These blog posts will be a humble attempt on my part to tell my story in order to help other women feel like they are not alone in the terrifying experience that is cancer. I was diagnosed with bilateral invasive ductal carcinoma (IDC) in May of 2021. Every step of the way, from discovery of the lump to testing to diagnosis to treatment, was uniquely challenging and eye-opening. Thank you for following along with my journey. Part 1 is available to read here.
“…Scientifically, cancer still remained a black box, a mysterious entity that was best cut away en bloc rather than treated by some deeper medical insight. To cure cancer (if it could be cured at all), doctors only had two strategies: excising the tumor surgically or incinerating it with radiation-a choice between the hot ray and the cold knife.”
- The Emperor of All Maladies by Siddhartha Mukherjee
The next huge step after receiving the initial diagnosis was to choose a treatment facility, get a referral placed by my doctor, get both cancers staged, and then start treatment. My uncle is a physician in Houston and a prostate cancer survivor who had been treated at MD Anderson (MDA) in 2018. He immediately came to my house with his family to give me physical and emotional support, while Raza returned to work, and my mother-in-law and sister-in-law cared for our 3 children. My mind started spinning, as different physicians in our family and social circle, started offering different points of view and advice on how to proceed and what to expect. Despite being a healthcare provider myself, I realized how little I knew about cancer, the variety of diagnoses, and the variety of treatment options.
The time between knowing I had cancer and getting an appointment took approximately 2 weeks, but it felt like an eternity. Knowing it was still present and growing was simultaneously a mental torture chamber, as well as an opportunity to pray for the best outcome and lowest possible staging in the interim. My OBGYN who had requested the tests was the official referring physician to MDA, but I do believe it helped that my uncle contacted several of his physician colleagues and other contacts, as well as my husband consulted one of his physician customers who works at MDA. He also put in a good word for me to expedite the process.
My uncle and I sat down for a phone conference the day of the diagnosis with an oncologist who was my other uncle’s retired classmate from India. He told me that for every 1 cm of cancer, there is an approximate 10% probability of spread. Unfortunately, on my left side the pathological report was showing between a 6-9 cm mass of cancerous tumors, so that put me at a 60-90% rate, possibly. My heart dropped at that moment, and I began to mentally prepare for a stage III or IV diagnosis if that was indeed the case. I still recall that was one of the most frequent prayers everyone I knew kept repeating they were doing-that it was still localized and that statistic would not be the case for me. My parents left their home and drove 250 miles to stay with us indefinitely until we knew a more definitive diagnosis and had a plan of action. I was trying to figure out at this point how to communicate to my children and reached out to the Pharmacist Moms Group that I am in on Facebook. I received hundreds of responses from other pharmacist mothers who had either experienced cancer themselves, had a spouse who had cancer, or had a parent who had cancer when they were young, or simply said they were praying for me and my family. That was my first experience with a “support group;” gaining the empathy of so many other mothers gave me some of the courage I needed during that time that they, too, had battled hard times and a lot of times triumphed in the end. I followed through with several of their recommendations on books to purchase for my girls, including “Cancer Hates Kisses.” My children were dividing time between our house and staying with my sister-in-law’s family and my parents-in-law while I was sorting through the diagnosis, my emotions, and a lot of phone calls trying to get seen as soon as possible.
I finally got a call from MD Anderson and the nurse navigator told me to secure the pathology reports and CDs from the radiology facility where the testing was conducted, but that they would do their own tests as well and compare results. Covid was still ravaging the country, so the first test they had done was a Covid test. This was followed two days later by a repeat set of mammograms; the radiologist explained she also wanted to do an MRI because there were several tumors detected on both sets of mammograms, both sides were showing cancer, and she needed to assess if it had spread to the chest wall, surrounding tissues, and lymph nodes, which would be best identified again using contrast. They also did a chest x-ray to ensure no tumors were detectable anywhere in the chest cavity. The MRI showed no chest wall involvement but possible lymph node involvement, so a repeat ultrasound was done the next day. I recall the urgency with which they ordered the tests, the amount of time we spent driving to more than one facility to get them done, and how frightening it felt to sit there and wait for the results. I am normally a positive person, but now that I had been diagnosed with a disease I genuinely was hoping I did not have, it made it seem like anything terrible was possible and even plausible.
