Beep, beep, beep!…
Sana was at work when she had received a message on her phone, to call the receptionist from ‘BreastGram’. Sana knew instantly that it couldn’t be good. They had never called her — her mammograms, which she had always had religiously since she turned sixteen, had always been clear. But in the back of her head, Sana always had the fear of getting breast cancer.
It sounds ridiculous. Right? But her fear was not baseless.
Sana has a family history of BRCA-1 and BRCA-2 gene mutation. Lots of her family members from her father’s side have died of different types of cancers; two cousins — breast cancer, grandmother — breast cancer, her grandfather — colon cancer, her father’s sister — breast cancer. Her dad tested positive for the BRCA-1 gene mutation; the breast cancer gene, which was a shock, because he is a man and you wouldn’t think that a man would have to worry about or even consider it.
“Look, it’s in our family. So you and your sister need to get tested for BRCA gene mutation.” Sana’s mom had said.
Sana was sixteen when she was tested for the first time. Fortunately, her sister tested negative for the mutation, but Sana tested positive. And that’s when Sana’s fear took a strong foothold in her mind that she would get cancer one day. However, in the last ten years, Sana had never thought of it, not in any probing way.
After Sana received the message from ‘BreastGram’, without wasting even a minute, very fearfully, she called the receptionist back at the doctor’s office. Her heart was beating like a wild animal trying to escape her chest.
“The results of your mammogram have shown something in your left breast; the doctor wants to check up close,” the receptionist had said. “Sana, can you come in for some further tests?”
Sana was well known for her conformity when it came to her health and well being. Very scared, Sana called Dr. Shobha and scheduled an appointment. Three days later, Sana was in the office by herself and tears were trickling down her cheeks. She was shaking, gulping a mouthful of air that wouldn’t make it to her lungs. In her mind she had bolted, she ran a thousand miles in a single heartbeat, but in reality she had merely flinched.
I can’t die now, not before I get married and have children and grandchildren. I’ll be devastated— I can’t bear to die.
Further tests results showed no signs of cancer. It was just a benign lump. But this phone call was the last straw. Even though Sana didn’t have cancer yet, she always felt like she was going to get it; it was just very scary and overwhelming. Because of her family history, the fear had outweighed everything else. Sana went to a string of doctors that weren’t specialists in the field and they told her right away, “we are just cutting off your breasts.”
It is so harsh to even think that.
Sana decided to see a specialist in breast cancer, Dr. Seema; an associate attending surgeon at the breast surgical service. After a formal greeting and overviewing Sana’s test results and family history report, Dr. Seema had enough background to discuss this matter. She searched for signs that Sana’s body might be giving away, but she didn’t find any.
“BRCA- 1 and BRCA- 2 are genes that everyone has. They have normal functions in the body, largely to repair damages that’s done to DNA.” Dr. Seema had explained.
“That’s good to know.” Sana had nodded with an expectation of positivity. But her heart sank back into depression as Dr. Seema continued.
“What’s more important to know is that sometimes people will inherit an abnormality in one of those genes that causes it to malfunction which makes them susceptible to breast cancer, ovary cancer, and to a lesser degree to certain other kinds of cancers.” Dr. Seema finished.
There had been a jarring disconnection right at that moment between Dr. Seema and Sana. Cancer is a fraught area for everyone — for people who have it or not and even more when there is a great possibility of such a bizarre misfortune. Dr. Seema had expressed the reality that almost guaranteed that Sana would have breast cancer at some point in her life. Tough talks are difficult for doctors as well as patients. Sana sat quietly, eyes focused, lips tight, her whole expression momentarily solid. Then the expression dissolved and she heard a small voice in her head.
Maybe it isn’t discussed, or it is discussed but it didn’t register or is couched in a way that is communicated poorly.
Sana desperately wanted to hear something positive and decided to go for a second opinion. This time it was Dr. Tripti, a gynecologic oncologist.
“We won’t do the double mastectomy for treatment, we will do it for prevention.” Dr. Tripti had said with very palpable concern.
“Hmm… but is there a chance of relapse or risk of malfunctioning genes lingering around?” Sana had asked, feeling very withdrawn.
“For all intents and purposes it is the same mastectomy that we do for treatment. We remove all the breast tissues as much as we can, and then you follow through with a reconstruction.” Dr. Tripti put forth her dire prognosis.
To be there alone and digest that news — it completely undid Sana. The silence settled, its pressure was heavy. Beads of sweat fell from Sana’s forehead onto her chest.
