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!
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.
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.
It is with great sadness that we write about Nancy’s death on November 15, 2018. Nancy died from complications related to bone marrow cancer that was a result of her aggressive chemotherapy 13 years ago. She will continue to inspire us.
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.
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.
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.
Province: British Columbia
Date: Oct. 2012
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!
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.
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.
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!
Date of Diagnosis: April 2010
Age at time of diagnosis: 56
How cancer was found: Lump under armpit
Story: 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.
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
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.
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!)
Trisha’s dense breasts- can you guess which one has cancer? No? Neither can radiologists!
Every time I think about the destiny that was planned for me by a healthcare system I trusted, the words of an Ed Sheeran song play in my head, “Memories of a life that’s been loved…but mum, there’s a tear every time that I blink…oh, I’m in pieces, it’s tearing me up, but I know a heart that’s broke is a heart that’s been loved.” These words haunt me. Is this what my daughter would have played to console her of my loss? Are these the words that will play for other moms across the country that didn’t get lucky like me? Why should I ever have had to contemplate this at all? The health authorities knew I would probably die and said nothing. The technology to save me was available. They know that 800,000 other women like me are out there and they aren’t saying anything to them either. Instead, their children will get to clean up the Supermarket Flowers that have died, flowers they were given for their moms. Flowers that should have never have had to be bought.
I had significantly dense breasts and a close family history of breast cancer. Untreated and not properly monitored, this combination was a death sentence for me and they knew and said nothing. Every time, I had a mammogram – in three provinces, all three health authorities failed to tell me my breast density was a significant independent risk factor for breast cancer and combined with my family history, I was at high risk for breast cancer. I thought at first I slipped through the cracks, but it turns out the health authorities have known for a long while. 1976 was the first time research confirmed this significant risk and for years research has piled up confirming it over and over. But the health authorities have remained silent.
Mammograms were successful in showing I had very dense breasts, but they were never going to reveal my breast cancer, not until it was too late anyway. I got very lucky by fluke a bone scan revealed soft tissue uptake in my right breast, so when the mammogram falsely revealed no cancer, they were forced to dig deeper and looked at my breast with ultrasound, but still nothing. Luckily, they couldn’t leave the bone scan unexplained and well, my mother had breast cancer twice before 50, so I was sent for a MRI. It revealed the truth, I had suspicious masses in my breast after all and a biopsy confirmed it was cancer. In fact, I had 10 masses – both invasive lobular and ductal carcinoma, but the mammogram was blind to it all. It could only see white, that could be just dense breast tissue or both cancer and breast dense tissue. Ironically, at 40, I started the breast screening program and was declared clear of cancer despite the time bomb growing in my chest.
I’m mostly just angry now, that I was one of the ones chosen to die. Angry enough that I want every woman in Canada to know that you need to ask about your breast density, so you know your risk and can make informed healthcare choices for yourself. It’s not right that they know you are probably going to die unless treated and say nothing. Their complicit silence is deafening and your children don’t want to be left with your dead Supermarket Flowers, they just want you. Force them out of their silence and ask how dense are my breasts?
Looking back now, I credit the Algonquin Hotel in St. Andrews, New Brunswick for helping me find my breast cancer. I was attending a conference at the hotel and gearing up for a busy day when I hopped in the shower. The hotel showers do not have those puffs that I use at home to wash myself. Instead, I grabbed the hotel bar of soap. My soapy hand grazed over the underside of my left breast and there it was. The dreaded lump. And it was big — just a wee bit smaller than a golf ball. How the hell did I not notice that before? I poked and prodded at it as if that would make it go away. I swallowed my panic. It can’t be cancer, I told myself. It’s just a cyst. It’s fine. I just had a clear mammogram four months earlier for God’s sake.
It was not fine. It was cancer and all I could think was: this cannot be happening to me. I have two daughters who need me. I’m too young. I’ve been to Hell and back since then — breast surgery, 16 rounds of chemotherapy, six weeks of radiation and now hormone therapy. Rarely a day goes by that I don’t think about what would have happened if I didn’t go to that hotel without the puff. What if I didn’t find the lump for another several months and the cancer had spread to my lymph nodes and bones? Would my daughters be paying tribute to their dead mother by writing my name on the back of their shirts at the Run for the Cure?
