In April 2014. I was 35 years old and in my second trimester of pregnancy with my third child. At my age, mammograms are not recommended unless there are immediate family members with a history of breast cancer, which I did not have. After a long day at work seeing patients, I was exhausted and ready for bed when during my nighttime routine of putting lotion on; I felt a lump which I had never felt it before. I saw my OB the following day, which thought it, was most likely a milk duct cyst, as I was pregnant and too young to have anything to worry about. She did recommend a breast ultrasound and drainage of the cyst. The next day I was at radiology waiting for the ultrasound when the technician went completely silent as she put the ultrasound wand on my breast. Then the doctor walked in and said that I did not have a cyst; I had a solid lump. I asked to have my husband brought in from the waiting room, and then she showed us the suspicious looking image. They shielded my pregnant belly and immediately did a mammogram followed by a biopsy. It was a Friday afternoon and results generally would not be back until Monday, but the radiologist promised me that she would have the pathologist come in on the weekend to look over the report and that she would call me with the final result. “If you were my sister, I would have you schedule an appointment with the surgeon right now. You can always cancel it, but better to get the appointment ASAP” is what she told me. My husband was on the phone immediately, trying to schedule an appointment.
What were your main concerns after being diagnosed?
I was terrified. What was going to happen to my baby, my pregnancy and my older girls who were only 5 and 7 years old?
How did your family react to the news?
My husband and I knew even before the pathology results came that what we saw on the ultrasound screen was not something benign. I called my sisters and my parents as soon as I got home from the biopsy to tell them that the radiologist was suspicious that it was going to be something bad. My youngest sister immediately flew in to be with me. I had bought tickets for my kids to watch a play that morning, so my sister, close friend and I took them there. My phone rang before the play started. “Itâ€™s what I was afraid of. Its invasive ductal carcinoma,”said the radiologist. Everything changed right there and then. I had to tell my husband in person, so I drove home, leaving the kids with my sister and friend so that they could enjoy the play. We cried and sat there in shock, unsure of what to do and what to think. I messaged my older sister in Pakistan so she could tell my mother. However, the most difficult thing was telling my kids. I wrote about that experience in detail on my Caring Bridge journal: www.caringbridge.org/visit/sarahnadeem/journal.
How did you cope emotionally?
When you are diagnosed, you feel like the world just stopped and pushed you off the ride. I couldn’t sleep for a week, wondering what would happen to me, my unborn child, my children, my husband and my family. I sat wondering if I had a future and what that future would look like. Being a physician, knowing and having seen patients undergo the treatments, I knew what all the complications could be and that terrified me. There are no “highs” when you have cancer there are just the everyday things you realize are so precious. As I saw the surgeon and oncologist, I had acancer nurse navigator, who was a huge support for me. I felt like a deer in headlights, but she provided all the info, resources and guidance I needed. I spent tons of time online, reading breastcancer support forums and going through websites about younger breast cancer patients. I had access to the services at the cancer support network at Northwestern University Hospital and a non for profit Wellness House, which provides free support services for cancer patients and their families. They had therapists and support groups to help me, my kids and my husband. The biggest support was my mother, who flew across the world and stayed with me to help manage everything. Without her, I don’t think I could have coped.
What treatment method(s) did you go for? How did your lifestyle change? Did you continue working whilst undergoing treatment?
I saw three surgeons, and along with my oncologist, I was advised that chemotherapy was needed first. I was bewildered. How could chemo be safe in pregnancy? Then they showed me data and I did my own research, and they were indeed correct. It could be done. I had three cycles of chemotherapy, six weeks apart, then delivered my healthy baby girl, followed by anther chemo cycle. Then, I had a bilateral mastectomy, another type of chemotherapy weekly for twelve weeks, finally followed by a weekly infusion of targeted therapy for one year. I just completed active treatment two weeks ago – a year and a half after my diagnosis. cancer is a disease which envelopes you. You canâ€™t just “go” and get treatments done. Your whole life revolves around doctors appointments, tests, infusions and complications. Nothing is “normal” anymore. cancer becomes your lifestyle. As I started chemo, I took off work because you are more susceptible to infection, and as a doctor, I couldn’t take that risk. Besides that, there was overwhelming fatigue; a sense of tiredness that can not be described fully in words. It felt like all my energy was sucked out from me. I spent hours and days in bed, too exhausted to get up and even get myself a glass of water. With chemo, came steroids as well, which would make me irritable, angry (besides the anger I felt at my diagnosis) and disturbed my sleep.
Did you lose your hair?
