I was diagnosed with breast cancer aged 29, a lot younger than the typical breast cancer patient. Luckily, my family’s history with breast cancer had made me very proactive about screening, so I found the tumour early. Nonetheless I needed surgery, chemotherapy, radiotherapy and hormone therapy.
I remember asking my surgeon if the lumpectomy surgery (removing just the tumour and surrounding areas rather than the whole breast) would prevent me from breastfeeding. I was told that the surgery wouldn’t, but that the subsequent radiotherapy treatment would probably “kill” the mammary glands in my left breast. Fortunately, my right breast was clear from cancer and wouldn’t need any radiation: I could nurse from one side.
Two years after the end of the radiotherapy, I got the go-ahead from my care team to pause hormone therapy and try to get pregnant. Fortunately, I was able to conceive without any issues after chemotherapy, so my next concern was how nursing would go with just one side to offer. I started searching online for other experiences, and I didn’t find much. It would have been very reassuring to know that someone in the same situation had managed well.
I read somewhere that sometimes the breast can produce a little milk even after radiotherapy. I patiently watched for breast changes during pregnancy but my left side did not develop in the same way as my right side. At 20 weeks, my right side was significantly larger than my left. The breast changes were reassuring but also created some anxiety. Pregnancy meant I had to skip my annual screening and I couldn’t always keep from thinking that normal lumps and swelling could be cancer.
Halfway through the pregnancy, my obstetric consultant told me that colostrum harvesting can be helpful when babies need extra support.
I had no reason to believe my baby might need additional help, but I liked the idea of seeing and collecting some milk before needing to feed my baby, so I tried. As expected, my cancer side was dry and nothing would come out of it, but I collected eight one-millilitre syringes of colostrum from my right side. In the end, our baby didn’t need the extra support or colostrum, but I offered the syringes between feeds during the first two days. I don’t know if that had any real impact, but it gave me peace of mind and more confidence.
I was happy when my milk came in on the third day, but soon after realised our latch was not right. My nipple developed a red line which then turned black, peeled and made my nipple raw and painful. That changed everything, I was still breastfeeding what felt like constantly, but felt close to quitting because of the pain. I was asking for and getting help from all the midwives we saw early on, but nothing they recommended worked.
Most said our latch looked good and deep – the injury was the only indication that it wasn’t. In the end, what saved our breastfeeding relationship was using a nipple shield. Using the nipple shield diminished the pain, allowed my nipple to heal, and I could see the milk collecting and even leaking loads when my baby was unlatching. I was relieved that I didn’t have to feel that much pain and that I could see my baby getting what she needed. The downside was that it brought a few negative comments from midwives visiting, claiming it would stop me from providing my baby with enough milk. That was worrying me, so I continued to look for help.
I joined an LLL support group feeling inadequate, but I was quickly validated when one of the Leaders told me about how some other mothers temporarily use a nipple shield with their babies. That allowed me to relax a little – there are enough things to stress about at the newborn stage. When my baby was around two months, I was finally referred to a nursing specialist at the hospital, and we managed a good latch using the “koala hold” (my baby upright with her legs wrapped around me). I was glad to retire the nipple shields. Initially only during the day, as my baby would go back to old habits when sleepy or in a different position. But by three months, we were free from nipple shields, and my baby could latch in any position or at any alertness level.
Another thing that worked well for us, which I believe must have helped with breastfeeding, was close contact with babywearing and skin-to-skin contact. My baby loved being on me for the first few months, and I decided to embrace that. I carried her around in slings and carriers most of the day. Nighttime was the most challenging part and we decided to co-sleep, so we had to learn how to do so safely. I never thought I could bedshare with my baby because I used to be a very active and deep sleeper. To my surprise, side-lying with my baby feeding overnight gave me the best night’s sleep we had, until she was ready to sleep on her next to me cot at nearly four months.
Our final challenge was introducing a bottle. I knew I would need to go back on hormone therapy (which, unfortunately, is not compatible with breastfeeding) before my baby was one year, so I tried to offer bottles with my pumped milk at various points. Our attempts were disastrous. At one point, I had five different brands of bottles at home because of the usual advice that the bottle teat might be the issue. I worried that weaning would be traumatic for us. I even considered getting a nursing supplementer to use with formula on my “bad” side. But someone in my LLL group rightly pointed out the risk that the stimulation might make my breast produce milk which would be contaminated with the cancer medication.
My baby was nine months when we had to stop, and to my surprise, she took the bottle with no protest. All I did was embrace and cuddle her like I did when nursing – same side and position. Maybe she was just old enough to accept a bottle then, or I was not adding enough cuddles before. Overall, I am grateful the weaning was trauma-free and happy we made it to nine months. It would have been nice to continue for longer, but I also feel accomplished.
My little girl grew well and stayed on and passed her birth-weight percentile with no need for formula until we stopped. I think that alone is something not even my partner believed would happen in my situation. He recently told me that early on, when we struggled with the latch, he had searched online and found a scientific article about a study where none of the participants managed to nurse exclusively for six months after breast cancer. I’m glad he didn’t share that with me at the time, as it might have shaken my confidence.
In terms of my cancer risk, I feel good. Nursing should be protective, and I only got my period a month after we stopped, a sign that my oestrogen levels (harmful for my type of cancer) have been low because of breastfeeding. I plan on having another baby and breastfeeding again, but this time without pumping or introducing a bottle before it’s necessary. When my family is complete, I will have a double mastectomy.
Diagnosis does not mean you need to give up on nursing. I am pleased I could breastfeed and add some positive history to that area of my body after the trauma. I am also over the moon that I was able to inspire my sister, who recently had a baby (and had also had breast cancer). I cried when she told me that the first days were hard, but she did it because of my support and example. She also needed to use a nipple shield for the first few weeks. I hope our story can reassure and give confidence to more new mothers, or those who aspire to be mothers, after breast cancer.
By Simone Pemp, LLL Notting Hill & Stoke Newington