So, ladies, take a lesson from me: even if you have regular mammograms, check your breasts for lumps once per month, especially if you have dense breasts. Lumps are easily missed on mammograms if breasts are dense. Knowing that I had dense breasts may not have prevented me from getting cancer, but I would have been more diligent in monthly self-exams and would have talked to my doctor about how I was screened and how often. Your breast density matters. You need to be your own breast health advocate. Ask about your breast density, be vigilant with your self-exams and talk to your doctor about what screening methods are right for you. I’ll never know how earlier detection would have changed my treatment or prognosis. I do know this for certain: If I had known I have dense breasts, I would not have left my breast health to chance. And take it from me, neither should you.
Please watch Kathy
Date of Diagnosis: Aug 4, 2014
Time Span from normal mammogram to diagnosis: 4 months
Story: I went for my regularly scheduled mammogram in April of 2014. The notice I received for my appointment for my mammogram stated that I was to be screened annually because I had dense breast tissue. This was the first time I had heard that term. When I had my mammogram in Regina, I told the tech that my letter stated that I had dense breast tissue. After having the mammogram and looking at the film, she said yes, “dense breasts.” I had no idea what this meant for me, but I was to find out soon.
I received a letter from the screening centre stating that my mammogram results were normal, with no mention of my breast density. I had my annual physical with my GP and he noted that my mammogram results were normal and there was no need for a breast exam. Again, no mention of breast density. Fast forward to June of 2014 when I found a lump while showering. I made an appointment to see a different GP, as mine had moved to different city. She felt the lump but didn’t seem overly concerned as I had just had a normal mammogram, but she did refer me for further testing. Because of the normal mammogram results, I procrastinated in getting the next level of testing. I had an ultrasound completed near the end of July. After receiving a call from the doctor’s office, I was sent for biopsy and this confirmed IDC Grade 3 on Aug 4,2014. What a punch to the gut.
In reviewing my test results from the mammogram and ultrasound, the biopsy was only completed because the radiologist could feel the lump which wasn’t visible by mammogram or ultrasound. I had my mastectomy on Sept 9, 2014 and my pathology showed a 3 cm lump as well as 2 positive lymph nodes with extra capsular extension. I was staged at 2B, ER + PR+ and Her 2 -. My oncologist recommended chemotherapy and radiation, as well as the aromatase inhibitor Letrozole. This was no doubt one of the toughest years of my life and I am grateful for the excellent care I received from the Allen Blair Cancer Centre in Regina.
My biggest concern is for the other women out there with dense breast tissue that are unaware of the dangers associated with dense breast tissue. In posting my story hopefully the message can be sent to be an advocate for your own health, do monthly self-exams, ask when you have your mammogram if you have dense breast tissue. Don’t be afraid to ask questions and educate yourself. Mammograms are a great tool for some, but for us who have extremely dense breast tissue, they are not enough. I am now screened annually by MRI. So far, I am one of the lucky ones. My life is back to normal and I am hoping that BC is in my rear-view mirror!
Province: British Columbia
Date of Diagnosis: 2014
Time Span from normal mammogram to diagnosis: Close to 1 year
Story: I would very much like to stress the importance of women being proactive with their health, especially when it comes to their breasts. Mammograms are important, but they don’t catch everything, especially if you have dense breasts.
I was diagnosed at age 52 with stage 3A DCIS breast cancer.
I had dense breasts and was told by the technician doing the mammogram that it makes it hard for radiologists to determine what they are actually seeing. My left breast was on their radar for a while, but they kept saying they were cysts. I trusted they knew what they were looking at.
In 2013, sometime around September/October, I began experiencing extreme fatigue, and what I can only describe as “zings” ….like stabbing pain that lasted seconds. I put it down to stress, and that time of the month, and let it be. In March of 2014, I stepped out of the shower, and in the mirror, I saw a “bruise “on my breast. I had read and heard enough that I knew immediately what I was looking at. I prayed I was wrong. I went through all the appointments with doctors, more ultrasound and mammogram. I was sent to a surgeon who has done many mastectomies, and she said to me…” you can wait 6 months for another mammogram, or you can let me do the biopsy right now”, and I opted for right now. It came back positive for cancer. My tumor was 9 cm and covered the whole outside of my left breast. Yet it was missed because of dense breast tissue. I had 8 rounds of some pretty heavy chemo, they wanted to hit it hard, and boy did they. It did the trick though, shrunk that tumor, but, it was still decided because of the size, and the advanced stage that I was still to have a mastectomy, and then do radiation.
