By Yu Li P’ing
It is truly terrifying when cancer rears its ugly head – what more when the person affected is in the prime of her life. To commemorate Breast Cancer Awareness Month, here is the story of how one brave mama battled breast cancer and refused to let it stop her from nursing her precious firstborn.
I was diagnosed with breast cancer at the age of 33. My husband was the one who first discovered the lump and so we quickly scheduled an ultrasound followed by a biopsy. I still vividly remember the room where the ultrasound was conducted. I immediately knew something was wrong when the technician asked me to wait while she summoned the radiologist, who redid the ultrasound. They were silent while they gazed at the screen, nodding at each other in acknowledgement. I suppose they could not say anything about their diagnosis until it was verified by an oncologist.
That same afternoon, I received the dreaded call from the oncologist. I was asked to go to the hospital immediately. I went with my husband where we were informed of the diagnosis – a Stage 3 ductal carcinoma. In medical terms, the tumour was ER/PR +ve, Her2Neu negative; no lymph nodes were affected and the tumour had not metastasized, so staging was T3N0M0 (see sidebar). Over the course of two hours, we asked loads of questions and were given a detailed treatment plan. I managed to hold it up until the drive home, where I fell apart, devastated. I felt as if I had been completely broken.
Because I was quite young when I was diagnosed (I’d be rich now if I had a dollar for every “oh but you’re so young!” comment), I was hit with every treatment possible – a mastectomy, chemotherapy, radiotherapy and hormonal therapy. I gave myself the superhero persona of ‘Chemo Girl’ to cope with the cocktail of chemicals that the doctors were pouring into me. Thankfully, I responded to treatment very well. After my third chemotherapy session, my tumour had disappeared and a biopsy showed huge, clear margins. Full of relief, I thought I could stop chemotherapy then, but my oncologist said no. I went on to complete all six sessions, followed by the mastectomy and 18 sessions of radiotherapy.
Throughout everything, my husband was my solid rock. He was there by my side every step of the way, taking care of everything at home and staying strong for me in the face of so much uncertainty. He supported me completely when I was going through the emotional rollercoaster of accepting and understanding my diagnosis. My family was another source of strength, encouragement and support throughout the journey. My siblings were my number 1 fans, cheering me on at every milestone I achieved (be it the next round of chemotherapy, radiotherapy or the additional 1km I added to each run I completed). My parents took turns to live with me and care for me round the clock. My father accompanied me throughout my runs on the bicycle and encouraging me to push on. My mother cooked for me tirelessly, making nutritious and delicious food for me. Without their love, prayers and support, I would certainly not be able to have gotten through all that I did. Above all else, my faith in God as well as the prayers of my friends and family lifted me to heights I would’ve never known. My church friends even put a schedule together to bring food for my husband and me. I was surrounded by so much love and blessings!
My oncologist also gave me some great advice. He has the worst bedside manners (bless him!) – he once asked me, “How do you feel?” I replied, “Some days I’m upbeat and other days I just cry non-stop…” He interrupted me uncomfortably and said “No… I meant how do you feel physically? Any pain anywhere?” Being the professorly type, he would willingly debate with me whenever I challenged him on my treatment plan and tried to bargain with him on cutting out treatment that I hoped was unnecessary (of course this was based on my oncology “experience” – namely, Google and heaps of medical research papers). You see, I’m a business developer and I negotiate for a living. I remember printing document after document and highlighting paragraphs to argue my case. But one day very early in the diagnosis, and after he was quite frustrated with my arguments, he told me: “I know you’re battling something that is completely out of your control. You are used to being in control and I’m sorry, but the sooner you realize this is never going to be in your control, the better. Instead, why don’t you spend your energy on what is still in your control – what makes you, you.”
He explained that I need to still keep alive the things that drive me, whether it was my work or my regular exercise. He told me that I needed to protect that and not let the battle with cancer and the treatments take over. So I did just that. I spoke to my manager and made plans to continue working albeit at a much more flexible schedule. I continued running and working out at the gym as much as possible. I would give myself a couple of days rest post-chemo and then got back up running and back to the office. Of course I got weaker due to the cumulative effect of my treatment, and my intermittent breaks got longer before I could get back to work or the gym. A month after my chemotherapy treatment was completed, I joined a 10-km run and never looked back.
