Virginia’s Story

Personal History of Mammography & Ultrasound in a Woman with Extremely Dense Breast Tissue

For about a decade Virginia used the same Breast Care location to receive mammograms in North Carolina.   She started her mammograms early in life because her mother had died of breast cancer at age 57.   At each visit, the mammogram department would carefully document her family history.   She had at least two diagnostic mammograms with ultrasound prior to 2017.

In February 2017, Virginia visited  the Breast Care Center with another order from her primary care physician for a diagnostic mammogram.  Lately, the side of her left breast had felt like it was full of small nodule-like and pebble-like spots that were sometimes tender.  Once again, the staff collected family history and current complaint information and completed the mammogram and an ultrasound.  The pea-size lump was acknowledged in the ultrasound report and otherwise she was told everything was normal; in other words,  “You do not have cancer.”

Virginia thought her breast was continuing to change.  She was not comfortable with the lumpy feel of the side of the left breast.  She returned to the Breast Care Center in March 2017 to the Breast Specialists’ office.  She had found the Breast Specialists advertised online at the same center and visited in person to see if she could make an appointment.  It turned out her insurance allowed direct access to the breast specialists who were surgeons.  Virginia was seen the same day; she listened to the specialist explain how her dense breast tissue would just feel this way.

Still not comfortable with the lumpiness in her breast — and the soreness she felt under her arms — she returned again to the breast center in April 2017.  She was given another ultrasound of her axilla, and another breast specialist (surgeon) palpated her breast and gave Virginia another detailed explanation of what dense breast tissue is like.  The doctor suggested Vitamin E and Primrose Oil to reduce pain.  Once again, Virginia was told that “everything is fine.”

Virginia’s husband agreed with her in July 2017 that the side of the left breast felt lumpy and she should go see a professional about it.  Once again, Virginia visited for the third time to the same Breast Specialist’s office next door to the breast imaging center with her mammogram and ultrasound history.  Once again, a new ultrasound was done and nodular tissue was acknowledged.  Once again, everything was swell, according to the specialist.

On December 20th, 2017, she raised her arm to put on deodorant.  A lump showed as a curved hard spot in Virginia’s breast when she looked in the mirror.  On the 22nd, she was seen a  fourth time in the breast specialist’s office;   a repeat diagnostic mammogram now showed cancer, and the ultrasound showed questionable areas.  On the 27th, a biopsy was done, and on the 29th, the same specialist’s office (where she had sought help three times already) called to inform Virginia that she had invasive breast cancer.  The same day, an MRI with contract was done showing a 4.5cm X 4.0cm X 1.5cm mass.

Virginia began to read her medical records.  How could this be?  Even the federally mandated letter with State of North Carolina mandated wording  said everything was probably okay.  There were no specific instructions about what to ask for from the doctor.  She had trusted the doctors and the system.

Limitations Mammograms and Ultrasounds

What Virginia learned when she read her mammogram reports from the previous years was that since her breast were so dense (categorized as Extremely Dense) that the sensitivity ability of the mammogram to see anything abnormal was reduced by 75%.  The ultrasounds had their own limitations, one of those being that ulgtrasounds cannot identify the same calcifications that the mammogram is trying to detect.  Only when a mass becomes someone significantly large is the ultrasound possibly a helpful tool.

Road to Treatment

The afternoon of December 29th, Virginia, her husband and a girlfriend listened to the Breast Specialist Surgeon describe her recommendation for cytotoxic chemotherapy over a 4 month period, recurring on an every 2 to 3 week basis.  The purpose that the Specialist stated would be to reduce the size of the tumor in order to make Virginia’s surgery easier (since the tumor was large and the breast and body habitus were very petite).  The recommendation was stunning for a stage II tumor based on MRI findings.  A total mastectomy was recommended with decisions about reconstruction to be taken into consideration later.  Virginia felt the surgeon’s recommendation was actually implying a Stage III diagnosis.  A double mastectomy was discussed in the meeting; however, this was not reflected in the physician’s progress note. An appointment was scheduled with a medical oncologist chosen by the Breast Specialist for January 5th, 2018 a Friday.