Yes, I lost my hair, twice. The first time was about two weeks after my first chemo round. The second time, I only had some fuzz return on my scalp as I didn’t get chemo for about 4-6 weeks around my mastectomy, but that also fell off with my second set of chemo. Losing my hair was beyond traumatic. I know “itâ€™s just hair” but it is so much a part of our identity, what we look like, and who that person is who stares back you in the mirror. I knew that it would happen, so I had cut my hair in a pixie cut before starting chemo as recommended by other people who had been through this before me, all to make the loss of hair easier to deal with. But, nothing prepares you for waking up with tufts of hair on your pillow and in the bathroom. And I lost it when in my shower, clumps of hair just started falling off. It was then, that I asked my husband to shave my head. He did the best he could, but I did see a wig and hair stylist who helped shave my head completely. Your scalp feels very tender, just like if you have a very tight ponytail, right before and a few weeks after the hair starts falling off. I wore a wig, scarves and hats for close to a year. My kids always wanted me to have my wig on when I dropped or picked them from school, although I had already told their teachers and principal what I was going through so they could help my children if they noticed they were worried and acting out in school. What you don’t hear about as often is that besides losing hair over your head, you pretty much lose all your body hair. Without your nasal hair, which you would never think has much of a purpose, your nose drips all the time. Once your eyelashes are gone, your eyes feel really dry. Your eyebrows disappear, so you look and feel like an alien. The arms and legs hair loss, I can’t complain too much about, so maybe thatâ€™s the only good hair loss!
What advice or message would you like to share with people about cancer? What advice would you give to women who are, or will be going through the same thing you went through?
Everyone has their own unique path and experience. “Advice” is too trite a word. Every woman with breast cancer or another type of cancer follows a different road; it is a very personal journey. Everyone should be allowed to deal with it as they want to, as there is no right or wrong way to deal with cancer. The most important thing I think is knowing that there are others like you, which can be a source of great strength and support.
Do you feel it’s a taboo subject in Pakistan? Why is that so? What more can be done to change that?
In Pakistan, we sometimes try to hide illnesses. I don’t know if itâ€™s because it is the “breast” that we don’t want to talk about it. I believe that it is about time we change this mindset. I have been very open about my diagnosis and am hoping that more women will share their experience. When you are diagnosed, you feel so alone, so being able to have the experiences of different people shared, gives you a sense of community.
What are you doing towards raising awareness about breast cancer?
The population of Pakistan has been reported to have the highest rate of breast cancer of any Asian population (excluding Jews in Israel) and one of the highest rates of ovarian cancer worldwide. We need to know and understand this risk. Also, there are studies that show that a significant percent of the population carries the high risk BRCA mutations, which increase the risk of breast, ovarian, prostate, pancreatic and peritoneal cancers in the carrier. I am working on a website to collect resources for breast cancer patients in Pakistan: www.breastcancerpk.org.
How long have you been cancer free?
I finished active treatment just three weeks ago. I’m not sure what “cancer free” even means to a person who has had cancer. That’s one of my pet peeves; I will always carry the burden of cancerwith me. I do not have any detectable disease at this time, but there is no way of knowing if there are or aren’t microscopic cancer cells still within me. At this time, I choose to focus on the fact that with the pills I continue to take, the cancer will not return in a form where I need more chemo, surgery or infusions. That is how I approach the future.
Hollywood actress Angelina Jolie revealed that she had undergone a prophylactic double mastectomy on finding out that carried the defective gene â€“ even though she did not have cancerat the time. What do you think of her decision?
Angelina Jolie underwent a bilateral mastectomy a few years ago, and earlier this year wrote about her prophylactic oophorectomy (removal of ovaries). I agree a 100% with her. I was seen by a geneticist too as I was young enough (under 40) to have breast cancer. I did not have a strong family history, but I was tested for the common gene mutations which have been identified to increase the risk of breast and ovarian cancer. I am positive for the BRCA2 mutation. What that means is that I had a very high risk of getting breast cancer and ovarian cancer. That also meant all my family needed to be screened for that mutation too. If one has the BRCA1 mutation (which Angelina Jolie has) or the BRCA2 (mine) you have a higher risk of these cancers than the general population. Knowing your risk is very important, which means more frequent screening, starting at an early age, and also preventive mastectomy and oophorectomy. I did undergo a preventive oophorectomy, because there are no good screening tests for ovarian cancer, and ovarian cancer is often a terminal disease. I would recommend to anyone who has a family history of cancer to please consider testing for these genetic mutations. Having been through cancer treatments, I would recommend prophylactic mastectomy and oophorectomy versus having to go through chemo and cancertreatments. People may think that this mutation is not common in Pakistan or the surrounding regions, but here is an excellent resource to assess your risk:Â http://www.cdc.gov/cancer/breast/ young_women/knowbrca.htm
Looking back, would you do anything different?
You do what you have to do. I wish I was never diagnosed with cancer, but that is something I cannot change :).
What are some common misconceptions about breast cancer?
The many circulating Facebook posts about “foods to fight cancer, food that will cure cancer!” are quite misleading and do not help the cause or patients. Yes, one should eat a healthy diet but really, one needs to trust medicine and your doctor. g