I took Tamoxifen for three years and due to the good prognosis, my oncologist allowed me to temporarily come off the medication to try for a baby. I would have to complete the remaining two years of my course of Tamoxifen after I weaned. Our conception journey was not easy. We had been informed that with all my treatments, we had less than a 50% chance of conceiving naturally. We tried for 1.5 years, enduring a miscarriage during that time, so when I saw that the pregnancy test was positive again, I remained cautious and could not let myself believe I was truly pregnant until I had completed the first trimester. We were ecstatic about the coming baby! After all that we had been through, the pregnancy was like a ray of light.
I knew I wanted to breastfeed fully and made sure that I read up as much as I could. Ultimately however, I was not prepared for the challenges of breastfeeding. In addition, my gynaecologist and doctors were not too encouraging. They wanted me to get back on Tamoxifen as quickly as possible and I wouldn’t be able to do that if I was breastfeeding. There was unfortunately not much medical support or follow-up provided on breastfeeding after I left the hospital. I depended a lot on breastfeeding forums and websites.
I had to equip myself with information about breastfeeding as a breast cancer survivor but there are very limited resources on this, and no support groups available. I was searching but could not find one. The general breastfeeding support groups were not too helpful for me as the challenges I faced were very different from the average mother.
BREASTFEEDING AS A CANCER SURVIVOR
It was a very difficult time for me after the birth of my child. I was always worried about her wellbeing and if she was thriving on my breast milk. I didn’t want to rely on formula and so I put in the effort to breastfeed and express. At one point I was expressing every two hours, waking through the night in the hope of training my one breast to produce more. I tried every supplement and every galactagogue possible. I had known that I was not likely to be able to fully breastfeed but I still wanted to breastfeed exclusively for as long as I could. On hindsight, I wish I had come to terms earlier about the challenges of only being able to breastfeed with one breast, which had then resulted my baby not getting enough milk from me. I had hoped that my body could compensate and produce enough from just one breast. In the end, I needed to supplement with formula as she was losing too much weight. I developed postnatal anxiety and became completely obsessed with feeding her and making sure my milk supply did not drop. I was not myself and it was one of the hardest times of my life, even worse than when I was battling cancer.
I felt so blessed during this difficult phase because no matter how anxious I was or how down I was feeling, I remember fully enjoying breastfeeding my child and being able to bond with her and comfort her even though my supply was not sufficient. Between the tears of emotional turmoil and physical pain, being able to continue to breastfeed my child and having my husband’s support helped to pull me out of my anxiety. Slowly but surely I recovered and was able to return to work after maternity leave. I decided to seek out donor milk so that I could take my child off formula supplementation. She is now fully breastfed – half from my own supply and half from the kindness of so many amazing mothers on Human Milk for Human Babies. I am so thankful for all of you!
It has been a long and hard journey but I am so proud to have made it through to the other side, with the support and love of my husband, father, mother, sisters and brother.
ABOUT BREAST CANCER
After someone is diagnosed with breast cancer, doctors will try to figure out if it has spread, and if so, how far. This process is called staging and describes how much cancer is in the body. It helps determine how serious the cancer is and how best to treat it. Doctors also use a cancer’s stage when talking about survival statistics.
The staging system most often used for breast cancer is the American Joint Committee on Cancer (AJCC) TNM system, which is based on 7 key pieces of information:
- The extent (size) of the tumor (T): How large is the cancer? Has it grown into nearby areas?
- The spread to nearby lymph nodes (N): Has the cancer spread to nearby lymph nodes? If so, how many?
- The spread (metastasis) to distant sites (M): Has the cancer spread to distant organs such as the lungs or liver?
- Estrogen Receptor (ER) status: Does the cancer have the protein called an estrogen receptor?
- Progesterone Receptor (PR) status: Does the cancer have the protein called a progesterone receptor?
- Her2/neu (Her2) status: Does the cancer make too much of a protein called Her2?
- Grade of the cancer (G): How much do the cancer cells look like normal cells?
(taken from cancer.org)
CAN BREAST CANCER SURVIVORS BREASTFEED?
Happily, research indicates that most breast cancer survivors can breastfeed – albeit with a little help. Whether you’ll be able to breastfeed successfully depends on the sort of treatment you have received. Mothers with lumpectomies that have preserved as much ductal tissue as possible may be able to produce some milk from the affected breast. Mothers who have had single mastectomies can most likely produce milk from the remaining breast. By nursing and pumping frequently (things that any mother would have to do to build supply), and with the support of family and a lactation expert, most breast cancer survivors can breastfeed successfully.