There was no wiggle room left for her. There were two courses of possibilities left — either live in fear for the rest of her life, or go for surgery. It was hard to decide, but it forced her to stop in her tracks and reassess her life. She had to make a decision sooner rather than later. Weighing all the pros and cons, Sana had almost made up her mind but not completely yet to go for preventive double mastectomy.
“No, no, no!! You can’t do this; you can’t mutilate your beautiful body!” Sana’s mother had started crying on the phone when Sana had informed her of her decision.
“But mom, my risk for breast cancer by the age of 50 is as high as 50%, whereas the average population is at 2% chance, and by the age of seventy, I have between 58-87% chance.” Sana had elaborated the scary statistics.
“I realize that the whole family has this black cloud over them in terms of cancer, and how much it has affected them; but sweetheart! You are only twenty-six.” Mom had tried to deter Sana from her decision and wouldn’t stop crying. For Sana, she knew what she had to do, so she had no real panic. Yes, Sana was going to miss her breasts and she never denied that.
Right now I have an hourglass body shape, and after surgery I could be a pear shape. Sana had giggled.
When Sana went jogging, she always wore two bras, because she was always afraid it would tear her skin tissue or loosen it if she wore one. But after she had started thinking towards the direction of going for a mastectomy, her thoughts changed. Sana was more relaxed for her future.
These breasts are not going to be here forever; it’s alright!
Sana had always felt her breasts were enormous for her body frame. They were a 32 G.
I love them, and I hate them. She had giggled looking at her breasts and caressing them.
Well, even though breasts were difficult, and they had been challenging, they were a huge part of her.
They are so feminine.
To Sana, breasts represented love; hugs. But until Sana would have the surgery, she wouldn’t know that. She could feel the total relief or total loss. While all these thoughts were running wild in her head, Sana didn’t think she was going to miss her breasts too much. They were great; awesome, but the alternative was more traumatizing. So keeping them and dealing with cancer would be a lot worse. For Sana her breasts had become more like a ‘ticking time bomb’ than anything else.
Over time, she developed the capacity to mentally step outside of herself and observe her thoughts and feelings without getting caught up in them, which then meant she had more control over them.
Everyone kept saying, “you don’t have to do it.” Sana knew she didn’t have to do it, but she wanted to do it. She didn’t want her parents, her future husband, and children to go through the agony of her death because of cancer, which she could prevent by going through preventive double mastectomy then, rather than later. While Sana was contemplating her decision, she decided to have a family dinner with her aunts, her mother, father, and a few cousins.
“It sounds like your doctors have you well prepared for what’s going to happen.” Sana’s aunt said.
“I know that just because I am thinking of doing it so young, makes it out of the norm. But I am doing it preventatively.”
“And your young age will make it easier and quicker to heal; you are not a sixty-five-year-old lady.” Listening to her aunt was a big relief.
“I saw Ram’s sister die of breast cancer, it was very painful; emotionally draining.” Sana’s mom had said, wiping off her tears.
“It’s not knowing, that is so hard.” Sana’s dad, Ram had said, squeezing mom’s shoulder. “Cancer can shuffle her values like a pack of cards. Sometimes the card at the bottom of the deck turns out to be the top most card, the thing that really matters.”
It was almost certain that Sana would get breast cancer. The thought that it could kill her one day was giving Sana crazy emotional responses to it. She was always haunted by these thoughts. Sana was afraid that breast cancer was going to sneak upon her. She had seen family members taken away to cancer and she didn’t want to deal with it. Sana was done with it and she was done with her family having to deal with it. Sana wanted to take control over it in her time frame. Somebody could say to her, “we think you should do it later in life.”
No, I’m sorry, I’m doing it now.
At that time, Sana was twenty-six years old and lived in Kolkata with her parents. She worked at a reputed pharmaceutical company. Her dad had always been in her everyday life. He had lost his entire family from cancer. It turned out her dad was very accepting of Sana’s decision and had no qualms about carrying out the procedure.
“Sana, sweetheart! We’ll do the best we can to support you in every way you want. I think the post-operative results will be great. But you need to be your own advocate,”
her dad had said with his eyes drawn heavenward; his face frozen in the dark, the light from the bulb had leaped across his square glasses.
“When somebody close to you dies and you get through it, then you realize what’s important in life. If you are lucky, it changes you and it changes your values. The essence of life really comes down to how many people you love, and how many people love you.” There was a strong conviction in her dad’s voice.
“Sleep over it tonight — strong and hard.” Sana’s dad had walked down the hall to his room with a positive smile with no agitation, no embarrassment as if there were a perfectly mundane explanation.
