What it feels like to lose a breast without cancer

After finding three benign lumps, Deirdre Naughton had her breast removed. She is wondering if anyone else shares her experience.

Emma Jones 9 minute read July 5, 2021

Dee chose to have her breast removed after doctors found benign tumours. SUPPLIED Supplied

Deirdre Naughton had only recently found out she was pregnant with her first child at 34 when she noticed one of her breasts had begun to produce what looked like colostrum, or the first form of milk that is typically produced in later stages of pregnancy. As her pregnancy progressed, she noticed other symptoms like sharp pain and blood, all in the same breast.

Once she had given birth, doctors told her that they had found a lump in her breast that had to be removed. It wasn’t cancerous, although these lumps would reappear at her next pregnancy, and then again a little while later.

Papillomas are non-cancerous tumours that can grow in various areas throughout the body. When they appear in the breast, they may also cause symptoms such as pain and bloody or clear discharge from the nipple. Although they are benign, when they occur in the breast papillomas, they are connected to a higher risk of breast cancer.

Three lumpectomies later, Deirdre made the difficult decision to have her breast removed. Although the lumps were not cancerous, there was no guarantee that it would remain this way. Deirdre spoke to Healthing.ca about what it took to come to terms with this choice.

This interview has been edited for length and clarity

When did you first start to notice something was off?
I remember the day I found out I got pregnant; we flew to London, because my husband had work there and I was so excited. I was going around London buying pregnancy books and going into boutiques.

There’s something that comes later on in the pregnancy, it’s called colostrum or “liquid gold,” that’s like barely milk. I assumed  it was colostrum, maybe it was discharge, but it was already being produced by my body. I was going to medics who would tell me that breasts go through a lot of changes [during pregnancy], but this was very unusual.

In the autumn of my pregnancy, I remember waking up in the night with this sharp, intense pain in my right breast. It was so sharp, it woke me and I bolted up. I went back to sleep, and that level of pain never came again. Then on St. Stephen’s day — that’s what we call the day after Christmas — I woke up and there were little dots of blood on my top and on the duvet. I called the hospital and they told me to come in after [the holiday].

The [doctors] would tell me, ‘You know, your breast changes. You’re fine.” My son was born in April, then they discovered [a lump] and said I would need surgery.

What was that like? You have a newborn and then you need surgery to get a lump removed.
I was actually fine about it, in a blasé way. Because I knew no difference. I was told it was benign and I thought it would just pop out and I would sail away into the sunset. And I did.

Then I got pregnant again. I [didn’t have any symptoms] — I was just pregnant and busy with a toddler at home. The night I gave birth [to my second child], the nurse recognized me from the time of the first pregnancy and she said ‘Oh, you’re the girl with the funny boobs.’ [laughs]

For my second pregnancy, there were no red flags; I thought it was fine. I never even thought about papilloma. But when that nurse examined me, she found a second lump. That hit me really hard.

I was mad to breastfeed, but I was only able to feed from one breast. And because I was getting ready for surgery, I needed my breast clear of milk, except that breastfeeding creates milk in both boobs. This caused some friction at the hospital — the breast-feeding people really wanted [me to do it], but one of the doctors wanted me to stop. I carried on for a week after and it was lovely and I got that special time with my first son, but in the end, I did stop. In the spring, and I got [the second lump] out. And [the doctors] were like, ‘It’s papilloma. It’s fine. Sail away.’

When did you start thinking about having your breast removed?
I noticed spots on my shirt one morning getting the children ready and I wasn’t pregnant this time. I was running out of breast tissue, you know, because they were excising so much.

The third time, I knew I was in trouble. I wondered, ‘Is this serious? Is this papilloma? Or is this cancer?’ It was the summer, I was in the west of Ireland, which is where I’m originally from. I live on the East Coast of Ireland now. So I was at home and it was just so relaxing over there; I was in holiday mode with a lovely new baby and I though, ‘this is not getting into my summer.’ I had given so much of  my time to these lumpectomies, I told myself, No, this is my time.’ Which probably wasn’t very wise, but that’s where my mind was at.

