Diana C. Awuor’s diagnosis of stage 2 breast cancer in November 2020 shocked her to the core. The wife and mother of three; ages 6, 1, and 5 months, at diagnosis, never expected this but she has now reached a point of acceptance and is ready to share her story in a bid to help others.
Below are her thoughts on how the diagnosis has changed her life, her family, relationships and her career.
1. Can you share how your diagnosis came about?
Three weeks after my youngest child was born, in May 2020, I felt strange on my left breast though there was no lump felt. My husband and friends, just like my OB-GYN, downplayed my concerns when I shared what I felt.
Two weeks later, in mid June, when pumping milk, I felt like something gave way and lots of milk came out from my left breast which never produced a lot of milk.
In the next few days, I felt a tiny lump which later disappeared and resurfaced, prompting my second visit to my OB-GYN. Upon missing him, his nurse practitioner also sent me away alleging that nursing moms have a lot of such lumps due to milk ducts.
The following weeks were uncomfortable, prompting my visit to my primary care doctor who then sent me for a mammogram. Results showed lumps on both my left and right breasts, which the radiologist said were fibroadenoma since they had no features found in cancer tumors. However, the report [also] indicated suspected malignancy on the left side lump.
My primary care doctor referred me to a breast surgeon for excision biopsy. [The surgeon] told me that it was not cancer and that I should continue nursing my baby until she was four months old.
Despite my fears, I chose to trust the surgeon, though the tumor was twice as big in a month. Upon my review, he said he was not sure if the tumor was a galactocele because cancers don’t grow that fast. These are milk-filled cysts.
My kids’ pediatrician then advised me to seek a second opinion, which I did.
I found an oncology surgeon who accepted to see me quick. She told me no doctor should tell a patient that a growing lump isn’t cancer and that a biopsy should be the only way to determine [whether it is or not]. She asked me to insist on getting a biopsy referral from the surgeon which turned to be an uphill task.
The surgeon eventually granted my wish leading for a biopsy on the 28th of October 2020. On November 2nd, it was confirmed this had been cancer all along.
2. What is your family history with cancer?
Apart from my maternal grandfather who passed on from prostate cancer in his mid 90s, there’s no history of cancer in my family lineage. A genetic test done on me came back negative, meaning cancer is not in our genes. This was just that, stray.
3. What has been your course of treatment, including surgeries?
I had a double mastectomy by choice though the surgeon preferred the treatment for my left breast for clearer margins because I did not have chemotherapy at the beginning to shrink the tumor.
After the mastectomy, I had five months of intense chemotherapy because the cancer was aggressive as determined by the oncotype test done on me.
I am scheduled for a second surgery, total hysterectomy, which I opted for to help reduce the amount of estrogen in my body because the cancer was feeding a great deal from estrogen.
With the ovaries being the top producers of this hormone, I am having them all taken out. I know it will get me into early menopause at 36 years old but at this time, I just want to do everything possible to be here longer to see my kids grow.
This surgery will also eventually help reduce the amount of medication given to me like injections every three months.After the surgery, I will begin radiation.
4. What side effects have you experienced from the medication?
I lost all hair on my body. I had to shave all hair from my head the morning of my first chemotherapy infusion, January 8th, 2021. All my nails have turned black.
You see, chemotherapy targets fast growing cells. Cancer is fast growing just as nails and hair cells. Additionally, “chemo brain” affected me too. I have a slight problem with my memory and forget some names in addition to putting some things in the wrong places and such like.
I have lost weight too but this is mostly because of the workouts I have been doing during treatment to help me maintain a healthy weight and for sanity.
5. How has this affected your family: spouse, children, parents, siblings?
Our life has changed. It has been a roller coaster of feelings. But, being a religious and very spiritual family, God has already pulled us out of a dark place.
This diagnosis affected us more as immigrants with most of my close family members being in Kenya and I in the U.S.
Then, there was COVID-19 and my oldest was homeschooling. This has put us between a rock and a hard place.
My husband [Kennedy Osara], who works with the U.S. Army, can hardly find time to be home. Additionally, my mom has been unwell with no insurance. This has strained us financially but well-wishers are currently raising funds and donating to help us have funds to take care of mom for the duration that she will be with us this year to help so that we can take care of her health too as she is elderly and straining her body with three little kids.
COVID-19 has not made things better either. Younger caregivers have been denied visa interviews by the U.S. embassy in Kenya since the B1/B2 visa category interviews have been put on hold. This leaves my mom as the only option we have because my elder sister’s visa expired when she went back home to Kenya after my surgery.
My education has also been interfered with. I was scheduled to graduate with my doctor of education degree in May this year (2021) which was postponed to, hopefully, December 2021.
6. What has been the effect on your mental state?
My mental state was affected. I think I almost became suicidal. I actually requested the doctors to “put me down” because I could not go through this. They recommended a psychiatrist. I accepted. This has helped me a lot and I still have sessions with her.
She had put me on some pills to help me sleep and keep me off frequent thoughts of death. I am incredibly happy that now I do not need the pills to sleep. I exercise enough and pray.