One day later, after getting labs drawn, I made my way to the “big appointment” which was a multidisciplinary 4 hour appointment with a breast surgeon, oncologist, and radiation oncologist. Because of Covid they were not allowing anyone to accompany me to the visit, so I had my phone ready to Facetime my husband once the doctors arrived. I felt half relieved and half horrified that I was finally going to get an idea of what needed to be done. All 3 doctors, as well as one of their residents, entered the room. They introduced themselves individually and collectively; they explained that each physician had a different role to play in the treatment course. After conducting a physical exam, they reviewed the results from all the tests that had been conducted. Then I had a separate session with each physician, in which she explained what her role would be, beginning with the surgeon. The right side cancer appeared to be stage 1 and the left side appeared to be stage 2 at that time. Both sides were the same hormone-positive (estrogen and progesterone) cancers and HER2 negative. The two options I was given by the surgeon were a right-side lumpectomy + radiation combination or a mastectomy (she said they had equal outcomes) and a left-side mastectomy + radiation. She explained the left side amount of cancer was so vast there was no option but to do a mastectomy, but I had a choice with the right side. Neither one sounded like a very good choice, and I fought back tears as she taught me about anatomy and outcomes.
Next, the oncologist came in. Her session was relatively short because from what I was told, I did not necessarily need chemotherapy. The cancer had not spread to the lymph nodes, so since the first line of action was to operate and remove the cancer while it was still local, they were going to hold off on chemotherapy until they had done more pathological testing on the cancer. They would get back a score, called an oncotype, that would indicate whether chemotherapy would provide more benefit than risk. After radiation was complete, I would see the oncologist every 3 months initially and be placed on a hormone-blocking medication for the next 5-10 years.
Finally, the radiation oncologist conducted her individual visit. She reviewed that I was going to need radiation for sure on the left side, again due to size and stage, but that the right side would depend on whether I opted for the lumpectomy and radiation combination vs the mastectomy. Radiation would start after I had adequately healed from surgery. She mentioned how a lot of women have difficulty with arm movement post-surgery and that I would need to be able to raise my arm above my head since all the lymph nodes under the arm are targeted during radiation. I tried to absorb as much as I could of what she was telling me, but my mind was fried at this point and kept going back to the surgical options that I had been given just a little while ago.
As the visits wrapped up, I slowly got dressed and trudged down the escalator to our car, where my husband was waiting. I felt like I had been given a lot of information that didn’t make complete sense at that moment. Why wasn’t chemotherapy on the table as an option so I could avoid being cut and burned?
When I got home, I told my parents the results of the visits. I remember my mother looking upward and thanking God, and I questioned why she looked relieved. She said she had been praying the cancer was localized and it would be removable. I told her I wasn’t as happy at the thought of the surgery, and she said she understood, but as a mother she wanted me to live. And as a mother, I understood her sentiments, but I still went to my daughter’s room, shut the door, curled up in bed, and had a long cry.
I appreciate the honesty and rawness in you sharing the details of your story. May God always protect you and your family
May Allah protect you and give you strength. Loves from Turkiye
Thank you for sharing and I pray that God continue to strengthen you on this journey He has chosen for you. God chooses His best warriors for the bigger battles !! Love and hugs … Pharma mama …
What a story! I can relate to your story in so many ways! SubhanAllah I am in pharmacist mom Facebook group found this today. August 2 I will never forget my journey to breast cancer begin. Still in treatment a long one but I learned that Allah SWA does not give us anything that we cannot handle. I pray that you are doing well thank you for sharing your story
I’m sure this was so difficult to write, Aeliya, but you’re so strong to do so! iA you’ve brought light to the subject and have saved other women by doing so xoxo
You’re the bravest of all in our family to pen down your personal experience! Trust me, I have been writing my personal diaries since childhood but didn’t have the courage to share it with anybody. May Allah SAWT and Ahlebaith AS continue to bless you and your loving family with patience and happiness. 😘🤲
You are so brave to share your journey with such openness and honesty. I pray for your health always.
I know this post was really difficult for you to write. You have moved mountains in the last 14 months & iA Allah will reward you for your patience and steadfastness. ❤️🩹
No words for all you have gone through. So proud of you with all my love and duas always IA
You’re such a strong one! May God make this easy for you and give you strength!
Thank you for sharing your experience. I couldn’t read it without breaking down. May Allah protect you always and protect your resilience and strength.Ameen Love and hugs
You’re literally the strongest person I know! Thank you for sharing your journey! I know you’re helping so many people.
I have no words, sending hugs