When I went [to the doctor] in September, I already knew what he was going to say; it wasn’t that hard to join the dots. I had a third lumpectomy and had some pain afterwards. Although the doctor thought that it could have been scar tissue, an MRI found five more little papillomas.

I’m very embarrassed to say this now, but I didn’t make the decision to remove my breast. I needed time and I feel like I frustrated people around me who were obviously naturally very concerned about me. My mom’s a medic, and her attitude was, ‘There’s no malignancy, so just sit tight,’ you know? But my husband felt differently. He was worried that things could change.

It became like a political debate. One side was saying, ‘Do it. Do it. Do it. Do it,’ While the other side was saying, ‘Well, it’s not malignant. You don’t look sick.’

It must have been difficult to even consider.
I suppose I had come to a place where there is no right or wrong. It was an unusual predicament to be in and now I can kind of reflect on it. There was no road map, no formula, no support group.

I did read a lot of cancer literature, but I didn’t want to insult those guys by calling them up, I wanted to be sensitive. But you know, when you have a mastectomy, it’s a loss regardless, isn’t it? It’s a massive loss.

What was it like to lose your breast?

I was lucky in that I could have a direct implant (breast reconstruction). [I couldn’t imagine] waking up and having a flat chest — it must be so hard for women. I had the implant — which felt different, there was no fat in it — and then three months later, I had fat tissue moved from my tummy to my breast area. It’s not like going and getting your hair done. The sad bit was that because I had three lumpectomies around nipple area, I also lost my nipple. The plastic surgeon said right off the bat that she couldn’t save it — I found that very hard news to take. But soon after, I got a nipple transfer, and soon, I will be getting a tattoo.

It’s done now — I did what I needed to do. I hold no blame or regret or anything like that, because it was just the way the cards fell for me in my body.

Editor’s note:  Depending on the location of the papilloma and the extent of the mastectomy, the nipple may be removed during surgery. If the patient also decides to undergo breast reconstruction (ie. Implant, fat transfer, etc.) they may also choose to have the nipple reconstructed. In this procedure, typically the skin around the centre of the breast will be gathered and shaped to look like a nipple, although skin grafts and nipple implants may also be used. Tattooing can be used to recreate the colour of the original nipple and areola (the dark area around the nipple). Some patients may also choose to forego nipple reconstruction and instead have a tattoo that recreate the appearance of a three dimensional nipple.

Has it been difficult to cope with the changes in your body?
I think the hardest bit was the morning of the mastectomy, when a young student doctor came in and he was just doing [his job] — he’s there with the measuring tape and I wanted to fold up. I remember thinking, ‘I can’t do this this, this is too much.’

It was about two or three days later, maybe even on the second day, I put my hand down [to my breast and] and said out loud, ‘Can you give it back?’ I got very tearful. Granted, I was on a lot of pain medication This lovely Canadian doctor came in and she sat down and said, ‘I hear you’re having a tough time of it.’ But then she said, ‘I’ve operated on so many women [as a] plastic surgeon. The mastectomy is hard, it’s hard to lose your breasts. But with you, we took away a healthy breast.’ In fairness, my breast wasn’t 100 per cent healthy, but she was being kind and real. When she put what I was feeling, so bluntly, I could accept it.

How do you feel about it now?
I do have low moments, kind of like quiet, low moments. I will need some more fat [added to the breast] to make it more symmetrical. That could be [my own perception though], the way we’re brought up as women is that everything has to be perfect and look right. At first, I had a kind of a dent in in my breast from where the lump was removed, but it was my dent and I didn’t mind it.

Do you think you had enough support as you went through this?

I did have a lot of people tell me to just accept it, as if [how I was feeling was] a switch in my brain. I suppose maybe I’ve come to terms with the loneliness of that — I felt very lonely because I couldn’t make sense of it, even though there were loads of good people around me.

Removing my breast was a big decision.There are a lot of benign issues that can happen with breasts — like cysts or fibroma edema — things that may not fall under a cancer diagnosis. And that’s not to take away from anyone who’s had [cancer], but where do you go with this kind of trauma? There’s no box for you. It’s benign, so have a nice life — and that is true. But there’s a piece that’s missing.

My motivation for reaching so far across the globe to you is, is there somebody out there like me?