Fast forward to 2016. When I started feeling the same things in my right breast, I went to my family doctor who helped me get the appointment I needed for ultrasound. Imagine trying to explain a feeling to people who need proof. I saw a radiologist who refused to do a biopsy, as he said it was too small, and would not do it. I was sent to a surgeon who decided I needed to have another ultrasound, and sent me to a female radiologist…. very lucky for me. She was thorough and saw a shadow she didn’t like. There was no lump, it was a shadow. She did a biopsy on it, and it came back DCIS. The surgeon was giving me my options when I Interrupted and said I just wanted a mastectomy. He agreed, so now to wait again. Once the pathology came back on the tissue, it was determined to be LCIS and not DCIS, so no treatment as it is technically not breast cancer, but, had that come back first, I likely would not have had the option of surgery. How long until those cells do turn cancerous?
I’m hoping that by telling my story, that women will be more proactive, and advocate more for themselves when they believe something just isn’t right, especially when you have dense breasts. Don’t back down just because they tell you it’s nothing to worry about- they are not in your body…. you are. Please take care of yourselves.
Date of Diagnosis: 2013
Time Span from normal mammogram to finding the lump: 6 months
Story: In February 2012, while putting on lotion, I felt a small, hard lump in my right breast. I didn’t worry too much about it, since my breasts had been lumpy for as long as I could remember. Nonetheless, I called my gynecologist to get it checked out. He examined me and said it was a gland. When I mentioned that it felt different, as it didn’t go down following my period, he told me the gland just didn’t drain. He also noted that my mammogram from August, 2011 had come back normal and that I didn’t have a family history.
A little less than a year later, I went back to see him, as the mass was growing and was now visible. Again, he told me it was a gland, adding that it was moving and not attached to any part of my body. He finally decided to send me for an ultrasound. I remember feeling anxious and asking if I should be concerned. He said it was a type of cyst, adding that the ultrasound would tell us if it might continue growing, in which case I should get it removed.
I called the hospital that same day and scheduled an appointment for an ultrasound on April 10, 2013. I was informed that a mammogram would be performed as well. On that day, I asked my husband to accompany me. I think a part of me knew. Following the ultrasound, I was asked to stay for a biopsy that same day, or schedule one for that week. Panic had set in, and I got it done that day. A marker was placed in my breast, I was sent for a second mammogram, and told to come back nine days later for the results.
Unable to cope with the anxiety of not knowing, I went to a private clinic two days later, and was diagnosed with Stage 2, Grade 3, ER+ PR+ HER2+ breast cancer…a year after first consulting my doctor. Chemotherapy started promptly. Everything that was happening was completely out of my control. I felt anxious, distraught. I was lost. When it came time for surgery, I opted for a bilateral mastectomy, to minimize my chances of recurrence, and had reconstructive surgery. The cancer was HER2+, which meant that I would be receiving Herceptin for one year. I was in treatment for fifteen months.
I learned that I had dense breasts much later, when I obtained a copy of my 2011 mammogram. I wasn’t notified, nor was I informed that women with dense breasts have an increased risk of developing breast cancer. Dense breasts affect the accuracy of a mammogram, since both dense tissue and cancer appear white on mammograms. I wasn’t told. I should have been sent for further screening.
Why aren’t women better informed? Why is this not common knowledge? We know that early detection is so important…yet, it doesn’t seem to be enough to significantly change the way women with dense breasts are informed, guided and screened. I wish I had been diagnosed at an earlier stage, but we can’t go back in time… I feel very strongly that things need to change. Doctors need to be honest and transparent when it comes to breast density, and everything associated with it. Women with dense breasts have the right to adequate information, as well as proper and efficient screening.
En février 2012, en appliquant de la lotion, j’ai senti une petite masse dure dans mon sein droit. Je ne me suis pas vraiment inquiétée, étant donné que je sentais toujours des bosses dans mes seins, mais j’ai tout de même décidé de prendre un rendez-vous avec mon gynécologue. En m’examinant, il m’a assurée que c’était une glande. Quand je lui ai mentionné que la masse ne diminuait pas à la suite de mes règles, il a simplement dit que la glande ne drainait pas. Il a également mentionné que ma mammographie (août 2011) était normale et que je n’avais pas d’antécédents familiaux.
