2 years since diagnosis
Age at interview: 37
Annie (37 years old) lives on her own. She works as a citizen services officer and is currently on sick leave.
Annie received her diagnosis in 2013. Annie’s symptoms started earlier that year when she noticed that her breast increased in size and then later on it became very painful, red and warm. When she also felt a swollen lymph she started to really wonder what was happening and she decided to go to a walk-in clinic. The doctor told her that it might be an infection but that he suspected that it might be a very rare form of breast cancer as well; inflammatory breast cancer. Annie saw a cancer specialist? in a private clinic on a Monday, three days after seeing the doctor. Over the weekend she had checked the Internet about this form of cancer and she felt very worried as she mostly found these three words: fast, aggressive and deadly. It then took a long month to find out if the cancer has metastasized or not following her biopsy. Fortunately it was not metastatic but stage 3 cancer. Annie then underwent chemotherapy, a double mastectomy and just finished radiotherapy. The surgery was the hardest phase for Annie. She didn’t feel she received the information she needed, such as what kind of care she needed after surgery. Having inflammatory breast cancer at such a young age worries Annie and at the same time she has found that many people don’t know much about her condition and do not understand well what she is going through. Annie therefore became an advocate and distributes information folders about inflammatory breast cancer to help increase the public knowledge. She would like to see that more attention is given to this condition so that women are more aware of the different kind of symptoms women have when they have inflammatory breast cancer. During the treatment, Annie had good support from her parents with whom she stayed while she had her chemotherapy and mastectomy.
- Reconstruction surgery – AnnieAnnie had a lot of skin removed due to her inflammatory breast cancer; she was advised to wait 2 years before thinking about reconstruction.
- Surgery – AnnieAnnie describes how she felt immediately after having a double mastectomy.
- Relating to health care professionals – AnnieAnnie expected to have to fight to be able to switch healthcare professionals but it was an easy process.
- Testing and diagnosis – AnnieWhen Annie heard she needed a follow-up she underwent most testing within a day in a private clinic.
- First symptoms – AnnieAnnie, diagnosed with a rare form of inflammatory breast cancer, noticed that her breast was red, hot, painful, and swollen.
- Work and finances – AnnieThe support from colleagues does not always happen as we would like, explains Annie.
- Recurrent and metastatic (advanced) breast cancer – AnnieIt was difficult for Annie to wait for several weeks for the test results.
- Follow-up care and the risk of recurrence – AnnieAnnie had support through a Facebook group involving women in a similar situation.