Studies show that the highest chance of success is attained when breast cancer survivors receive help from IBCLCs as soon after birth as possible. This ensures that both baby and mother are properly supported through their breastfeeding journey, which may be a little different from most, but achieves the same amazing goals. Don’t be discouraged if your milk supply is not enough for exclusive breastfeeding. You can also consider donor milk, as Li P’ing did, and use a supplemental nursing system (SNS) to feed your child at the breast.
By BMSG Editorial Team
While breast pumps might be a no-brainer purchase for working mothers when they return to work, for others, hand-expressing appears to be an easier option. We speak to three breastfeeding mothers, who are also our breastfeeding counsellors, who hand-express at work and on-the-go, doing away with the conventional breast pump.
CL Chan, a junior doctor, rushes to a toilet cubicle at the hospital she works in. She is on call and is anticipating a beep from the hospital at any time. CL, who is still breastfeeding her youngest baby, flips open a clean milk bottle and starts hand-expressing her milk. In just under ten minutes, she has a bottle filled with breast milk, which makes up one of the next day’s feeds for her baby.
For CL, a mother of three, working in a pressure-cooker environment compelled her to pick up hand-expressing as a skill. “For my first and second babies, I relied on my portable double pump, but often had difficulty finding a clean, private spot to set up my gear, put on my pump bra and start pumping,” CL added.
CL also found it cumbersome to bring along her pump with her on her rounds. “There was the added stress of dragging the pump, cooler bag and flanges around with me as I moved from ward to ward.” Feeling frustrated at having to cut short her pumping session many times due to the hectic and sudden nature of her job, CL chose to hand-express out of necessity.
Convenience of hand-expressing a Strong Motivation
For Jasmine Tan, 35, being an exclusively-pumping mother for her second child triggered much exhaustion. It was her first day back at work, lugging her heavy breast pump and work bag despite on a part-time contract, that forced her to look for other options. It was not until later on, during a three-week holiday, that she decided enough was enough and figuratively threw out her breast pump in frustration.
“I didn’t want to always be stuck in the nursing room while on holiday, always having to worry about milk storage and warming it up,” said the corporate relations manager, whose baby had poor milk transfer while latching, due to a tongue tie.
As she got better at hand-expressing during the vacation, she began to realise that the convenience was the best motivation for her. “Gaining mastery at hand-expressing just before a baby’s feed did it for me; no washing, sterilising, pumping, storing, or warming was required. It was the best alternative to my baby to direct latching,” she added.
Jasmine was also the only lactating mother at work and there was no nursing room at her workplace. She also had to travel frequently for work, giving her the extra push to rely on hand-expressing especially when time was tight. Jasmine also frequently thought about how mothers coped in the past. “I was always thinking what the last few generations of mothers would have done in my situation. With no pumps back then, hand-expressing came to mind,” Jasmine said.
Correct Technique Key to Maximum Output
For the uninitiated, hand-expressing may sound cumbersome. Some mothers who have attempted it may also complain of poor output the first few times. But according to Nur Hafizah Rafie, who hand-expressed her breast milk for her two children for almost four years, it helped her produce more than when she was using a breast pump.
The family researcher, who was working in an office setting previously, experimented with multiple breast pumps. From electric to manual pumps, and even single and double pumps, Hafizah found that her output from hand-expression trumped what she got when using pumps. “It took me a longer time to have a good output,” she said, adding that she got better at hand-expressing from practicing.
Hafizah has grown so adept at hand-expressing that she would complete two of her three hand-expressing sessions at her desk instead of the nursing room. This also saves her time at work. “I hand-express at my desk with just a nursing cover,” she added.
Jasmine, who did not hand-express for her first child, understands that the first few tries might be difficult especially for one who has just started out. But like the other mothers, she found practice makes perfect. “No doubt, it was at first tiring for the hands and my breasts were bruised in the initial stages as I was trying too hard. But after hand-expressing eight to ten feeds a day, over weeks and months, it just became second nature,” said Jasmine.
For CL, watching a video from Stanford University won her over to hand-expressing. “It was life-changing for me. Using their technique of placing your fingers, pushing back into the chest wall then rolling forward, hand-expression is virtually painless!”