Un peu moins d’un an plus tard, je suis retournée voir mon gynécologue; la masse avait grossi et était maintenant visible. Il m’a de nouveau dit que c’était une glande, qu’elle bougeait et n’était pas fixée. Il a finalement décidé de m’envoyer passer une échographie. Me sentant anxieuse, je lui ai demandé si je devais m’inquiéter. Il m’a immédiatement rassurée, me disant que c’était un kyste et que l’échographie déterminerait s’il devait continuer à grossir. Dans ce cas, il recommandait que je le fasse enlever.
J’ai immédiatement téléphoné pour prendre un rendez-vous, prévu pour le 10 avril 2013. On m’a informée que je devrais également passer une mammographie. Suite à l’échographie, une biopsie a été prescrite, et faite la journée même. Un marqueur a été placé dans mon sein; j’ai dû passer une seconde mammographie et j’ai été avisée de retourner à l’hôpital neuf jours plus tard, afin d’obtenir les résultats.
L’attente était insupportable; j’ai donc pris la décision de consulter en clinique privée. Deux jours plus tard, j’ai reçu un diagnostic de cancer du sein triple positif, stade 2, grade 3…un an après avoir consulté mon gynécologue. J’ai commencé la chimiothérapie peu après avoir reçu mon diagnostic. Je me sentais anxieuse, désemparée. Tout ce qui m’arrivait était hors de mon contrôle.J’ai opté pour une mastectomie bilatérale, afin de diminuer mes chances de récidive, suivie d’une reconstruction mammaire. Étant donné que le cancer était HER2+, j’ai été traitée par Herceptin pendant un an.J’ai appris que j’avais les seins denses beaucoup plus tard, en consultant mon rapport de mammographie datant de 2011. Mon gynécologue ne m’avait pas avisée. Je n’avais pas été informée que les femmes ayant les seins denses ont un risque plus élevé de développer un cancer du sein, ni du fait que les tissus denses paraissent blancs à la mammographie, tout comme un cancer, ce qui la rend moins précise. J’aurais dû être envoyée passer d’autres tests.
Pourquoi cette information n’est pas donnée aux femmes? Nous savons qu’une détection précoce est favorable; pourquoi ne pas informer les femmes au sujet de leur densité mammaire, et tout ce que cela implique? Les médecins se doivent de faire preuve de transparence et vigilance quant à la densité mammaire. Les femmes qui ont les seins denses doivent être avisées et informées de ce que cela implique, et les tests de dépistage adéquats doivent être prescrits. Il n’y a AUCUNE raison valable de garder cette information secrète.
Province: New Brunswick
Date of Diagnosis: 2013
How was cancer found? Lump felt 14 months after a normal diagnosis
Story: I met a friend at a local farm market on September 4th, 2013. She was out socially for the first-time post-mastectomy. The next morning, I was in the shower and remembered how diligent I used to be with self-examination, but since menopause I had been relying on mammograms every two years. As I ran my hand over my left breast, I felt a hardened ridge and I will never forget that overpowering sense of horror. I knew without a doubt I had breast cancer. I, who had never smoked, never drank alcohol and had no family history, came running out of the bathroom stark naked and yelled at my husband, “Feel this. Feel this.” Even though he stayed calm, I could see in his eyes he knew too. I was always told I had lumpy breasts or cystic breasts. When I had had my mammogram the year before, the technician had said “Do you know your left breast is larger than your right?” There was no mention ever of dense breast tissue or follow up with ultrasound at any time.
On November 4th, I had a double mastectomy after being diagnosed with Invasive Ductal Carcinoma, Stage 2, with lymph node involvement and also very early stage ductal carcinoma in situ in my right breast. I could have chosen lumpectomy for my right breast, but I was not comfortable with that. The pathology post-mastectomy in my left breast showed another tiny tumour which had never appeared on any scans. Thank God for a surgeon who insisted on a mastectomy. When I asked my surgeon why the mammogram had not picked up the tumours, she mentioned dense breasts. That was my AHA moment. I had 6 rounds of chemo at our wonderful oncology unit in Fredericton followed by 25 rounds of radiation in Moncton. I was Estrogen/Progesterone positive and have been taking Tamoxifen. Please tell your friends do not stop examining your breasts and find out what your breast density is and insist on ultrasound if it is higher than 75%. It may save your life. Please spread the word.
