Translated from the original Italian version by Carla Scarsi – Genoa, Italy
This is the story of a mother who – like many others who contact La Leche League (LLL) – had the courage to deal with difficult choices.
Choices that can be tricky to make, as having a tumor puts you in such an intense and devastating psychological condition which, if not experienced personally, can trigger reactions hard to fully understand.
Carla, a La Leche League Leader in Genoa, Italy, has gathered the emotions and fears of this mother who wanted to breastfeed her children for as long as they needed it, even after breast surgery, despite the adverse opinion of a few doctors she met on her path to recovery.
La Leche League Leaders, with their listening skills, offered her support for many months, also when she changed continent and moved from Europe to South America.
Luckily, with WhatsApp at hand these days, you no longer need to book ahead to make phone calls using a submarine cable, as it was the case in the 1950s.
Carla and Valentina have now become friends, and they have laughed and cried together while writing this interview for the readers of Breastfeeding Today.
Dear Valentina, what was your first reaction when you were diagnosed with breast cancer?
When I was diagnosed with breast cancer, my first thought was about my compromised motherhood, not about my own life. I couldn’t stop thinking about the baby I may never have. This was the hardest thing to accept. I had just gotten married; I was 37 at that time, already considered too “old” to try to have a baby. My husband and I wanted a baby so much. They talked about a possible surgery and subsequent therapies, possibly chemo and definitely radiotherapy. All my projects vanished in one second. Needless to say, I was in anguish. After months of tests and two fine needle aspiration biopsies, they confirmed it was a 2.5 cm malignant tumor. It was located beneath my nipple, slightly off center. Its scientific definition was “Infiltrating ductal carcinoma of the right breast with a histological grade between 2 and 3”.
The first thing I was told when the ultrasounds and mammograms showed I had cancer, before it got confirmed by the fine needle aspiration biopsies, was: “If you’re planning to have a baby, this is not the right time. Now you have to focus on getting well.”
In Italy, I consulted several oncologists, who were all very positive about my recovery, even if it was an invasive type of breast cancer. My main concern was that I wouldn’t be able to become a mother, because of my age and the duration of the treatments I would have undergone. No babies, no breastfeeding.
And for me breastfeeding meant motherhood.
How was the journey leading to the surgery?
In Italy, the doctors assumed they would remove not only the right breast – the affected one – but also the healthy one, as a precaution. The risk of relapse was high with this kind of tumor, due to family and genetic predisposition. That was the time when Angelina Jolie decided to remove both her breasts “as a precaution” and the story received a lot of attention.
I consulted two Italian oncologists – in Naples and Milan – who agreed on the need to perform this invasive surgery, but I couldn’t accept the fact that there was no possible alternative.
At that time I was living in Barcelona and I went on to consult a very good Catalan oncologist who told me that the nipple from the affected breast would probably need to be removed and that I should give up on the idea of having a baby and breastfeeding, as the treatments could last five to ten years. The advice to accept that the cancerous breast needed surgery was endorsed by all. Some doctors pointed out that I could even breastfeed from one breast only, but that it all depended on the therapy I would have to face, on whether or not I would undergo chemotherapy.
I eventually chose a second doctor, at the Hospital Clínic in Barcelona, who was the only one who told me: “I’ll do everything I can to save your breast and try to preserve your ability to breastfeed”. For the first time, I finally felt heard and understood. At the Hospital Clínic, I witnessed a special attention for and a great sensitivity towards motherhood. I spent a lot of time in the hallways of the hospital, waiting to be tested and to get the results of the analysis of my metastases. I met other women who confirmed that all the physicians were focused on protecting future motherhood and were deeply respectful towards their patients, already so affected by the disease.
Healthcare overall is a matter of great importance in Italy, but there is definitely less awareness about breastfeeding.
Let’s talk about the surgery.
In January 2014 I finally had my surgery. The physicians hadn’t known yet whether the tumor had already entered the bloodstream through the lymph nodes – in fact, during the operation they also removed two sentinel lymph nodes under my armpit. Before entering the operating room, they weren’t able to tell me if they would be able to save my nipple, if they would have to remove the entire breast or just a portion of it. Just before I fell asleep, with the oxygen mask already on, I asked: “Please, save my nipple, as I want to breastfeed”.
I was in surgery for six hours, but it paid off because they were able to save my nipple. They removed it, extracted the tumor, cleaned the affected part, took out the axillary lymph nodes and reattached the nipple. I suppose, since the tumor was not central but slightly offset, they probably managed to save the vascularization of the least affected part. I woke up with half a breast gone.
