How Tusiime won battle against breast cancer

In 2017, Linda Tusiime felt a lump in her right breast, forcing her to go for a medical check-up.
“It was small, smooth to the touch and felt as hard as a marble. While it was painless, its presence bothered me. Initially, I knew it was just a normal lump that could be removed and that was it,” Tusiime says.
“So when the surgeon suggested a daycare procedure to get it out, I booked the Easter period so that it would not disrupt my work,” she adds.
The procedure was anything but simple because despite being painless, she felt every prod and pull.” The lump was taken for testing and she waited for two weeks, not worried that the results might be life changing.

On a Friday evening, Tusiime received the results that she had breast cancer. To make matters worse, the doctor’s explanation that she had a lump in her breast, which required surgery did not help as she felt the air in her lungs get sucked out faster than she could replace it. Her mind was worked up with all manner of thoughts that it took her friend, one Carol, to help recollect her scattered thoughts.
“While I had wanted to let my mother know, Carol proposed that I tell my sister. I do not know why, but it worked. So for that weekend, as we made plans on where to go for a second opinion, which oncologist to visit and the like, the secret was only known to the three of us,” she says.

Seeking advice
Tusiime had first met Dr Fred Okuku, an oncologist at the Uganda Cancer Institute (UCI), in 2015 when her family was looking for expert opinion following the discovery of a tumour in her father’s brain after he suffered a stroke.
“It was him who had asked me to advise the family to take Dad home and make him comfortable. While that was extremely upsetting, after doing some further consultations, we listened to his recommendation and ceased all fundraising plans to seek further treatment,” she shares.

Naturally, he was the first doctor that Tusiime’s sister advised her to book an appointment with. Meeting him the next morning, his first statement after perusing through her medical reports is forever etched in Tusiime’s mind. “This is going to disorganise you for a while, but don’t worry, it’s still early and you can have this managed, so you can enjoy the rest of your life,” she quotes Dr Okuku as saying.

For one that had started seeing her coffin, the words signalled a ray of hope. “He acted like we were the only people he had to see that day as he would pause after answering a question, waiting for his words to make sense to us as he anticipated our next question,” Tusiime says.
By the time they left, they were certain of the next course of action- need for another surgery, either a mastectomy or lumpectomy, as the first surgery she had undergone had left tissue, which had tested positive for cancer.

More to that, while the cancer was in its early stages, her underarm lymph nodes had to be checked. The cancer was ER-Positive thus feeding off the oestrogen hormone.
Since Tusiime had already undergone one surgery, immediate hormonal therapy was ideal to curtail cancer spread as they awaited surgery. Lastly, depending on the findings after surgery, there were chances of undergoing chemotherapy before radiotherapy.
But what lingered was where to do the surgery so that there would be no need for another.

“Unlike the first surgery, I now had something real to be concerned about, so I was very careful. With the help of my sister’s doctor friend, I made an appointment at the Agha Khan University Hospital in Nairobi, Kenya, to see a highly recommended surgeon,” she says.
On June 29, Tusiime was nervous and trying her best to be ready for second surgery as a lot was at stake. “I had visited Prof Ronald Wasike a month prior and confirmed he was a specialist in breast cancer surgery and an advocate for breast conservation surgery in treatment of breast cancer,” she says.

“Despite all the achievements he and his team had registered, he made it clear that they would use frozen section procedure to figure out the extent of the cancer they were removing. If the first removal of tissue still showed positive margins, he would have no option but perform a full mastectomy,” she adds.
Aware that a mastectomy was a possibility, Tusiime read about it for emotional preparation. “I also read about breast reconstruction and learned that it is not as a regular breast surgery and for that, I was ready to settle for implant reconstruction seeing that I did not have enough fat in my body for a flap reconstruction,” she says.

First operation
On the day of the surgery, Tusiime woke up four hours later feeling groggy with a dry mouth. But she remembers her sister, exclaiming, ‘Linda, you still have your breasts!’
“I felt so lucky and I also learned that most of the cancerous tumour had been removed at the first operation. And after I had started hormonal therapy [a lifesaving pill called Tamoxifen, which is now her daily ritual], any possible growth that could have occurred was hindered. Therefore, Prof Wasike and his team found there was not much to remove, hence no mastectomy. Better still, tests on the lymph node samples removed from my armpit on the right side showed the cancer had not yet spread.”
After the second surgery, Tusiime was told she would have to do chemotherapy and then radiotherapy.
“Planning for chemotherapy was extremely difficult as one has to be in the right physical state to even start the treatment,” she recalls. As such, she failed the first series of tests done before she could start.

“I was extremely stressed that I had lost a lot of weight and was not eating like I should. Finally, two weeks later, I was given the ‘all clear’ to start. I had chemo done in Mulago and the nurses at the hospital were the best I have ever encountered,” Tusiime says.
Even then, it was a bumpy journey with four treatments done once every three weeks and each left her weaker.
When her hair started falling off, her sisters took her to a salon to have it all shaved.