Over the New Years holiday weekend, friends and their contacts arranged for two other surgical consultations.  On January 2nd, Virginia visited a private surgeon — one not employed by a large institution.  The visit and staff were thorough.  The surgeon did his own ultrasound and stated it appeared there were multiple foci of cancer.  He attempted to arrange for Stage III and Stage IV screening.  His office staff collected genetic testing samples and sent them off.  Virginia and the surgeon agreed that a mastectomy made sense and that she could delay reconstruction if desired.

On Wednesday, January 3rd, 2018, Virginia, her husband and friend visited a third breast surgeon employed by a large academic medical center.  The surgeon was very efficient, cool and collected.  She was ready to take charge in a positive manner so Virginia scheduled her surgery with her for Tuesday, January 11th, 2018.  Within an hour she met with the head medical oncologist for the same location and he assured her that likely all she would ever need to do was have a mastectomy and take Tamoxifen, a drug that blocks the effects of Estrogen.  One of the good things was that the biopsy showedher cancer to be very strongly Estrogen receptor-positive.

On Friday, January 5th, Virginia, her husband and friend met with a plastic surgeon she had been referred to by the surgeon from the December 29th diagnosis consult.  During that consult, Virginia learned the private physician (2nd surgeon) used an out patient center and could not do a standard Sentinel Node Biopsy, which is an intra-operative procedure to determine if cancer from the breast has spread into the lymph system.  Strangely, the plastic surgeon’s staff were opposed to Virginia examining the notes provided by the referring physician when that were left laying in the exam room.  They told Virginia she could only see the records if requested it from the referring physician.

Virginia, at this point, thought everything was decided.  Then she started to compare the three surgeons’ recommendations more carefully.  She realized the first and diagnosing surgeon seemed not to be on the same page with the others.  After studying the private surgeons recommended plan and comparing it to the large academic medical center entity, it seemed they had little interest in making certain that there was no State III or Stage IV evidence.

Virginia was trained as a nurse and pharmacist.  She realized that if there was evidence of Stage III or IV cancer, she may be giving up an opportunity to get ahead of the cancer if she had surgery first and had to therefore delay cytotoxic chemotherapy due to the need for time to heal.

Change of Heart on the Road to Treatment

Virginia’s husband brought a copy of the private surgeons plan of care to her on Friday or Saturday.  This was when she realized that the academic medical center she had scheduled may be viewing her more like breast cancer revenue than as an individual.  For instance, the surgeon had barely examined her physically.  Second, the screening for Stage III / IV cancer was missing.

Virginia was about to cancel an appointment she had made over the holidays at Cancer Treatment Centers of America, Eastern Regional Medical Center, in Philadelphia.  However, now she thought she was seeing a diagnosing surgeon wanting to be too aggressive in therapy without doing further investigation, a private surgeon not completely enough explaining that he could not offer a sentinel node biopsy, and a major academic medical center offering surgery and treatment based on a biopsy and MRI with a “we let you know if we think anything different down the road” attitude.

On January 8th, 9th, and 10th of 2018 Virginia visited Cancer Treatment Center of America the first time.  She met with an internal medicine physician that evaluated her overall health, and a breast surgeon and plastic surgeon who recommended a skin-sparing (not nipple sparing) mastectomy direct to implant due to her small size.  A medical oncologist was introduced as the lead physician for her treatment and a radiation oncologist explained how she may benefit from radiation.  The physicians at Cancer Treatment Centers of America were thorough in terms of their hands-on physical exam.

A bone scan and CT scan were completed.  There was no evidence stage III/IV cancer.  The surgery was scheduled for January 15th and the January 11th surgery was cancelled.

Lasting Impressions

Medical services for breast cancer is big business. Likely, one-fourth of persons receiving radiation or chemotherapy are women with breast cancer.  It is important that you and your family take control of your treatment and care.

Links

https://www.breastcancer.org/

https://densebreast-info.org/

https://www.areyoudense.org/

https://www.areyoudenseadvocacy.org/

 

DISCLAIMER

This Web Site, its stories and other content are intended for educational purposes.  The information provided, gained or inferred is not intended to be used as individualized advice and is not a substitute for that advice.  Readers should seek professional advice based on individual circumstances from independent tax, legal, accounting, financial, medical, healthcare, and other professional advisors.