My oncologist immediately reassured me that during the surgery they had seen positive signs that the situation would normalize. There probably wouldn’t be any trouble breastfeeding, although my supply might be affected by the reduction in mammary tissue.
Already then, I was told about La Leche League, an organization which would be able to support me with breastfeeding. At that moment I had other important things on my mind, other issues had to take priority. I wanted to freeze my eggs while waiting for post-op therapy. Unfortunately, my ovarian reserves were low and I would have had to undergo hormonal stimulation to get pregnant, which oncologists strongly discouraged. They were all worried about me, especially my husband and my family. It was a tumor that fed on estrogen, the essential component of hormonal therapy to get pregnant. It would have been really dangerous for me.
Which treatments did you have to undergo?
Thankfully, the cancer was limited to the breast area, so I didn’t have to go through chemo. In Italy, the physicians strongly recommended it as a preventative measure, while in Barcelona they did not. They proposed a month of radiotherapy plus five years – and possibly five more – of hormonal therapy, which would have definitely compromised my fertility. I couldn’t freeze my eggs, as I had an insufficient number. The advice was to undergo the first five years of hormonal therapy and then try to get pregnant.
There began my second battle. In the meantime, I had moved to Quito, in Ecuador. My quarterly check-ups soon became semi-annual. The oncologists were very optimistic and reassured me that a relapse was most unlikely. They told me: “It’s up to you. Getting pregnant might put you at risk, but we’re aware it’s your choice”.
I decided to undergo just one year of post-tumor hormonal therapy. Once it was complete, I had to wait several months to allow my body to detoxify from the medication. Finally, I could start trying to get pregnant. After a few months without results, I went back to Barcelona and went to a fertility center there. I was treated by a team of specialized doctors including some oncologists, for a brief hormone stimulation treatment. Eventually, I ended up resorting to in vitro fertilization, which had to succeed at the first try. Fortunately, it worked and I got pregnant! I had two eggs implanted and both of them made it through. Two incredible little boys were born, Lorenzo and Alessandro. They are amazing, but they can be such cheeky monkeys! (She laughs).
How was your childbirth experience?
I gave birth in Italy, at the Hospital Federico II in Naples. During pregnancy, I was carefully monitored every 15 days. These constant check-ups were necessary both to make sure that any relapses were detected immediately and to ensure the pregnancy proceeded well, as it was a twin pregnancy after in vitro fertilization. I obviously wanted a natural birth, but I had to have a C-section. Sadly, when my babies were born, hospital protocol prevented them from staying with me. They just showed me my babies, gave me one of them for a quick kiss on the cheek and that was it. I was hoping they’d let me hold them, at least for a few minutes. Instead, I had to wait until the next day. I felt incredibly emotional as I hugged Alessandro, while Lorenzo had to stay in the incubator for eight days due to an infection. I already knew I would have to give them some formula. I thought I would probably only have one breast for two babies.
The next day, when they brought me Alessandro, the first thing I did was to latch him on the affected breast. I wanted to know if it would work.
It hurt terribly, and no one had prepared me for this pain. Nobody had explained to me how to take care of the breast they had operated on or, more generally, how to breastfeed. The nipple skin of the affected breast was very delicate and definitely more sensitive than the other one, due to radiotherapy, and it was expected that I might have problems with irritation and redness. The milk ducts had evidently “suffered” from the operation and this made the milk flow with more difficulty and pain.
My baby was sucking intensely and I started shaking from the pain. My mother, who was next to me, helped me so much. I myself am an identical twin, so she understood how difficult it would be to feed two children at the same time. (We both get emotional – Carla’s comment).
Once he finished sucking at the affected breast, I offered him the other one. I also felt pain, although less. In the afternoon a midwife came to check on us; she was very nice and sensitive. I told her I wasn’t sure if any milk was coming out of the treated breast. She asked me if I wanted to check. She compressed my breasts; it hurt, but a gush of yellow colostrum came out even from the affected breast! It was mine; I couldn’t believe it! Thanks to her, and to La Leche League Leaders, I learned how to manage feedings and to help my babies to latch effectively, so that the pain slowly started to decrease, until it disappeared after about a month.
I stayed in the hospital for a week and for the first days I wasn’t able to see baby Lorenzo, who was in the incubator. The hospital staff brought me formula bottles for Alessandro, who was with me, but I insisted on breastfeeding him.
After four days, they allowed me to see Lorenzo. Finally, with immense emotion and joy, I could hold him too! He still had all the IV tubes attached to his feet and hands; he was so skinny. He also sucked at the treated breast. It was the most beautiful thing in the world. At first, he was confused, he had probably become used to bottle feeding. But when he realized that he was breastfeeding, he was happy, and I felt incredibly emotional. (We both get emotional, again – Carla’s comment).
