Breast Cancer Stories
Ductal Carcinoma In Situ, Stage 0, ER+; Paget's Disease
“I wouldn’t be doing the things I’m doing now had I not had cancer. It’s sad that this had to happen, but sometimes these are the kind of things that have to happen before people realize that they need to change things up a little bit.
If you have a cancer or struggle that you feel like you can’t make it out of, you need to be able to say, “If tomorrow, I’m taken away, at least I can say that the life I lived was happy and I did things right.” The life you’re living right now, make the most of it.”
Name: Natalie Wilson
Ductal Carcinoma in Situ, ER+
Paget’s Disease of the Nipple
1st Symptoms: Lump found on right breast
Lumpectomy, right breast
Double subcutaneous mastectomy
Reconstruction with implants
Tamoxifen, 5 years
Table of Contents
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What were your first symptoms?
My first symptom was a lump actually. It was not painful, but it was quite hard. I’m from a Jamaican background, and in Jamaica we have a fruit called guinep. On the outside, it’s kind of soft and squishy, but on the inside it’s hard. It was about like that, and I’d say 2cm round on the side of my right breast.
I felt it when I was in the shower lathering up. I wasn’t one of those women that did the regular monthly check. It’s not something I learned growing up. It was just something that I came across while I was lathering up. That’s how I knew that something was there and wasn’t right.
What do you remember of your first visit to the doctor?
The first visit was to see my family doctor. I’m not the type of person that gets too worked up about things if I don’t have a definitive answer, so I wasn’t feeling scared or worried. I just wanted some answers and went in with an open mind. She’s a young woman herself, so she said, “Okay, let’s just get you in for a mammogram and ultrasound.”
That’s when I asked the doctor to send me to a specialist who deals with cancer patients and reconstructive surgeries and all that. That doctor said to wait six months. She wanted to wait and see if it changed.
How did your doctor give you the diagnosis?
Six months later, I did have a lumpectomy. This is when I started to get worried. Between the lumpectomy and the two weeks I had to wait to get the results, that’s when I was concerned. It was like they had something that could really give me a definitive answer, and I had all this time prior to that to stew in it, so I was nervous waiting to hear the answer.
My doctor and I are quite friendly. She’s a nice lady. We talk about fashion and all that. We always preface our conversations with that before we go any further. I don’t know if that was her way of lightening the mood this day or what because she didn’t have good news for me.
She said, “I don’t know how I’m going to tell you this because I didn’t expect the answer myself, but you have breast cancer.” She said she felt the lump after surgery and didn’t think it was.
How did you react to the diagnosis?
I don’t know if anyone wants to hear that they have cancer, but it was coming from a doctor who knew what she was saying, or she wouldn’t have said it. At that point, I was by myself. Two weeks in after surgery, I was feeling pretty normal. My husband was working, so I said I could go by myself.
How did you break the news to your loved ones?
I definitely called my husband first – as soon as I got in the car. I was overwhelmed and full of tears. He had me take a breath and calm down. His first question was, “What are they going to do now?”
My doctor had decided that she wanted to discuss it with the chief, head surgeon of the hospital. When I left the appointment, she hadn’t given me a next course of action, so I didn’t know what to tell my husband. I was still waiting for answers myself.
He’s more of a worrier than I am. He’s a typical man though and keeps things within, but I know that was killing him. I came home, and we said we were going to wait and just went back to business. Honestly, we went back to taking care of the kids, working – all the kids were in sports, dance, piano, so you just keep going.
2. Treatment Decisions
Did you get a second opinion?
The second opinion came from the chief of the hospital. My doctor called and said, “I’m going to send you to him, and he’ll talk to you about what the next steps will be.” That appointment was within a week.
When the doctor took the lump out and sent it for pathology at that hospital, the technicians damaged my sample. Instead of calling the doctor to tell her that the sample was damaged, they automatically sent it to another hospital – a cancer research hospital in Toronto. That hospital was the one who came back with the results.
It was upsetting for me that they took it upon themselves to send it away after damaging it without letting us know what happened, but at the end of the day, the results came back and that’s what we needed to take the next step.