Date of Diagnosis: 2014
Time span after a normal mammogram: 14 months
Story: I had been having annual mammograms since I was in my 30’s because of the number of women on both sides of my family who had been diagnosed with breast cancer. Year after year, the mammograms came back clear and I was assured that I was cancer free. In September 2013, I felt a small lump in my left breast but did not visit my physician as I was going for my annual mammogram soon. I mentioned the lump at the time of my mammogram in December 2013, when 2 areas of concern were identified. An ultrasound guided needle biopsy in January 2014 indicated two invasive ductal carcinoma tumours, ER and PR positive and HER2 negative. I had a modified mastectomy and sentinel node biopsy in February 2014. Following my surgery, the pathology report indicated that I had 3 invasive carcinomas, ductal carcinoma in situ, lobular carcinoma in situ, and calcifications. Fortunately, all of the lymph nodes tested were clear. I still found myself wondering how it was that I could have clear mammograms year after year and then, suddenly, a breast so full of cancer that I couldn’t even consider a lumpectomy. At the time, I had no idea that my breasts were dense and did not know enough to ask about my breast density status. Fast forward 4 years to the spring of 2018, when I discovered small lumps near the site of my initial mastectomy. The technician was able to feel one of the lumps when I went for my annual screening mammogram of my right breast and so I had a diagnostic mammogram of both sides. There were no suspicious lesions or microcalcifications present on mammogram. But wait, what is this? The report mentions “Type III tissue density pattern”. Hmmm…. I wonder what that means? No one has ever told me about density patterns before. I will need to look that up when I get home… On the same day, the technician fits me in for an ultrasound of my mastectomy site and my right breast. The ultrasound finds small, hypo-echoic lesions in my left and right underarm areas and in my right breast; likely benign cysts. They did not show on the mammogram and so now I find myself waiting for an MRI at the Centre for Breast Health in Saskatoon. I have already met with a surgeon and he has recommended a second mastectomy regardless of the MRI results given all of my “disease markers”. Still, no mention of breast density. Thank goodness for the internet and the work of Dense Breasts Canada. I am finally starting to put the pieces together – my initial cancer didn’t just show up out of the blue, it was likely taking it’s time and growing undetected. All that time, and not one person on my medical team informed me of my breast density status or what it could mean. My fingers are crossed for benign cysts, but I am more educated now and making an effort to get the information out to others. I am sure that is what my mother, who died of secondary bone cancer 14 years ago, would want me to do.
Province: British Columbia
Date of Diagnosis: 2017
Stage at Diagnosis: 2
How was cancer found: lump felt
I was originally told I had dense breasts about 8 years ago (2010). After having my screening mammogram, the tech asked me to wait while the radiologist checked the film. “Nothing to worry about, you just have dense breasts”, she assured me. I was 53.
Come February 2017 I discovered a lump in my left breast. I had cysts twice before in my breasts so I wasn’t worried. “It’s another cyst” I told myself, but still booked a visit with my GP. In March 2017, I had a diagnostic mammogram, ultrasound then biopsy. Then the diagnosis. Aggressive, invasive, stage 2, grade 3, ductal adenocarcinoma. Two weeks later I had my left breast and two lymph nodes removed.
In true organizational fashion, I began my binder of reports, literature and handouts. I requested the reports of my 2013 and 2015 mammograms. This is when I discovered that my breast density was 3 ( number 3 corresponds to Category C/ heterogeneously dense breasts/ 50-75% density). Wow, something so important was a tick box and this didn’t even get a mention on the report sent to my GP. Actually, not even a report, a form letter which includes the following statement “Some cancers cannot be detected in a mammogram due to the location of the cancer or the density of the breast tissue.” Geez! And I’m a 3 out of 4 and my GP isn’t even made aware!!
I was also shocked when I read my radiation oncologist’s consult where she noted that “the 2.5 cm well circumscribed mass” was larger on the 2017 mammogram and ultrasound than in the 2015 mammogram. WHAT?!?! So that tumour was there in 2015, but unseen. I was stunned!
I endured chemo, radiation and am taking letrozole for the next 5 years as the cancer was estrogen receptor positive. But, I am considered cancer free!
Since learning so much about breast density from Dense Breasts Canada, I take every opportunity to educate women (and men) about breast density. Sitting in the hot tub at the pool after Aquafit, catching up with friends over tea, our local Facebook support group for breast cancer warriors. Wherever there are women with breasts, I talk! “Request your density!!”