That night Sana couldn’t sleep a wink. The house was so quiet that she could even hear her cells dividing. There were so many ‘what-if’s’ that Sana could drive herself crazy thinking about them, but the fact remained that a glimpse of her own ending was not something she wanted to dwell on. After contemplating for several days, she made the biggest decision of her life.
Sana chose to go for preventive double mastectomy.
On the day of surgery, she woke up very depressed. As she was wheeled into the operating room, everyone in the medical fraternity was there: oncologist, surgeon, anaesthetists, and a sprinkling of nurses. Everyone was looking at the large computer screen. Sana was super nervous, super nauseous; she just couldn’t stop thinking about it. She was scared to death. It had felt unreal. She was not sick, yet going for surgery. But she stayed firm with her decision; nothing could deter her now.
Thankfully, the surgery was quick. They removed all the breast tissues along with the nipples. It took a couple of hours, and Sana was released the next day from the hospital. Everything went great; the doctors were very pleased. Sana was young and healthy, and she had bounced back perfectly. Although Sana healed faster than she had thought, she lost a huge amount of weight and looked as thin as a string bean. Parents were the biggest support in her battle. All Sana needed at that time was lots of eating, drinking, swimming, walking, and laughing with her parents.
After a month, Sana had to go for the second procedure of the surgery which was for reconstruction of scar tissues. Nerves had started to come back and grow.
I feel beautiful with no fear of cancer in my mind.
Sana looked at her doctor and they had smiled in unison. A smile of pleasure and satisfaction. A smile of relief. She was walking on air with clarity and energy.
“You were very decisive, very well grounded, very knowledgeable, and that made our task easy. The process went smoothly. You knew the procedure; why you are having it; what your decision points were and that helped build up our confidence.” Dr. Seema had taken Sana’s hands in both of her hands to admire her decision.
As Sana recovered fully, she never regretted her decision. It is her body and she has the right, and ability to make decisions that suited her best. Body image fear can run deep, but Sana never let it become a drawback. She is just happy that she can walk around healthy. Breasts are integral parts of a woman’s body, but they don’t define a woman’s body. Women don’t just have the role of wife and mother to prove their womanhood, rather there is much more to it. They have the duty to themselves, the right to live their life and pursuit of happiness. For Sana, physical recovery was maybe half; the other half was mental. Earlier, there were a multitude of fears — the fear of going back into the world and of having this invisible sign board hanging around her neck that read, “this person has tested positive for BRCA-1 and BRCA-2 gene mutation.”
Sana’s breasts are gone, but she doesn’t feel like less of a woman than she was. As a woman, she took the opportunity not only to reassess her life, but also took on a whole new direction. Maybe, something that Sana always wanted to do, but for many reasons she has held herself back, as in her case becoming a full-time writer.
Six months later, Sana and her dad were waiting in the outpatients waiting area. It had been a long wait. Sana had already read all the gossip magazines 2-3 times. Finally the breast care nurse came out hurrying and beckoned them in.
“Great news,” the nurse said, before they even reached the consulting room. “The test results were crystal clear. Your healing is going on perfectly without any sign of a defective gene mutation. ”
“Yes!” Sana’s dad said, doing a fist bump. “I knew they would be!” And he did. He had been telling Sana all week that they’d be clear. Sana was stunned. She couldn’t contain the joy of relief. They said goodbye to the nurse for another one year until her next check-up.
Now she just has to take her everyday medication and once a year check-up. Sana’s emotions tussle sometimes, but she feels free spirited, a prisoner who has been out of prison after twenty-six years of jail time. But she also feels a sense of closure — Sana’s long time thought, as a future breast cancer woman, is over, leaving a void in her life, although a welcome void. Yes, she has normal worries of life but one thing she doesn’t have to worry about anymore is breast cancer.
Sana is sixty-two years old now with no sign of malfunctioning genes or trace of cancer.
She has joined the cancer-relief society, just so she can get involved in the campaign to bring awareness among those young and old women who might have BRCA-1 and BRCA-2 gene mutation running in their family. She has a purpose in life to bring awareness to other women, so they don’t have to go through the pain and agony of cancer. They can prevent it while they still have time. Sana is happily married to a loving husband of thirty years and has two wonderful boys.
Today, Sana had her yearly check-up and the result showed no sign of cancer again. She couldn’t comprehend it’s absence. Filled with exquisite numbness, Sana felt drunk with it and wanted to shout: Here is the proof: nothing touches me. Sana took a leap with joy! She was the same taut, undefeated, cancer-free woman.
Cancer, you messed with the wrong chick! You didn’t end me; I ended you!
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