So, the chief now had both sample readings – the damaged one and the one that came back from the cancer hospital. They both said the same thing. It was stage zero DCIS still within its sack.
What were the next steps after getting the diagnosis confirmed?
He suggested I have an MRI, and it came back that there were some suspicious spots in the marginal area near the lump. He suggested we either go in and take out more tissue – which would leave a big gouge in my breast – or have a subcutaneous mastectomy. Subcutaneous meaning they would leave the nipple and take out 95% of the breast tissue. He said, “Go home, talk to your husband about it, and let me know.”
I didn’t want to have to worry later on in life about cancer resurfacing in my other breast. He suggested that I do some more research on because they usually just work on the problem breast, but I knew I wanted to do both. That was what happened – I got the double subcutaneous mastectomy.
3. Surgery Complications
You had complications after your first reconstruction surgery?
In September 2008, they started the first reconstruction. The way you reconstruct, if you’re going to end up putting implants in, is obviously to first remove the breast. They took 95% of my tissue because I kept the nipples. They cut away a lot of the skin, and they put in a tissue expander. It’s like an empty balloon.
The doctor only wanted to do one breast at a time, so of course we started with the problem breast. She did the subcutaneous mastectomy and put the tissue expander in.
They took out the tissue expander, waited months for me to heal, and then tackled putting the tissue expander back in during the next surgery. That one was successful. What happens after that is you go into an outpatient room every three months, and they inject saline solution into the tissue expander to expand the deflated balloon and your skin. I did that three times until my skin expanded enough to put in the implant.
Once we got the implant in on the right side – which was the problem side, they tackled the other side. Same thing that the first time with the hematoma, the blood transfusion, all of it happened again on the second side.
Did you have any more complications after that?
I formed a lot of scar tissue. That was causing a lot of problems because the implants were being squished. My breasts weren’t round. They were sort of oblong. The scar tissue was so hard and painful.
This doctor did so much research. She traveled to Europe even because they have a history of a lot of successful cosmetic surgeries, and she said she was going to go find out if there was a way to get rid of the scar tissue. She finally came back and said she couldn’t help me.
She found a great doctor for me at a teaching hospital in Toronto who uses a human cadaver tissue. They can use it in different parts of the body, but for me, she used it in my breast to give me some more muscle and form a hammock to hold the implant and stop the scar tissue from building. I think that took three or four surgeries with her in order to rebuild the breast.
She put in the human cadaver tissue to add to my muscle, let me heal, and had to go back in. She did fat grafting, so she took fat from my inner thighs and put it in my breasts. I had three sessions of that. Then she put back in the implants. That was surgery number thirteen.
You found out you had a second cancer. How did that happen?
Around the time of that surgery, I noticed my nipple started to look odd. This is now 2016. My nipple was looking odd, cracked and bleeding. It looked like how it looked when I first started nursing. When you nurse and your baby suckles, the nipples get pretty irritated and red, and it looked like that. So, when I was going in for surgery thirteen, I told my doctor, “Look, something doesn’t look right. Maybe my nipple is finally dying after almost losing it.”
She said she would have a look at it. She took a sample of it when she was finishing up the surgery and sent it off. That came back as cancer of the nipple.
What did your doctor do about the nipple cancer?
What we ended up having to do was book another surgery to remove the nipple. It’s not a matter of just taking the circle. It’s taking away a good chunk of your breast tissue in order to get rid of the nipple, the areola, and the tissue around it. That was surgery number fourteen.
From that surgery, because she had to take so much tissue, my breasts started to basically burst open because I’d had so many surgeries. My skin and muscles were worn out. My breasts were forming pressure ulcers. With that, I had to have surgery number fifteen. It was to fix the problems from the previous surgery.
She took out some extra tissue to just be sure she got all the nipple cancer, and that was great.
Then there was a third diagnosis. How did you react to that?
I went in for my results after the nipple removal, and she said, “We found more cancer.” She took out the nipple and had went in to take more tissue, and it showed that there was further DCIS in my skin.