Province: British Columbia
Date of Diagnosis: 2017
How was cancer found: lump
I was diagnosed in early July 2017. I was 51 years old, a police officer, wife and busy mother of a 15-year-old daughter. I didn’t have time for cancer. 6 months earlier I had some calcifications detected in my left breast by mammogram. They were biopsied, and I was assured they weren’t cancer but rather an abnormal “pre-cancer” type cell. I saw a surgeon and was offered the choice of getting a wire excision to remove them or watching them carefully with mammogram. I took a couple of months to think about it, and while doing so, one day in the shower felt a large hard lump in that same breast that hadn’t been there before. I had been told a few years ago with my first mammogram that I had dense, “cystie” breasts and had been to my doctor with suspicious lumps in the past, but she always had assured me they were nothing, and in fact they all went away on their own. When I went to see her, despite her best poker face, I could tell that this one concerned her. A 3D mammogram and ultrasound ensued. The mammogram showed clear, but the ultrasound clearly showed a mass that had grown to 2.8 cm, as well as a suspicious lymph node. After biopsy and blood test, bone and CT scan as well as MRI I was diagnosed with Stage IIb hormone positive breast cancer.
Two lumpectomies, 8 rounds of chemo and 16 radiation treatments followed. I am now on Tamoxifen for the next few years. Years before when I was told in passing of my breast density by a mammography technician, I thought nothing of it. I didn’t realize that there were implications that went along with that and I don’t even think I mentioned it to my doctor. I just didn’t know. Why didn’t I know???? I consider myself very lucky so far, but women need to understand the risks and implications of dense breasts. I would have certainly sought out regular ultrasounds and my cancer may have been found much earlier.
Date of Diagnosis: February 2018
Age at time of diagnosis: 64
Time span from normal mammogram: three consecutive normal mammograms
How was cancer diagnosed: Via ultrasound, after feeling the lump…for three years…
Story: I felt what I thought might be a lump in my breast about three years ago. I brought this up to my family physician, and he felt it as well, and we booked a mammogram. It came back clear, but saying I had dense breasts…ok……so it’s clear.
A year later, another mammogram, again, it’s clear. In January, I’m in the doctor’s office and telling him that the lump has become painful, and problematic for me…the locum in the office looks at me and gruffly asks, “Why haven’t you had an ultrasound?!!” All I could tell her was that it was never even suggested.
I had the ultrasound and in five minutes, the radiologist was in the room, telling me to get over to the hospital that morning for a biopsy. Yep, cancer. In April, both of my breasts were removed. It’s a relief that the cancer was removed, and I don’t have breast tissue that can get breast cancer…but, I don’t have breasts, I have chronic pain, and I’ll always wonder what the steps taken would have been had it been diagnosed three years earlier. At no point, did anyone say, “you have dense breasts, we feel the lump, let’s get you an ultrasound”, until that locum in the doctor’s office in January.
If she hadn’t been there, I’m going to bet that tumor would still be in my breast.
This is a travesty. I’m educated, work full time as a professional, and am quite capable of advocating on my own behalf. But I have to have the education to know what to be demanding of my caregivers. And WHY did my primary physician just write off the clear mammograms for three years? We’ll never know. Let’s make it better for women going forward.
Date of Diagnosis: February 2016
Age at time of diagnosis: 47
Time span from normal mammogram: one day
How was cancer diagnosed: Noticed change/ultrasound
Story: For my entire adult life, I was aware that my breasts were very ‘lumpy’. I was not large chested, and I could feel many bumps and rope like tethers – especially on the right side. The left side was lumpy too, but those lumps felt easier to ‘memorize’. I breastfed on my right side and it was a much bumpier ‘mess’. I was vigilant, asking my GP at each visit what things felt like to him. He always chalked the lumps up to fibrocystic disease, and that was that.
In 2014, my GP sent me in for imaging in response to my concerns about how rope-like my right breast was. At that time, they saw microcalcifications and called me back for a biopsy. Thankfully, the biopsy was negative and I was relieved. One year later in 2015, I felt some round lumps in my right breast and my GP sent me in for a mammogram, as he felt these might likely be cysts (note: no ultrasound was ordered). At that time, the mammogram showed these cysts and was negative for any malignancy; I was once again issuing a happy “phew!” to myself.
Fast forward to late January 2016, and once again I’m at my physician’s office for a yearly exam. He didn’t feel much had changed in my usual breast landscape of bumps and ropes. I should add as an aside here that I’d noted some slight yellow discharge from my right side nipple for months. I forgot to mention this to my doctor when I saw him, so I called the office back 2 weeks after this physical. At that time, the nurse said she’d mention the discharge to my doctor; she called back and said he wasn’t concerned about it.