“It was easier to get rid of all of it than to lose it in bits.” After the chemotherapy, there was a month’s wait before starting radiotherapy. “At the time, the machine in Uganda was not functioning, hence a trip to Nairobi where I had 25 cycles done. Although the daily trips to the hospital were monotonous, it was the easiest part of the treatment because it was painless. Even when the skin around the breast area started darkening, I was armed with aloe vera to reduce the itchiness,” Tusiime says.
She returned home just before Christmas in December 2017, seven months after diagnosis.

“I was finally done with treatment. Given the stage at which it was caught and the necessary precautions that were taken, the doctors all said my prognosis was good,” Tusiime says.
News about a life threatening illness affecting one family member probably affects the rest of the family in a much more intense way than the sufferer. However, having extra information after that visit with Dr Okuku helped Tusiime and her sister, thus making it easier for them to break the news to the rest of the family.

“That is not to say it was an easy moment but having had three days to cry it out, on Sunday, when I shared the news, I was starting to get a grip of it,” she recounts.
Besides, after the passing of her father in 2015, Tusiime did not want to take them through all the pain in as much as they were her greatest motivators. For that, she fought hard to be positive, keeping them posted with every development.

Additionally, Tusiime learnt that friends are greatest assets during times of trial. “They were a great support and way for me to forget what I was going through. I will forever be indebted to them,” she says.
Tusiime is also grateful to her workmates. “I know it was not easy to be around me during those times and yet they still managed to make my escape from my reality almost pleasantly. Going to work on the days I felt well enough was also a great source of comfort,” she says.

Coming out
Tusiime shares her journey on her blog, lumpsaway.ug for several reasons. “I knew so many of those around me had questions that they were afraid to ask. Therefore, putting it out there eliminates that problem. I also had spent a lot of time reading articles online of women who had been affected like myself, but it was really hard to see any from women in Uganda. When I was first diagnosed, I did not want to talk to anyone. I wanted to do research, find blogs and read them to better understand what people were feeling. I am eternally grateful to all these women out there who were brave enough to tell their struggle because in those initial days, they are the voices I leaned on.”

Tusiime says she was fortunate in her treatment owing to the support she got and after she was declared cancer free, together with her friends, they sought audience with the Uganda Cancer Society to figure out how they could help others.
“They mentioned a project that had failed to take off because of the need for funding. When women with cancer start chemotherapy, they could get a wig to cope with the hair loss. However, when a woman has had a mastectomy, getting a breast prosthetic is incredibly difficult because they are costly,” she says.

“I remember the emotional toll my treatment took on me, yet I did not have a mastectomy and I really feel for these women who, on top of dealing with this, find difficulty in assessing something that could make going back to normal easier,” Tusiime adds.
For that, she is seeking to help the Uganda Cancer Society set up a ‘cottage factory’ that will manufacture and distribute low cost breast prostheses to Ugandan women who have undergone mastectomies during breast cancer treatment. “For that, I seek any donations to make this possible.”
That said, Tusiime encourages women to go for medical check-up regularly because the earlier the diagnosis, the easier it is to deal with it.

Challenges in treatment
The Uganda Cancer Institute is currently faced with a challenge of inadequate diagnostic equipment, with most of the tests done in private facilities outside the hospital. This costs patients large amounts of money. For example, the institute’s main radiotherapy machine currently performs below capacity, not withstanding breaking down on regular occasions.

The Cobalt 60 machine was installed in 1995 and has become less effective with its radioactive substance decaying off as a single patient takes long time while receiving treatment.
On a daily basis, the radiotherapy department receives about 100 cancer patients who need external exposure to radioactive waves to receive relief against cervical cancer, prostate cancer, breast cancer and other organ cancers.

Common Cancers in Uganda

According to Referral Guidelines for Suspected Cancer, Uganda has different cancers clustered according to their groups below:

Cancer in HIV patients
Kaposi’s sarcoma
Aids associated lymphomas

Children and young people
Burkitt’s Lymphoma
Retinoblastoma
Leukaemia
Lymphoma
Breast cancer
Upper Gastrointestinal cancer
Oesophageal cancer
Gastric cancer
Liver cancer
Pancreatic cancer
Gall bladder cancer
Lower Gastrointestinal cancer
Colorectal cancer
Anal cancer
Head and Neck cancer
Thyroid cancer
Gynaecological Cancer
Ovarian cancer
Endometrial cancer
Vulval cancer
Lung cancer

Genitourinary cancer
Prostate cancer
Renal cancer
Bladder cancer
Testicular cancer
Penile cancer
Skin cancer
Melanoma

Squamous cell carcinomas.
Basal cell carcinomas
Haematological cancer
Lymphomas
Plasma cell dyscrasias
Bone and soft tissue sarcomas
Bone sarcomas
Soft tissue sarcomas
Brain and CNS tumours

[email protected]