Metastatic breast cancer patient, Tasneem Docrat, tells us about the ups and downs of her 16-year breast cancer journey and how The Brave Bag Foundation was started.
Tasneem Docrat (51) lives in Lenasia, Gauteng with her husband. They have three sons, a daughter-in-law and two grandchildren.
In 2004, Tasneem was diagnosed with ER+ breast cancer in her left breast. Treatment consisted of six months of chemotherapy, a lumpectomy, radiation and five years on endocrine therapy, which Tasneem completed.
Nine years later, in 2013, Tasneem was diagnosed with a new primary cancer (also ER+) in the same breast. The proposed treatment was a mastectomy, chemotherapy, and another endocrine treatment for five years.
However, Tasneem declined chemotherapy. “I felt that the first time I did everything right and yet I got breast cancer again, so my reasoning was why put my body through that again? I know my body,” she explains.
She recalls the oncologist wasn’t happy but he did respect her decision.
Tasneem only took the endocrine therapy for six months as the side effects were unbearable for her. She recalls the oncologist saying, “It’s your decision, I’m just telling you what is good for you.”
Once Tasneem stopped endocrine treatment, she says she felt so much better. “I had put on so much weight from treatment. In 2012, I was at my heaviest of 81kgs. I did weigh-less and went down to 71kg, my weight then stabilised.”
Then, in 2016, the mother of three says she went on a health journey. “I started eating healthy and exercising. So, when I was diagnosed with metastatic breast cancer, in Feb 2018, I was at my healthiest.”
The metastatic breast cancer diagnosis came in a roundabout way. “I was in a car accident, in Nov 2017, and a lymph node above my collarbone popped out (a big lump under my skin). The medical team was so concerned since I had cancer before. So, numerous tests were done, including a sonar, and two biopsies of the node were taken. Yet, the doctors couldn’t find anything wrong with it.”
“A full bone scan was part of the battery of tests done and it picked up diseased bone in my upper femur, eighth rib, and second vertebra in my neck. A chest X-ray also showed there was a mass on my lung.”
“In the new year, I took all my results to my breast specialist and the lymph node was biopsied again. After the radiologist sent the results back three times, all that was found in the lymph node was necrotic tissue. It was only then that it was decided to do a biopsy on the mass on my lung. The results came back as ER+ breast cancer, so it wasn’t pure lung cancer but metastatic breast cancer on the lung and bones.”
“So, that lymph node had nothing to do with the cancer, but it was a blessing in disguise as that is how it was found that the cancer had spread,” Tasneem says.
Digesting the news
Tasneem says she was completely devastated. “We have this perception that metastatic cancer equals death as it’s not curable (only manageable) so I thought this was the end. I mean I always had cancer hanging over me, but this was different. At the time, the doctor told me, ‘If we get you to two years, you’ll be lucky.’”
“But so much has changed in treatment since then and it has been just over two years and I’m still here; going strong. Today, I see it as just another bump in the road,” explains Tasneem.
This time Tasneem didn’t refuse chemotherapy. “I didn’t have a choice,” she adds. She underwent 18 sessions; another chemotherapy was used as she already had doxorubicin before and a person can only have it once. Thankfully, after chemotherapy, the 6x6cm tumour halved.
Zoledronic acid, a bisphosphonate, was also prescribed, once a month for a year, to strengthen her bones. Thereafter, it only had to be taken every three months, which is ongoing.
Exemestane, an oestrogen blocker, was also prescribed. However, after three months a CT scan showed slight disease progression. At the next three-month CT scan, disease progression was seen again. This is when everolimus, a kinase inhibitor, was added to stabilise the disease. Unfortunately, at the next check-up, it was still progressing.
“My medical aid was getting exhausted and I had so many co-payments for drugs that weren’t working. I then asked my oncologist to investigate what could be done next and he said he would apply for me to be part of a clinical trial,” says Tasneem.
“In the meantime, I went to the UK for a holiday and met a friend who asked her colleague who worked in oncology to look at my case. This oncologist said that there was a new class of drugs, CDK4/6 inhibitors, that were targeted to treat oestrogen breast cancer. When I got back, I told my oncologist about her suggestion and gave him her report, explaining I wasn’t questioning his judgment. Rather I wanted to know if this was an option.”
CDK4/6 inhibitor clinical trial
It turns out that the clinical trial her oncologist was applying for, was for a CDK4/6 inhibitor. So, she stopped taking the oestrogen blocker and kinase inhibitor and started taking the CDK4/6 inhibitor drug in Feb 2020, along with a monthly fulvestrant injection, an estrogen receptor antagonist. Favourably, this May, the CT scan showed the tumour in her lung was decreasing in size. “The new medication is working!” Tasneem says smiling.
The Brave Bag Foundation
After Tasneem finished chemotherapy in 2018, her cousin, Noorie Rasool, along with other family members wanted to show how proud they are of her as well as give back to the cancer community. So, they donated and packed 30 ‘Brave Bags’ filled with goodies that will helps patients who are about to start chemotherapy. “It was a token of hope to say we’re thinking about you,” Tasneem adds.
“They planned a surprise breakfast and presented me with the bags.
I arranged to visit CMJAH Oncology Unit and handed out the bags. It was incredible! I told Noorie that I think we can take this to another level. So, The Brave Bag Foundationis actually Noorie’s brainchild, I’vejust expanded it.”
In Oct 2018, the Foundation was registered as a NPO and Tasneem was reeling in donations. Since then over 2000 Brave Bags have been handed out.
After chatting to the nurses to find out what more can be done, The Brave Bag Foundation started handing out sandwiches, tea and coffee to the patients every Monday in 2019. “This brought another dynamic and added so much value to the patients,” she says.
The Foundation has also spearheaded other projects like grocery hampers at CMJAH and Polokwane Hospital and have received good support from corporates which has enabled them to reach other hospitals like Helen Joseph Hospital and to donate Brave Bags in Cape Town.
My soul food
Since the outbreak of COVID-19, Tasneem and the Brave Bag Foundation team had to stop their Monday visits to CMJAH. “I can’t wait until we can go back, I miss my Mondays – it’s my soul food. I can’t put a value on what it does for me emotionally to give back. There is no amount of money in the world that can replace the feeling that you get when you help someone, even if it’s just putting a smile on their face. It’s me paying my rent on earth, community work is part of me.”
For more info, visit The Brave Bag Foundation on Facebook.
Images by Studio Images Photography
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Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. email@example.com