Age at interview: 56
Laurie works as a professor of computer science at a university. She is married and has one grown child.
Laurie received her diagnosis in 2014. Her physician had noticed something unusual, not a lump, in her breast during an annual exam. She referred Laurie for an ultrasound. It turned out that Laurie first needed to do a mammogram which was then followed with further testing (the ultrasound and biopsy). Laurie was told that she had breast cancer and a treatment plan was proposed which included breast conserving surgery, chemotherapy, radiation and hormone therapy. From this point onwards, Laurie adopted a rather unique approach to her care – which she refers to as a ‘patient researcher’. She worked hard to develop a full understanding of her diagnosis and used this knowledge to discuss her treatment plan with the medical team, proposing changes according to research evidence and her personal preferences. The first decision she had to make was whether or not she wanted breast conserving surgery. She searched the scientific literature regarding options and came across an innovative technique called a ‘Goldilocks mastectomy’. With this approach, healthy remaining skin flaps are used to create smaller breasts during a single surgery (in her blog you can find more information about this procedure: http://flatchestedwarriors.weebly.com/). Laurie prepared a power point presentation for her next appointment with the surgeon. She successfully convinced him to follow this procedure for the first time in his life! Then, Laurie and her oncologist decided that she would not undergo chemotherapy. This decision was also made based on the scientific information she had gathered. She also questioned the radiation plan and continued to gather scientific proof to optimize her treatment which she sent by e-mail to the radiation oncologist before her next appointment. He sent her back some more information and reserved more time for her appointment so that they could go over all of the information. Again, she went with a power point presentation to this appointment – one that she had found on the internet from another researcher. Together they decided to compromise and radiate only the upper part of her chest, a smaller area than originally suggested, and they also agreed to reduce the period of radiation from five weeks to three weeks but with a longer radiation time. These were not the only things that Laurie challenged and successfully adapted or changed over the course of her treatment: she questioned things such as why she wasn’t supposed to swim during radiation (she brought the team new markers), why you can’t receive an image of the radiated parts of your body (she requested and received them), why you need to wear a hospital gown for a mammogram (she was able to keep a ‘t shirt on instead ) and why it is so difficult to get copies of your own test results. Laurie thinks it is really important that patients are included as partners in treatment decisions. She is convinced that patients from all kinds of different backgrounds, possibly with the help of a navigation nurse, can learn and participate more in treatment decisions together with the health care team.
- Challenging Experiences – Laurie
- Challenging Experiences – Laurie (2)Learning terminology can be difficult for patient partners, and even some researchers, when you are not familiar with a specific area of research, says Laurie
- Endocrine (hormone) therapy – LaurieLaurie wonders why some women stop taking hormones.
- Radiation therapy – Laurie (2)After her Goldilocks mastectomy, Laurie researched her options and discussed them with the radio-oncologist.
- Radiation therapy – LaurieLaurie was determined to keep swimming and came up with a novel approach.
- Chemotherapy – LaurieLaurie requested more testing, did her own research, and then presented her recommendation to her doctor.
- Reconstruction surgery – Laurie (2)Laurie wondered if there were other options than a mastectomy.
- Reconstruction surgery – LaurieA Goldilocks mastectomy was exactly what Laurie wanted.
- Managing within the health care system – Laurie (2)To collect more information about her illness status Laurie requested an oncotype test even though she was not entitled to this test.
- Managing within the health care system – LaurieLaurie thinks that people can be better informed about their own illness.