All these, together, with a supportive community has helped me “come back to life.”
7. What kind of discrimination have you faced since your diagnosis?
I would not say that I have faced any kind of discrimination. I have so far received great medical care from my team of doctors, save for the general surgeon who caused a delay in my treatment.
My primary care oncologis,t being of African descent, made me feel more at peace with my medical team with studies showing that White doctors treat Black patients differently, leading a lot of Black people to die. That is why, my lead oncologist being a Black woman meant a lot to me.
8. What advice would you give the average woman in the community regarding breast cancer?
Check what you eat. Read leaflets of all medications you are given, especially the hormonal birth control medications. Scan yourself often in order to enable early diagnosis. With or without cancer history in your family, begin your screening earlier than 40 years.
I was diagnosed with cancer at 36. I also want everyone to know that seeing a psychiatrist is not bad at all. It helps.
9. What are the red flags you recommend others watch for?
Watch out for strange back pains, abnormal breast sensations and lumps. Women who have never have kids and those that have their first child at age 30 or above are at risk for breast cancer. Also, women who have been on hormonal treatment and women with breast or ovarian cancer in their family history are more at risk.
10. How did the community hold your hands from the time of diagnosis to date?
From my congregation, Williams Chapel Church, led by Apostle Nixon from North Carolina; my bible study group at Champion Forest Baptist Church-Klein Campus in Spring, Texas; to the Kenyan community in Houston led by Elsa Kiprotich. In addition to a prayer group by Carolyne Njenga, Rachael, Gladys Chumba, Sam Houston State University, and the higher education leadership department, my dean, Dr. Stacy Edmonson visited several times. Dr. Matthew B. Fuller ensured that I had a scholarship to enable me to study when undergoing treatment not forgetting family and friends in Kenya, I am forever grateful.
Kenyans in the U.S., at large, led by Esther Otieno, a [Fredricksburg] Virginia resident, assisted by Sharon Adundo, virtually brought a number of women to join my family and I during infusion sessions. Having stayed in the U.S. for 10 years, Otieno knew how much medical expenses burdened families and felt the need to offer me emotional, spiritual and financial support. It was wonderful. I have recordings of several of those [virtual]sessions and when I watch, I get so emotional. The meetings will go on until the end of my treatment.
Post-COVID pandemic, technology can be used to be there for patients so that they do not feel alone while fighting giants like cancer.
People should use social media and technology such as Zoom or Google Meet to offer support when physical in-person support cannot be achieved. Using technology can be just as important as being physically present. It’s literally the second best thing. With nationwide limits to social gathering due to the COVID-19 pandemic, we used Zoom sessions heavily to catch up.
Otieno’s group used zoom sessions to share what was going on in our lives and I would give an update on the progress of my treatment. They would occasionally get to say hi to the nurses that were attending to me.
During every Zoom session, we invited guest speakers to share with us the Word of God and to pray with us briefly, a period of about 30 minutes. During this time, they would share with us words of encouragements and testimonials. We had different speakers ranging from pastors, evangelists, friends, and even family members. The Zoom sessions also enabled us to meet new people and, make new friends.
These live zoom sessions were attended by friends and families who live and work in different states here in the U.S., Canada, UK, and even families and friends who live in Kenya.
Friends and well-wishers helped raise funds to pay for my elder sister’s ticket to the U.S. to be on time for my mastectomy surgery and for my mom right on time when chemotherapy began when I needed help and support more so because of the young ones.
11. Paying it forward
I feel that I will have done wrong by not educating people about breast cancer through sharing my experiences and lifestyle change. Also, I want to be there for others so that they do not go through the same alone. It is because of these reasons that I am now speaking through my YouTube channel “Candid Diana”.
Also, at Williams Chapel Church in Spring Lake, North Carolina, we are beginning a virtual cancer care group called “Safe Haven of Hope” that will be a safe haven for cancer patients from all over the world and survivors too. We will have messages of hope, volunteer counselors, psychiatrists and more, just to hold the hands of those in need.
Please call the church at (910) 436-3186 if you wish to be part of it as a patient, survivor or caregiver.
There is no one who can help someone suffer from a chronic illness other than someone who has also suffered in the same way.
12. What kind of support do you look forward to more from the people and community around you?
We are still receiving financial support to sustain us throughout this treatment year. That helps with my diet and my mom’s medical care.
We are also stranded with child care and wish to have someone to help us with child care at home or be able to afford daycare so that we can take the kids when I begin radiation and later days of recovery from the second surgery. This is because my mom leaves just after my surgery and will not be back until months later.
You can support us via CashApp ($DianaCarole), PayPal (@dawuor) or Zelle (firstname.lastname@example.org).
I am also looking for a career opportunity in student affairs leadership, preferable international student services or multicultural services. If you have a vacancy and would like to interview me, please, connect with me and I will share my credentials. I am Diana Carole Awuor on Linked-In.
Lastly, I need you to know that breast cancer is not a death sentence. Medicine and research have advanced. Be your own advocate and follow your intuition since doctors are not always right.