I didn’t have tissue anymore. The bulk of what I have is muscle and implants. Of course, if you have skin, then you have connecting milk ducts – even if you just have 1% of tissue. That’s where the DCIS resurfaced.
So, this time, it was the weirdest feeling. It was like I had heard it so many times, I wasn’t surprised. I didn’t react right away. I wasn’t heartbroken and sobbing. My husband had that reaction. I turned and looked at him and he was sobbing. He looked like he was hyperventilating.
My role changed at that point. I had to console him. I was playing the role that he was to play. I asked the doctor what was next. She said, “I think we need to get rid of that whole reconstructed breast and start from scratch.”
4. Remission & Reconstruction
Did you decide to go ahead with starting reconstruction from scratch like the doctor suggested?
I went to prosthetics. They’re great for women that don’t have breasts. They look and feel natural. Nobody could ever tell that I didn’t have a breast on one side. Because the left side was also reconstructed, and part of the fat graft was shrinking, I was wearing a partial prosthetic on that side as well. I was wearing one and a half prosthetics, and I was okay.
About a year and a half later, I decided that I wanted to try one more time. I decided I wasn’t going to let cancer win. The only option left for me was to use the LD muscle from my back. What they do is they take a good chunk of the muscle, tissue, fat and skin, and they cut a diamond shape, bring it around your arm, and they place it where your breast will go.
From there, I had more fat grafting sessions. They had to start taking fat from different parts of my body because they had already taken from my inner thighs multiple times, and they were showing effects of that. She used fat from my abdomen.
During one of the fat grafting sessions, I formed a flesh-eating disease on my chest because the fat died. It’s called fat necrosis. It’s like a staph infection.
When your fat dies, sometimes instead of absorbing back into your body, it can form an infection, and that’s what happened across my whole chest. I was on an IV and morphine until it went away. Then we proceeded with another fat grafting session since that one didn’t work.
On May 2th, 2019, I had my last surgery – which was surgery number twenty – to implant more fat and put in the implant finally. What they do is they add the muscle, fat, more fat, and then the implant.
Is there anything you wish you had done differently during treatment?
If you’re leaving your nipple, you have to have some sort of blood supply in order for it to survive. I knew that there was 5% of the breast tissue left to keep the nipples alive, but I didn’t correlate that with cancer resurfacing.
Are there any lasting side effects that you can think of from your surgeries?
With regard to the LD surgery, my doctor used so many fat grafting sessions, so she didn’t have to take so much muscle from my back. I’m waiting to get back into the gym and to my regular fitness training to see if I have any mobility issues. That’s the one possible concern I could have.
As far as lasting effects, my energy level isn’t perfect because of having so many of the transfusions. I have an underlying blood condition. The doctors don’t quite know what it is. I take a lot longer to heal internally than others. I’m very low on iron, so I have to keep up on my iron pills. Other than that, I really live a full life.
What is your follow-up surveillance like?
I don’t have MRIs regularly anymore, and to be honest, that’s the only thing that would keep me 100% worry-free because that’s the only thing that gives you all the answers you need. Mammograms and ultrasounds don’t work for me anymore because I have implants. It’s a matter of physically feeling around and watching how I feel.
5. Emotions & Quality of Life
How did you deal with the emotions and stress? What was the lowest point?
One time I was driving home from my godmother’s house with my three kids in the truck, and I felt this overwhelming feeling to turn the wheel and drive the car over the bridge or to drive the car into another truck. It was just so overwhelming.
When you go through surgeries – a lot of people think reconstructive surgeries are just reconstruction. You’re going through a lot of emotions because you’re not just fixing your physical body. It takes you back to the real reason why you’re even having the surgery in the first place.
Even though they’re cosmetic or sort of routine seeming surgeries, you’re always scared you won’t make it through because anything can happen. Each surgery I had, it played on my mind.
Even after this last surgery, I still think about it. I wonder if it’s ever going to come back. I don’t let it consume me, but I do wonder. Now that I have implants and that physical part is built back, I sometimes wonder if I risk masking cancer if it comes back.
