Survivor shares how cancer is missed after 17 mammograms

Real Women. Real Stories. Sue Van Duinen

Sue

GRAND RAPIDS, Mich. (WOOD) – WOTV 4 Women is committed to educating women about a new law going into effect on June 1, 2015 that will require doctors to tell women if their breast tissue appears dense on a mammogram.  West Michigan breast cancer survivor Sue Van Duinen helped advocate for the change, after she developed cancer was never informed of her density.  She had nearly 17 mammograms that came back “normal” before she received her diagnosis and it’s hard to say how long the cancer had actually been hiding in her dense breast tissue.  Had she known she was dense she could have requested additional tests and advocated to know more, perhaps catching the cancer even sooner.   Sue shares her emotional story in her own words….

Real Women. Real Stories: Sue’s story

By: Sue Van Duinen

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In March of 2013, when I was 57 years-old, I received a call at work from the medical facility that I had recently visited for my annual mammogram.  It went into my voice mail.  I was asked to give them a return call.  It was a busy day for me, and to be honest I forgot about the call until late in the afternoon.  Even when I finally did dial the number, it still didn’t really occur to me that there may be a problem.  I have had annual mammograms since age 40 and TO MY KNOWLEDGE, there was never an issue.  I had always received that little yellow card in the mail shortly after it had taken place indicating it was a normal mammogram and I tossed it into the pile of papers that were to be shredded.  I also preformed self-breast exams, though not as regularly as I should have; and never had reason for concern.

Related Content: How to do a self-breast exam

When I finally returned the call that day, I was told the radiologist had seen a change in my right breast, a thickening or fold if I remember correctly, and they wanted to take a closer look via an ultrasound.  My heart sank and I felt panic set in.  I told her I wanted to schedule it as soon as possible. Then I called my gynecologist’s office and asked if I should have my husband accompany me. I was and was told at this point it was a pretty routine procedure and not to worry. I also took comfort in the fact I wasn’t able to feel a lump, nor was my physician’s office during a recent visit.

My heart sank and I felt panic set in…

When I arrived at the medical facility for the ultrasound, I was pretty confident all would be fine. After all, I had already beaten the odds once; having survived a car accident and critical head injury at age 15, without any long-term brain damage; which was against the medical predictions. I also went on to have three children, something else they said would never happen.

During the ultrasound I lost all confidence.  I was told by the doctor performing the procedure that he was 90 percent sure that the thickening, fold, or whatever they had detected was cancer and I needed to undergo a biopsy.  The next hour was tortuous for me.  I was placed behind a thin curtain, by myself, and was subject to the conversations of all the other patients, and their support persons who were seated nearby; including the husband of one woman who was loudly carrying on his office business on the phone while his wife was undergoing some type of procedure. I called my husband and my mother to inform then, but I couldn’t even hear them or the support they attempted to give. Still alone, I went back for a biopsy of the two masses they had found in my right breast. My husband arrived shortly thereafter.

The physician that preformed the biopsies tried to be reassuring, and indicated that the second mass was probably the smallest mass she had ever completed a biopsy on.  In fact, and I quote, she stated, in reference to finding my cancer early, “This is Victory,”  I held onto that and when I told my sister about it, she framed the words “This is Victory” in a pretty blue and white ceramic frame for my reassurance.  (This was the same sister that had made a banner assuring “You will be fine” and hung it over my bed when I was recovering from my car accident.)

Sue Van Duinen during her cancer journey
Sue Van Duinen during her cancer journey

Another one of my sisters had seen a woman, Teresa Hendricks-Pitsch speak about her own breast cancer experience on television. I called Teresa that same day at her law office, and was surprised when she herself answered the phone.  She was honest and sincere about her experiences, and I could sense her dedication to helping women, especially women with dense breasts, achieve a stronger voice in their own cancer screening and if necessary, treatment.  This was really my first exposure to the issue of breast density. I didn’t know mine.

Five days later I received a call informing me I had stage one invasive ductal carcinoma.  I was quickly scheduled to meet with a “team” of medical personnel which included a surgeon, radiologists, and oncologist.  A social worker was also present.  I was also scheduled for an MRI.  No one said anything breast density.  After meeting with them, and at my family’s urging, I arranged for a second opinion, and in the process requested that my medical records be sent to a second medical facility. I also requested a copy for a radiologist associated with John Hopkins University who agreed to review then, so I was able to review them.

The oldest mammogram results that were included in my records were from 2008 and under the.  FINDINGS section it was noted “The breast tissue is heterogeneously dense.  This may lower the sensitivity of mammography.”  It was then recommended that I have a routine screening in 1 year.  In 2009, the records from my mammogram noted that “moderately heterogeneous breast density is again seen…” and once again an annual screening mammogram was recommended.

