Testimony of a breast cancer survivor

(deborah.otieno1@gmail.com, @jedebz)

Breast cancer is a disease that is increasingly threatening lives globally. Carolyne Achieng Otieno is no stranger to this disease that threatened to rob her off her dreams. However, she decided to fight the fiercest battle she has ever faced in her life. This is the story that she shared with Standard during her interview.

Standard: When did you find out you had contracted breast cancer?

Carolyne: It all started when I was 20 years old. I knew something was wrong when I noticed  a bloody discharge on my bra. I was very surprised and did not know what to make of it so I hesitantly shared with my big sister what was happening to me, because I was very embarassed . She then told my uncle (my guardian) and he sent me some money from abroad where he resides, for me to visit a physician at Nairobi Hospital.

Standard: What did you discover after visiting Nairobi Hospital?

Carolyne: They were not able to detect anything serious at that point. This is because my breast ligaments were dead. However the discharge did not stop flowing so I went to see another physician. He did not think my condition was serious either because he thought I was going through some harmless hormonal imbalance, which is quite common among young women in their 20’s.

So he decided to give me some vitamin A tablets which I took for 1-2 weeks but there was no change in my condition. What kept disturbing me though was the lump that I felt in my breast. That is when he decided that I needed to do a biopsy. A biopsy is a procedure whereby a part of the breast is removed then checked in the lab for any abnormalities. In such a case, a part of the lump is cut out and taken to the lab to determine whether it is cancerous or not.

So when the doctor proposed this, I vehemently refused to do the biopsy because I doubted whether my condition was serious.  For the next 2 years, I did not focus on the matter. Meanwhile, I continued to experience a needlelike sharp pain in my breast that would come and go especially during the cold season.

Standard: So what did you decide to do next?

Carolyne: Luckily my uncle invited me to Austria for 3 months to visit him and his family. During my stay he decided to take me for a medical checkup where all the tests I had previously done  were repeated. At first they did a mammogram then an ultrasound to see if there were any hidden lumps. These tests were repeated 4 times to confirm the existence of the lump. They found a lump so the next test they carried out was to determine whether my lump was cancerous or not. This is the point when they referred me to the largest referral hospital in Vienna.

Standard: What happened in the hospital in Vienna?

Carolyne:  When the test results were out, I spotted them discussing amongst themselves in German. That is when they broke the news to me. They confirmed that I had breast cancer. They added that it had spread round the nipple though the breast cancer was still at a stage that could still be contained.

Standard: Which treatment options did they give you at this point?

Carolyne: I was to either do a lampectomy or a masectomy. A lampectomy is the removal of only the lump in the breast whereas a masectomy is the complete removal of the breast. They advised me that since the cancer had spread around the nipple, it had affected almost the whole breast so if I was to remove only the infected part, I would be left with almost nothing. Furthermore lampectomies still leave patients at the risk of  reoccurrence of the cancer since a part of the breast is left intact.

A masectomy on the other hand sounded like the best solution though it was quite a difficult option to take because it meant losing my whole breast. Its advantage was that chances of cancer returning were much lower. Honestly I was quite confused as to which option to pick so I found myself gazing at my uncle to help me choose but he was quickly shown his way out because this was a decision that I had to make on my own.I decided to go for the masectomy so the operation was scheduled to take place the day after Valentines day.

Standard: What happened next?

Carolyne: I packed all the things that I needed for the operation then I went straight to google and read everything I could find about breast cancer. Later, I went to the hospital and the operation went well. When I woke up, I did not feel like anything had happened. Something I dreaded though was the procedure the nurses carried out on me for the next 4 days.  Every evening they would take out waste from my body, a procedure normally carried out on patients after undergoing an operation.  It was so painful that one day I ran away and hid in the toilet but the nurse found me and carried out the procedure. Those were some of my worst moments.

Standard: What was your worst moment?

Carolyne: The day they removed the bandage from my breast was my worst moment.  This was the moment it finally dawned on me that Idid not have a breast. That is when I broke down. I wondered how I was going to walk or dress so they asked me if I needed a psychiatrist but I  declined knowing I would somehow get over it.

Standard: Which other challenges did you face?

Carolyne: I became very sensitive when people stared at me because I thought they had noticed that one breast was missing. I also suffered from low self esteem and I felt sad that I could not get to wear the latest chic tops that young ladies love to wear.

Standard: How did you get through these difficult moments?

Carolyne: Time and a prosthesis helped me feel better. As time passed, I started getting used to it. Moreover, a  lady brought me a prosthesis. A prosthesis is an artificial device that replaces the actual missing body part. I inserted the prosthesis in my bra and this calmed me down because I felt people would not know that my breast was missing.

Standard: What kind of treatment were you put under to treat the breast cancer?

Carolyne: I was put on hormonal therapy. This meant I would take drugs daily for 5 years. I am grateful to God I did not have to go through chemotherapy. However hormonal therapy also has its downside. The drugs came with strong sideeffects. I suffered from hotflashes and I put on a lot of weight.

Standard: what did you do to move on?

Carolyne:  When I got back home 6 months after,  I joined a support group and met other ladies who were going through the same disease however I was the youngest in this group. Talking to the media about my experience also helped me to heal. Moreover, drawing strength from God and support from my family and friends helped me a lot.

Standard: Can you say that you are healed now?

Carolyne: I have walked the walk, 10 years down the line, I am proud to say that I am a conqueror. Apart from the tests that were performed to show that I am healed, I also believe that my battle is over. In order for one to be truly healed, they need to believe that they are actually healed.

Standard: Which advice can you give young women concerning breast cancer?

Carolyne: Women should self examine their breasts to check for lumps daily. This should be done one week after menstruation so that the disease can be detected early enough to avoid losing their breasts. This can be done by lying down then putting one hand behind one’s head while using the tip of the fingers of their other hand to gently press their fingers in circular motions round the whole breast including the nipple. They should also look out for any form of discolouration, rough texture or discharge from their breasts. Sometimes people develop lumps during their menstruation or have other lumps that are not cancerous like benign lumps and cycsts. These disappear after treatment so women should not panic when they discover they have such lumps. The only time they will confirm that they have breast cancer is when the lump is tested and found to be cancerous.

Standard: How does breast cancer affect relationships?

Carolyne: I remember when I was diagnosed with breast cancer, my boyfriend of 5 years did not take it too well. Probably because of the stigma associated with the disease and his perception that I may never get children. I want to reassure people that breast cancer does not prevent women from giving birth. Infact there is a testimony of a breast cancer victim undergoing chemotherapy with three children.

Standard: Who is likely to be affected by breast cancer?

Carolyne:  Both women and men of all ages and races. In my case, I was diagnosed with the disease at just 22 and people were so shocked, nowdays even 17 year olds contract the disease.

Standard: What should be done to curb this disease in Kenya?

Carolyne:  A bill should be passed in parliament to disburse prosthesis, medicine and medical tests at a subsidized price. A prosthesis goes for Ksh 20,000 whereas the drugs are very expensive for women from rural areas.

Standard: What is your parting shot?

Carolyne: There is life after breast cancer; I am a living example. Also, men should strive to support women affected by the disease instead of running away from them.