I think that’s a big reason why a lot of women choose not to rebuild. They don’t want to hide the possibility of finding the cancer again at a later date if it shows up. I trust in the technology and doctors, and I trust in God. I try to live my life as best as possible. I try to do good and support and give back, and I feel that I’m putting positive light out into the universe and hoping to get some of that back.
What helped you deal with this level of stress?
I went to my family doctor and said, “Something’s got to give here because I’m not doing well. I’m arguing with my husband about things I wouldn’t ever argue about. I took a trip to Mexico for a week by myself. I’m doing all these crazy things.” I knew something was going on.
She put me on a very light antidepressant to bring the melatonin levels up to the happy place. I don’t know that I like this idea – give me medication to fix a problem and another to fix the problems the other caused, but it helped. I was weaned off of it within seven or eight months. That limited the stress.
Speaking about it is what’s really helpful. When you get all the heavy stuff off, it’s almost as if you’re saying, “Here. Someone else carry this for a while.” It feels so much better and so much lighter. That’s what I do right now as a business, and it’s really helped me.
How important is it to have caregivers and support?
There are caregivers in many forms. There are your doctors, obviously. There’s your partner. They’re the ones that are going to give you emotional support you need. There’s the support of your friends that’s going to take loads off as far as your kids and activities they need to get to, and your house – helping keep it in order when you’re low. Your parents are there to give support.
There are your church and people of faith around you to help you build yourself up within. Without having that, it doesn’t make sense. If you don’t have faith that you’re going to be okay, you’re probably not going to be okay. You have to put the positivity out there in the universe, and that universe for me is my faith.
Your children give you support too. They remind you that you always have something to look forward to. You have to be here to see them grow. You have to be at their graduations, games, weddings, and all that. It motivates you, and that’s caregiving.
How was it being a young mother and being diagnosed with cancer? Did you tell them?
Because it spanned for so many years, I had to deal with it in different ways. My oldest is 19 now, the middle is 14, and my youngest is 11. So, in the early years, my youngest, my son, was a newborn. My middle would’ve been about 4, and my oldest would’ve been about 9. They were too young to explain the details. They knew that mommy was sick and she was going to have surgeries, but she was going to be okay.
As the years went on, they knew I had cancer, they knew it was in an early stage, and they knew I had to be on medication to keep the cancer from coming back. They knew I was going to rebuild and that I have fake boobies. They would see my prosthetics in the bathroom, or sometimes I would just take them off because they’re uncomfortable.
When it came back in 2016 is when I sat down with all of them. At this point, it was a different kind of conversation. I didn’t want to keep things from them. This time, I told them it was the cancer I had before but had come back again. I told them it was going to go away, and I wouldn’t have to go through chemo or radiation, but I was going to need more surgeries to get rid of it. They understood.
They were still concerned, but I had to reassure them over and over again that I would be okay. I can only imagine what they were going through in their heads. I know how my husband and I felt when the cancer came back, so I can only imagine what they were going through. That was the hard part for me.
My eldest daughter, she’s like her dad. She’s more stoic. She wasn’t around with me much. She would ask if I needed anything, and she would message my other daughter to see if I was okay, but she stayed in her room a lot. Much like my husband dealt with it, she was worried. She didn’t like to see me in pain. Seeing me that way was hard for her.
Were there times during treatment you had to advocate for yourself?
I saw an additional oncologist other than the initial doctor back in 2008, and aside from the chief, head surgeon. They sent me to an oncologist. It was like I was the doctor and he was the patient.
He said, “You had the mastectomy, so you don’t need to do anything. You’re good.” I said, “Well, what does that mean?” He said I was going to see the chief surgeon at the hospital, and he would tell me what to do next. I said, “They sent me to you for a reason. I didn’t have a mastectomy. I’m going to have a subcutaneous mastectomy. They’re two different things.” He said, “Oh. Let me look at the chart.”
If you’re a doctor, you should be right. There’s a difference between the subcutaneous mastectomy and a mastectomy. The subcutaneous mastectomy where I left my nipples is why the cancer came back the second time. So, if he was being diligent and looked at his chart, maybe he could’ve advised me further and said, “If you’re concerned about it coming back, you should know there’s a possibility of nipple cancer.”
