of chemo and 25 rounds of radiation later, I am okay…a different person mind you! I am on Tamoxifen, an anti-hormonal drug for the next 10 years as well as Zolodronic Acid to prevent the cancer from spreading to my bones.

What would I have done differently had I known that dense breast tissue is an increased risk factor for breast cancer? Knowing that my breasts were so dense, why wasn’t I offered an ultrasound? Had I known the correlation, I would have most certainly have insisted. My breast cancer could have been caught so much earlier! Doctors are unaware or unwilling to accept the correlation between breast density and breast cancer. I just had an oncologist tell me that breast density was NOT a risk factor. Now that I am well, and trying to move forward in my journey, I am still fighting with doctors and the medical system to give me a simple ultrasound on my left breast. They all think that by ordering a mammogram, I am okay! As you can imagine, that is not very reassuring, and they don’t seem willing to accept that. Please ladies, ask your doctor about breast density, and insist on an ultrasound if you feel it is warranted! Everyone says to be your own advocate. This is imperative, as is being informed!
Here is a picture of my mom and I after completing Run for the Cure this October. Mom is also a breast cancer survivor (coincidentally, she too was always told she had dense breasts!)

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