Indeed, successful hand-expressing requires the right technique and pressure, and is often a chosen way to help new mothers provide colostrum and breast milk to newborns at the hospital. While we are inclined to assume that lots of hard pressing is required to extract milk from the breasts, it is actually the exact opposite. According to the World Health Organization (WHO), hand-expressing should be painless and comfortable. There should be no rubbing or sliding fingers along the skin, and the nipples should not be pinched. It is also recommended to switch sides a few times during each hand-expressing session until milk flow is slow from the start.
Triggering a Letdown
Similar to using a breast pump, the key to producing enough for a feed when hand-expressing is to trigger a letdown. A letdown occurs when the brain receives the necessary stimulation from the breasts to open the floodgates to express breast milk out from the milk glands in the breasts. This is always more successful when the environment and stimulation at the breast are when mothers are at their most comfortable.
For Hafizah, being relaxed is helpful. “I will make sure my chair is comfortable by using a good cushion to support my back. I drink a hot drink before I begin and then massage my breasts to prepare for hand-expressing. I also place a warm compress on my breasts to help trigger a letdown,” she said.
Fear and anxiety may hinder a letdown, so Hafizah also sometimes watches a drama while hand-expressing to keep her mind off how much milk she is making. “The thing with hand-expressing is that you can do other things like watching television without looking at the bottle. By not looking at the bottle, it prevents me from thinking about how much output I should get in one session. When I was still using a pump, I kept staring and checking the bottle to see if I have gotten enough for the session. It somehow added more stress for me instead,” said Hafizah.
Finding a comfortable spot is a proven challenge for CL as she is always on the move in the hospital. But viewing videos of her baby given to her from home helps her to achieve a letdown when she is able to get a bit more time to sit down and hand-express. “I also found being gentle and rhythmic in the initial part of a session, even if you don’t yield a significant amount, helped stimulate a letdown much like the massage mode on a pump. Once you achieve a letdown, then not much work is needed to extract the milk. Switching sides two to three times per session also helped increase my yield,” said CL.
Not a Popular Choice, Yet These Mums Won’t Choose Otherwise
All three mothers concur that people’s reactions to them hand-expressing were always one of shock and disbelief. “Many people will go on to share their extremely painful or bruising experience with hand-expressing, or comment about how tired your hands must be. But as I mentioned earlier, with the right technique to trigger a letdown, no “force” is needed to squeeze the milk out,” CL said. “Some people are just shocked. I guess it is something that my body is used to and it is faster and fuss-free for me because all I need is just a bottle and a milk storage bag,” chips Hafizah. Jasmine agrees, too, that it was not easy to begin with but became easier as time went by. “The pros definitely outweigh the cons,” she added.
Tips for Comfortable hand-expressing
(adapted from the WHO Publication Infant and Young Child Feeding – Model Chapter for textbooks):
The mother should:
- Have a clean, dry, wide-necked container for the expressed breast milk;
- Wash her hands thoroughly;
- Sit or stand comfortably and hold the container under her nipple and areola;
- Put her thumb on top of her breast and her first finger on the underside of her breast so that they are opposite each other about 4 cms from the tip of the nipple;
- Compress and release her breast between her finger and thumb a few times. If milk does not appear, re-position her thumb and finger a little closer or further away from the nipple and compress and release a number of times as before. This should not hurt – if it hurts, the technique is wrong. At first no milk may come, but after compressing a few times, milk starts to drip out. It may flow in streams if the oxytocin reflex is active;
- Compress and release all the way around her breast, with her finger and thumb the same distance from the nipple;
- Express each breast until the milk drips slowly;
- Repeat expressing from each breast 5 to 6 times;
- Stop expressing when milk drips slowly from the start of compression, and does not flow;
- Avoid rubbing or sliding her fingers along the skin;
- Avoid squeezing or pinching the nipple itself.
Mothers may also want to massage their breasts, stimulate their nipple, or get someone else to massage their back in order to stimulate the oxytocin reflex to kickstart a letdown.
By Saidatunnajat Yusuf, BMSG Counsellor
I breastfed my baby for almost 3 years. When I got pregnant, I knew that breastfeeding was the only way to go. Even though I was a first-time mother, I was one of the lucky ones who had a smooth sailing start to breastfeeding. I had a good support system, and most importantly, I followed my instincts and listened to my baby and body. I did not question my supply – as long as he was drinking happily, I knew that everything was okay. As a stay-at-home mom, breastfeeding got even easier as Nuraz grew older. He was an expert latcher, and I was happy to offer the breast anytime to instantly calm a fussy, cranky baby.