Four months later – in May – I was in a change room with arms above my head, removing a dress. I noticed the shape of my breast had changed since that January visit to the doctor; it looked larger and more swollen on the upper right quadrant. I was concerned and went back to my GP who agreed that perhaps it would be a good idea for some further imaging. Thankfully, two weeks later I went for a mammogram and ultrasound on the same day.
My mammogram showed nothing – all clear. I walked across the hall and had my ultrasound, after which I received a call 2 days later telling me the news no one wants to hear. I was ultimately staged at 3a hormone positive, Her2 positive ductal carcinoma, with nodal involvement (under 2018 ASCO staging guidelines, I’d likely be stage 2b).
Throughout the years of my imaging, I was told that it was hard to see into my breasts with mammogram, with the proverbial “it’s like looking for a polar bear in a snowstorm.” But at NO point did ANY technician, radiologist, doctor tell me that I should always have additional imaging alongside my mammograms due to my breast density. And I certainly was never told that increased density was a significant risk factor for breast cancer. I learned this all on my own after I was diagnosed. Even AFTER diagnosis, technicians and radiologists would squint at the screens because it was incredibly difficult to see the actual cancer amongst all the supportive normal tissue.
I am convinced that had I received an ultrasound (or MRI) in the year between my biopsy (2014) and my ultrasound that diagnosed me (2016), my cancer would have been visualized. Those microcalcifications were very likely the harbinger of cancer starting to form. These were in the exact same location as the mass that eventually developed. I am disappointed in myself for not thinking to demand an ultrasound be done in conjunction with the mammogram in 2015, and I’m disappointed that the professionals didn’t think to be a bit more careful with me given a) my history of microcalcifications and b) my extreme density.
Every woman needs to know HOW dense her breasts are. She needs to know how this is related to increased risk of breast cancer. She needs to know how to pursue the thorough imaging she needs and deserves if there is some change occurring within her breasts. She needs to know that no matter her age, breast cancer can happen. It will be a lot less likely that breast cancer is the culprit at age 25, but it DOES happen. I know many women who were diagnosed in their 20’s and 30’s. I’m so thankful for all the research that is taking place in the realm of breast cancer.
I also appreciate the monumental costs and resource allocation associated with screening all women; our medical system can’t easily accommodate it. But the cost of cancer treatment (surgery, 8 rounds of chemo, 35 rounds of radiation, Herceptin if you are HER 2 positive, hormone therapy daily for 10 years, Zometa infusions every 6 months) far outweighs the cost of one investigative MRI. The cost to our families and well-being far outweighs the cost of 1-2 extra images. There isn’t a dollar figure you can assign to the kind of trauma this diagnosis brings to a person’s life. EVERY new and unchanging or growing lump or bump or rope or mass must be EXPLAINED. No matter our age. So yes, I fully support the Dense Breasts Canada movement toward women having more knowledge about their own bodies. Toward the medical establishment acknowledging and proactively serving those who are in higher risk categories.
Date of Diagnosis: 2017
Time span from normal mammogram: 6 months
How was cancer diagnosed: Lump felt in shower
Story: I first learned that I had dense breasts in 1999. I was just 36 years old and I found a lump in my right breast. After my first-ever mammogram, I was told it was not cancer, but that I did have dense breasts. Nothing further was said, but I do recall thinking it was kind of cool that I had dense breasts. Somehow, I took that as acknowledgement of my healthy, fit physique. Eventually the lump did go away on its own.
Eighteen years later, in June 2017, I discovered a lump in the same breast while in the shower. I had just had a clear mammogram 6 months earlier as part of the bi-annual screening program, so, I thought it was probably just another transient lump. Its sudden appearance made my GP think it was just a cyst. To be safe, though, I was sent me for another mammogram, plus an ultrasound on both breasts.
Two weeks later, I was told the results were “worrisome”; then, after another ultrasound and a biopsy it was confirmed: cancer. The tumour was about 2.5cm, and there were some “likely malignant” lymph nodes.
Even though I had started to prepare myself for the worst, hearing those words “you have cancer” shook me to my core. The doctor told me that the cancer had been there for quite awhile. It was likely missed on the mammogram because of my heterogeneously dense breasts.
My first thought was anger that my mammogram letter said “normal” when obviously it wasn’t. My second thought was absolute fear for my daughters, aged 22 and 25 and how they would take the news – and if I would be around for them much longer.