I didn’t know about nipple cancer back then. After getting it, I realized there were so many things I didn’t know. I researched some more, and the onus should’ve been on the doctors.
Do you have any advice on self-advocacy for others?
While you’re there, if you don’t understand something, tell them. If they say you need to do something, and you don’t understand it, say something. If they’re failing to tell you that you need to do something, ask. If there’s something that another doctor has recommended and this one isn’t, bring it up.
I think that women should find another doctor if they’re not comfortable with the one they have. Perhaps bring someone with you. In your time of turmoil and stress, you’re not going to have the wherewithal to ask all the questions you need to. So, bring someone with you.
Research, ask questions, tell them you want all your information so you can take it to another doctor if they’re not meeting your needs. You’re entitled to your scans. That’s your body.
If you don’t understand the lingo, tell them. Say, “I don’t understand what you’re saying. I’m not a doctor. Can you explain that to me?”
How was the financial aspect of going through treatment?
I’m in a position where we’re financially okay. I could stay home and not work a day in my life. My husband’s business can take care of everything, but I’m not that girl. I’ve been working since I was 13. I love to work. I’m an independent woman. I like to have my own money that I know I brought in.
In Canada, we have unemployment insurance. You pay into that when you’re working, and it can kick in if you apply for it, but it only covers part of it. Your bills are not going to change just because you’re sick. Your mortgage isn’t going to change because you’re sick.
You want to keep your children in some normalcy, and life must go on. So, what happens then? For a lot of people, it is hard. I haven’t had the issue, but I understand it. I help women I talk to now with their utilities, groceries, transportation to and from the hospital, things like that.
Your cancer inspired the work you do now?
In 2016, when I realized I had been through cancer three times and was still standing, I had to do something with that. There was no reason why I shouldn’t be imparting what I’d learned through my experience to woman who might be in a similar situation.
I went through all those stages of healing until I got to an end stage of philanthropy where I just felt so overwhelmed and wanted to give back. I wanted to share how I was able to persevere through each circumstance. I wanted to show that I’d been through the dark times and depression and prove that you have to persevere. At the end of each day, there’s a beginning of another.
High Heal Diaries is a platform where women can share their stories with other women. Nobody’s judging anybody.
The platform comes in different forms. I do a YouTube talk show. I do the keynote speaking engagements. I do life-coaching. I’m a certified coach practitioner. For those not at a place yet where they are able to speak about their issues in a public form and want help, I can help them get there. I do inner and outer beauty makeovers.
If you put a little makeup on, get your hair done, and you smile at what you see in the mirror, you’re going to feel happier. If a woman is going through a struggle, we’ll help them with wardrobe shopping, maybe a little makeup, skincare, facials, whatever, in order to help them feel better about the outside and then coach the stuff on the inside.
What is your “new normal” after cancer?
The new normal is really busy. The new normal for me is living a good, full life. It is not taking everything on. I’ve become a little more selfish. It’s not a bad selfish. I come first. If I’m not good, then nobody else is going to be good.
On top of that, I don’t want cancer to ever come back. I think I’ve learned what I need to learn now. I would never take away the fact that I had cancer though. I would never change that part of my life because I’ve become a better person.
I wouldn’t be doing the things I’m doing now had I not had cancer. It’s sad that this had to happen, but sometimes these are the kind of things that have to happen before people realize that they need to change things up a little bit.
Do you have any final words for anybody who may be going through something similar?
I just want women to understand that there are a lot of things out there in society and the environment that we need to cognizant of as far as what we’re putting in our bodies. I’m not going to go off on a tangent about doing all these drastic things because everybody’s going to do what they need to do, but a lot of times we just live, and we do. Sometimes we need to think of how we live and what we do because everything has ramifications.
Also, I’m not preaching. I’m not one of those Bible thumpers, but you have to believe in something. You have to believe in a higher power because we are not doing it on our own. You have to believe that although you might be sick, you have to pick up and keep going as best as you can.