All the things I wasn’t told about my treatment

Yara Sallam

I had a benign tumor removed 15 years ago, and ever since then, I would go for a checkup every year to make sure that everything was still fine. I read about breast cancer, enough to keep me going for the regular checkups – something that many women fear and many more cannot afford or don’t have the information on where to do them free of charge. When my father was diagnosed with lung cancer, I heard an inner voice telling me that I was next. Three months later my regular checkup looked well, but fast foward three more months after that and a malignant tumor was fully formed. My breast cancer was caught at an early stage and the treatment plan was very straightforward: surgery, followed by chemotherapy then radiotherapy and hormonal treatment. The oncologist advised to remove both breasts as a precautionary measure. I initially agreed to do it. I was so scared, and the lump in my breast reminded me of my long-time fear of breast cancer. But the surgeon had a different opinion, he said the removal was not necessary given the fact that there was no history of breast cancer in my mother’s side of the family. I went into the surgery room with three potential scenarios; two of them included a reconstruction of my breast in case the tumor could not be removed alone.  When I woke up after the procedure, I found out that I had a breast-conserving surgery. 

I recall having confused thoughts and feelings about my surgery. No one asked me if I wanted to undergo  breast reconstruction. They all presumed I would, but I felt I needed time to think about whether I preferred having a flat chest or not. I felt that I should have been given the space and time to think about it and process it. This presumption about me wanting the reconstruction came as no surprise, for a woman who grew up around jokes on small breasts, how unwomanly they are, and how unattractive they are to men. The idea that a woman in her thirties would choose to have a flat chest is not a conceivable idea. I actually don’t know what I would have preferred, but I would have appreciated being given the time and space to discuss the options. 

You would think that if a treatment may affect the functionality of your ovaries, or disrupt important bodily cycles, doctors would share this information with their patients… not in my experience.

My period skipped a cycle while I was undergoing the chemotherapy treatment. You would think that if a treatment may affect the functionality of your ovaries, or disrupt important bodily cycles, doctors would share this information with their patients… not in my experience.

The oncologist asked me at the beginning of the process if I was married and whether I had children. But he did not ask anything about my future reproductive plans or whether I was sexually active. He also omitted many things about the side effects stemming from my cancer treatment. I was told it is the “doctors’ culture” in Egypt not to talk about ‘potential’ side effects, but I felt in the dark when it came to my sexual and reproductive health.

When I had the appointment to talk about radiotherapy and hormonal treatment, the oncologist said that the latter would consist of an injection every three months for two years, and a pill-medication once per day for five to ten years. The doctor strongly advised me not to stop the treatment to get pregnant. He explained that since my cancer was hormone receptor-positive, I would be risking getting it again if I did. However, he said maybe in two years we could think about it, in case that a pregnancy was important for me. He mentioned hot flashes as a side effect of the treatment, saying they would fade with time.

I knew I would not get a proper explanation of the side effects, so I booked an appointment with the gynecologist to have a conversation. It was scary and I was angry.

I was scared about what the hormonal treatment entailed, and I knew I would not get a proper explanation of the side effects, so I booked an appointment with the gynecologist to have a conversation. It was scary and I was angry. The treatment had an impact on every aspect of my sexual and reproductive health and the only thing that was mentioned were the hot flashes! Nothing about the decrease in libido, the vaginal dryness, the difficulty in orgasming, and not even the possibility of experiencing a flare in anxiety and depression. I was told later by the gynocologist that I will experience a treatment-induced menopause. I felt that once they framed reproduction as out of the question, sexuality did not matter. After consulting with another oncologist, I decided not to take the injection, but I was told that the pills were essential. Four months into hormonal treatment and I can understand why some women choose not to take it. It is affecting my bones, my sexual health and definitely my overall mood. I was told that the symptoms would fade with time, and they did, but I bled and they came back. I long for the day I will be able to stop hormonal treatment or when I am able to accept how things are with love and compassion.


About the Author

Yara Sallam is an Egyptian feminist and a legal researcher based in Cairo. Yara has worked at various organizations, including the Egyptian Initiative for Personal Rights (EIPR), Nazra for Feminist Studies, and the African Commission on Human and Peoples’ Rights (ACHPR). She has worked on diverse issues, including criminal justice, regional and international human rights mechanisms, transitional justice, freedom of religion and belief, and women human rights defenders.

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