After the news settled in, I realized how much I didn’t know and how much I needed to know if I was going to fight this disease. From that point on, I would not rest on my laurels, nor rest with any false sense of security.
My first surgery was a lumpectomy and sentinel node biopsy. The pathology report revealed that I had triple negative breast cancer, Stage 3, and aggressive grade 3. I remember being so angry – how could I go from a clear mammogram to a stage 3 diagnosis in just 6 months?
Shortly after I started chemo, I discovered another lump in the right underarm area. Another ultrasound confirmed that there was cancer in more lymph nodes. I was told another surgery would be needed when I was finished chemo to remove about 17 more lymph nodes. Could things get any worse?I had my second surgery in January 2018. By this time, I had learned a lot about breast cancer and had also had genetic testing done. I asked for, and received, a prophylactic bilateral mastectomy (no reconstruction). I felt that, given a previously missed tumour, some possible genetic abnormalities, plus the aggressiveness of a difficult to treat type of breast cancer, I did not want spend every day for the rest of my life wondering if the cancer was back, and if it was going to be “missed” again.
My treatment plan finally wrapped up with 25 rounds of radiation, completed in April 2018.I honestly feel that my treatment could have been less extensive and aggressive, had I not received such a late diagnosis. I can’t help but believe that it would have been an altogether missed diagnosis, and I may not be here today, if I were to heed the current guidelines that suggest not doing self examinations.
Thank you, Dense Breasts Canada – you have shed a lot of light for me, and my daughters, on the importance of knowing one’s body and trusting one’s instincts.
Province: British Columbia
Age of Diagnosis: 49
Time span from a normal mammogram: a few weeks
How tumour found: on own
Misha’s Story: I found a malignant, triple negative tumour in my own breast in 2012, at age 49, a few weeks after receiving an “all clear” letter from the diagnostic mammography program I’d been examined by yearly since surgery for a large adenoma in 1999. I’d been told once years before by my GP that my breasts were dense but without any explanation of the implications of that – the possibility of increased risk of breast cancer and decreased effectiveness of mammography. It seems like there are a lot of women in the same boat…
I was lucky – I’m a social worker and educator in palliative care and had previously taught breast exam at the medical school in Calgary, so I knew immediately when I touched the lump that it was trouble. My GP, who was a peripheral colleague of mine, and sometimes talked about people as “the worried well”, was away. I’ve wondered if she would have told me I’d just had a mammogram and was worrying about nothing; if so I’d be facing a very different scenario now, if I was alive at all.
For whatever reason, the walk-in doctor took my concerns seriously. She was amazing -advocating with the head of radiology to take another look at my films (the tumour actually was visible because of its location in the axilla when they did), and arranging an urgent ultrasound which, along with core biopsy, confirmed the presence of cancer. By the time of surgery, less than a month later, the tumour was in the process of accessing a blood supply and attaching itself to my chest wall.
The surgeon was compassionate and thoughtful, giving me articles to help with decision making, explaining how to assess a lump’s mobility not only by moving it side to side but also by attempting to lift it away from the chest, and showing me how to do breast self-exam with the entire flat surface of three fingers so as to more effectively sense the difference between the lump and the surrounding tissue. I required a small piece of my chest wall removed, and because the first lymph node in the adjacent chain appeared diseased, an axillary dissection with sixteen nodes removed as well. Fortunately, subsequent testing showed that the tumour (not quite 2 cm) had not yet metastasized.
The next five months involved an aggressive regime of biweekly chemotherapy infusions and immune boosters, followed by a month of radiation treatments – in total fourteen months off work. I am deeply grateful for the care I received, and glad to be alive; and yet I am not left unscathed – I had several years under the care of a hematologist monitoring whether the treatment had left me with leukemia and observing my blood counts which have never fully recovered. I deal with persistent low-grade arm lymphedema and ongoing neuropathic changes in my fingers and toes (numbness and tingling); last year I required another surgery for a small radiation-induced tumour at the scar site.
With so many women believed to have dense breasts, and with my own experience, I feel deeply frustrated by the short-sighted and patronizing suggestion that women rely solely on mammography and not bother with breast self-examination. I have so much gratitude for the work of Dense Breasts Canada for their advocacy and recent success with the BC government agreeing that women should be notified about their breast density and have access to ultrasound assessment as well as mammogram if their GP requests; I hope this change soon spreads across the country. Thank you DBC for all you do!