In 2010, the records from my mammogram noted that “the breast tissue is heterogeneously dense” and that “this may lower the sensitivity of mammography.”  The same findings and the same seemingly cautionary statements were included in the records of my 2011 and 2012 mammograms.  Yet this was never, ever conveyed to me.  I was shocked!

Within a week, I met with a second “team” at a second medical facility. I received a diagnosis of stage one triple negative invasive carcinoma. And though my cancer was found early, my triple negative cancer diagnosis would require that I undergo six rounds of chemotherapy. (Triple Negative Breast Cancer is different than other breast cancers in that it is not fueled by the hormones estrogen or progesterone, or by the HER2 protein.  Therefore, Triple Negative Breast Cancer tumors do not respond to targeted agents that are designed to block estrogen and HER2.)

My family’s medical history was also reviewed, as was the need for gene testing.  After a quick review of my family history by the offices geneticist, it was determined the gene testing was not necessary; which meant there would be no delay in my surgery. A lumpectomy appeared to be the recommended course of action; though it was made it clear I had the final say.  Even so, when I first opted to have both breasts removed, the reaction was that of surprise.  In the end, I opted to have only my right breast removed; and the sooner the better.

I wanted the monster cancer out of me.  I couldn’t stand the thought of something growing inside of me.

The surgery took place on March 25, 2013, and as it turned out, if I would have had the seemingly recommended lumpectomy, I would have had to have a second surgery to remove my entire breast as the edges of tumors were not well-defined.  I also had an expander placed in preparation for my breast reconstruction.

In April of 2013, at my family’s urging, I decided to undergo the gene testing that was previously determined unnecessary. If I had the BRACCA gene, I would opt to have the other breast removed. With the help of my sisters, I filled out extensive paperwork with regard to my family’s medical history prior to meeting with the geneticist at my surgeon’s office.

As I stated, I completed all my paperwork, and then double-checked to make sure the geneticist had received it and that she had all she needed prior to our appointment. She assured me that she did.  She began the appointment by showing me reasons why I would seek this additional testing.  I noted that a triple negative diagnosis was one of the indicators and quite shockingly, she had no idea that this was my diagnosis!  In fact, she didn’t even have my medical records with her at the meeting. I had to show her my personal notes that indicated such.  This was the same person who prior to my surgery had determined there was no need for the genetic testing prior to my surgery! My confidence in my second physician’s office was shattered, and I questioned every decision I had made thus far.

I was determined to take a more active role in my medical care, but this proved to be a difficult task as I returned to work on a full time basis and the coordination of my care promised by the treating facility seemed like a distant reality.

On May 1st 2013, I had the first of six rounds of chemotherapy, and soon thereafter I began losing my hair. My daughter was getting married on May 18th so I had prepared for the occasion by having my head shaved and purchasing a wig prior to beginning the chemo regimen. The treatments continued throughout that summer.

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Sue Van Duinen getting fitted for her wig

 

My daughter was getting married on May 18th so I had prepared for the occasion by having my head shaved and purchasing a wig prior to beginning the chemo regimen.

At the end of treatment cancer patients receive a survivorship plan, and mine did not include an MRI.  Rather, I was scheduled for another routine mammogram. I reasoned that because they had “caught” my breast cancer at an early stage it wasn’t apparently my doctor didn’t think it was necessary.  But what if I had additional testing when it was first noted I had dense breasts in 2008, in 2009, in 2010; in 2011 or 2012?  I wondered (and still do) would I still have my breast?  What if she, like the geneticist didn’t have all my information? Now I’m a rather reserved individual, and I certainly didn’t want to be viewed as a poor patient (after all, it’s important to have a good relationship with your physician, and I didn’t want anyone in charge of my care “mad” at me) but I did know that I, personally, needed further evaluation in order to obtain peace of mind; something that so far had alluded me.

As it turned obtaining that MRI was not an easy task, and I’m not quite sure who or why there seemed to be such opposition to obtaining it, but after many additional calls to my surgeon’s office, additional contacts with my Oncologist, a letter to and a meeting with hospital personnel, I obtained that second MRI.  Per my Oncologist, it was crystal clean. Whew!

My relationship with Teresa Hendricks-Pitsch/association with Breast Density Matters and the resulting knowledge that an MRI is a more effective tool in diagnosing early stage breast cancer in women who have dense breasts has given me the confidence to be more involved in my treatment. It also has fueled the fight for the passage of the bill that requires each woman to be notified of their breast density so they can fight for their breast health.

I was, and continue to be dumfounded by the opposition to such; including that of the radiologist who performed my biopsy.  In her testimony against passage of the bill she indicated informing women of their breast density would cause them undue stress.  Really?  Having information about your breast density, important enough to be noted in our medical records, withheld from us?  Now that’s stressful.  Who do we trust?  Thankfully the bill that makes it mandatory that health care professionals inform a woman of her breast density is becoming law here in Michigan.

Now that’s VICTORY.

 

 

 

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