As good as it might have seemed, things took a different turn when my baby became a toddler, and I knew that one day, these wonderful breastfeeding days would come to an end. I was gradually getting more tired and I increasingly felt that I wanted my space and body back, but I persevered, because I knew that my baby still needed me.
I had people (especially my mother-in-law) telling me how skinny my baby was because he was not eating well, and that I needed to give him some sort of calcium or alternative source of milk so that he would put on weight. As such, I doubted myself a lot. Visits to my MIL’s place were always stressful, as she would make me feed any sort of milk from a bottle; “he needs his milk after every meal” she would say. There was also this expectation for me to provide a certain amount of milk on a daily basis just to meet his daily milk intake. I tolerated the comments, breathed in and out, and just trusted myself as the mother of my own child. I had to believe in myself, and trust that what I was doing for my child was right. I gave myself numerous pep talks so that the negativity would not cloud my beliefs and principles. I told myself that it was okay to continue nursing my toddler. I would wean him when the time was right. I was at no liberty to wean him just because someone told me to, or because he was naturally skinny. The time would come, and I would do it when we were both ready.
I set a target to close the doors on my breastfeeding journey when he turned two years old. However, it wasn’t easy as it seemed. When Nuraz turned 2, I also decided to go back to work, and my husband and I sourced for a daycare to care for Nuraz for the five hours each day that I would be at work. I took this opportunity to slowly cut down our nursing sessions. A plan is just a plan, so how did it work out? Well, it was a long 10-month process!
He doesn’t tell me that he misses breastfeeding, but I know that he misses our late night nursing sessions – just like me.
Nuraz was one of those babies who depended only on the breast to put him to sleep. As such, I would have to lie in bed with him every nap time and evening just so that he could sleep. I knew it was normal behavior, but I questioned myself so many times. Was I spoiling my child? It was such a concern when I put him in daycare. I questioned the caregivers every single day on whether Nuraz had been able to sleep and how long he hadslept for. We did also attempt to try to put formula into a bottle for the caregiver to give to him, something I regret. We thought that perhaps if he saw his other classmates having the bottle and sleeping he would follow suit. But my kid knew that nothing other than mother’s milk was going to soothe and comfort him. At two years of age he was still such a picky eater – a phase that we have luckily escaped from. Nuraz did not take any other form of milk – fresh, powdered, strawberry, chocolate, anything – it was really tough because I was concerned that he was not getting enough nutrients from his small intake of solids. Subconsciously however, perhaps I did not really try very hard with solids because I still believed that he was thriving well with whatever I was providing him through my milk.
Cutting down nursing sessions were hard. Firstly, I cut down on nursing sessions by ensuring that we kept ourselves busy. Often, when Nuraz saw me idling, he would want to nurse knowing that his mother’s breasts were available! As such, I would always find something to do and made myself busy, so he would know that the breasts were busy too. We went out a lot too so that he would be occupied running around.
The nursing sessions before nap or bedtime were the hardest to drop. I still nursed him, but I would cut it short. And whenever I realized that he had fallen into a deep sleep, I would quickly unlatch him and leave him to sleep alone – well, until I joined him for bed in the night. As much as I wanted to nap beside him, I knew that this would just give him easy access to my breasts. On nights when I just did not feel like nursing Nuraz to sleep, my husband would take over to tackle the situation. It was heartbreaking, as Nuraz would cry out for me as he did not want his daddy to put him to sleep. He wanted me, and he wanted to nurse. What my husband and I did was to set a timer for 5 to 10 minutes, and if all else failed, I would relent and go in to nurse him to sleep. Sometimes it worked, sometimes it did not – so we played by ear. Still, Nuraz would always find his way back to the breasts in the middle of the night and help himself to the feed. I started wearing really tight unaccessible clothing to bed. Our nursing sessions got shorter and shorter, and there were times when I woke up in the morning, realising that my clothing was still intact and that he had not nursed at all. And then one fine afternoon on October 2016, Nuraz took his last nursing session, and that was that.
My son is turning five soon, and it has been exactly two years since he took his last feed from me. We had a good run together, and I am happy to say that he is thriving on all kinds of solids. Nuraz, although independent, can be clingy and insecure. Sometimes, I wonder if it is an only child syndrome, or if it is because I breastfed him for so long. It becomes very difficult to get others (even other family members) to care for him when I need to run errands or just have some “me time”. He doesn’t tell me that he misses breastfeeding, but I know that he misses our late night nursing sessions – just like me.