What information on breastfeeding had you been given at that point?
It was May 2017. Before leaving the hospital, I spoke with a very scrupulous pediatrician, who had very rigid views on breastfeeding. According to the strict schedule he gave me, I was supposed to breastfeed my babies every three hours. I even set an alarm on my phone so I wouldn’t miss feeds. So, I tried, but my poor children didn’t always want to feed at that specific time. A few days later, they started to refuse the treated breast. My babies seemed to prefer the bottle to the breast and I was afraid that breastfeeding may already be compromised. I was resigned to not being able to produce enough milk, I didn’t know yet about the possibility of offering my milk in a different way. I started trying to increase my supply, and that’s when finally, thanks to a dear friend, a mother at her first experience just like me, I contacted La Leche League.
Marina, a La Leche League Leader from Naples, supported me a lot. She told me about breast compressions, which I could use to increase the milk flow while my babies were sucking. Then, I also called my pediatrician in Catanzaro – the same one I had when I was little – and he told me: “Listen to me. Offer them your breast every time they ask for it. And even when they start eating complementary foods, if they want the boob, give it to them!”.
After four months, Lorenzo, whom I had breastfed with a homemade nursing supplementer, weaned himself. I continued to breastfeed Alessandro. I had lost weight and I was tired; everyone advised me not to continue breastfeeding. I was also very embittered, because everyone around me would say: “Resume your hormonal therapy, you’ve done your duty and it’s fine”. At that time, I saw an Italian gynecologist, who prescribed me some medication to suppress milk supply. My babies were only five months. I had no intention of taking it.
And then what happened?
I was afraid that my breastfeeding journey was about to end. But Marina, and then you Carla, encouraged me so much. You helped me a lot with your emails. I got emotional every time you wrote to me! You told me how to hold the bottle in a horizontal position so that Lorenzo would need to suck actively to get the milk, as he used to at the breast. Above all, you explained to me that breastfeeding was also a relationship between mother and child and that this exchange went beyond milk supply. I never thought about these things before you told me, and it made all the difference for me. Lorenzo was so happy when we discovered the nursing supplementer. At the beginning, he was a little bit confused, but when he felt the milk flowing “from the breast”, he was so thrilled!
Although it was a struggle, I kept expressing my milk for two years, three times a day, also to maintain milk supply in the affected breast, as Alessandro didn’t willingly latch onto it. I would give the expressed milk to Lorenzo. That helped to make up for the “lack” of breast and to continue feeding him with my milk. Besides, stimulating the affected breast meant increasing the “good hormones” that could protect it from any possible relapse of the disease. This was explained to me by the doctors, and it reassured me.
In the meantime, I never stopped working. I went back and forth from university, with my pump and my milk. Here in Ecuador, great attention is given to breastfeeding. I have never felt criticized, rather they have always encouraged me a lot. When my babies were one year old, they started going to daycare. There was always a chair available for me to breastfeed Alessandro, before and after daycare.
In Ecuador, you can see a lot of breastfeeding advertising on the streets, and on TV they are constantly showing promotional videos that encourage and support breastfeeding until the age of two. Instead in Italy, they used to tell me: “They have teeth, they have to wean” or “They eat solid food, they have to wean”.
How did it end?
It’s not over yet!! (She laughs). When my babies were two, I came to Italy for the holidays, and just then I decided to leave behind (in tears) my breast pump. I gave Lorenzo a bottle of my milk for the last time. While I watched him suckle, he said “Mommy, milk”!
Soon after, even here in Ecuador, they started suggesting that I should wean Alessandro. Instead, he carried on nursing for another year. Now that he is three, sometimes he still asks for it, even though I no longer offer it to him. We’re experiencing a gentle weaning.
If it wasn’t for you, I wouldn’t have achieved this. If I had listened to the advice of the other people around me, I would have given up at four/five months. Thanks to all of you, I was able to experience natural-term weaning. I will always be grateful.
Besides sharing your story with us, is there anything you would like to tell other mothers?
My mother once said to me: “In these situations, don’t pay any attention to criticism, but think with your own head and your maternal instinct, because moms are almost always right”.
I think this is the best advice. (And, obviously, we both get emotional again).
Alessandro and Lorenzo have just come back home with their father, who took them outside to let us have this interview, half of it conducted via Zoom and half via WhatsApp. Here they are!
Carla Scarsi has been a La Leche League Leader in Genoa, Italy, since 2001 and a journalist, since 1988. She is a member of the LLL Italian Area Council as the Public Relations Coordinator and collaborates with the La Leche League International Social Media Committee. Mother of two wonderful young women and a sweet baby boy who would be 22 years old today.