Paget's disease of the nipple: "Don't let waiting for a diagnosis deplete your reserves!"

Hello @mlaure, thank you for agreeing to be interviewed for the Carenity audience.

First of all, could you tell us a little about yourself?

My name is Marie-Laure, I'm single, I live alone in the country with a few pets. 

I have three children, a girl and two boys, and each of which has a child. The eldest of my sons has lived in England for several years, we stay in touch via video calls and, this year, my granddaughter came to spend the summer with me. My daughter and my youngest son don't live far away, so we try to see each other regularly.  

My family is very important to me, they are essential to my happiness. I love country life, nature, I read a lot, and I like to learn or discover new things.  

I'm an adult educator, teaching a variety of topics such as social work, entertainment, hospitality and occupational integration. I've had a very varied professional career, which explains the diversity of the courses I'm involved in.

You have breast cancer. Could you tell us when you first noticed symptoms? What were they? What prompted you to seek help?

I have Paget's disease of the breast, a cancer of the nipple or, in the language used around this cancer, I have a Paget. Not to be confused with Paget's disease, which is a bone disease.  

The disease started a few months before I went to the doctor specifically for it. I had an itchy bump on my areola, I thought I'd been bitten by an insect. I vaguely mentioned it to my doctor, but he didn't look into further.  

On May 17, 2022, I went to see a gynecologist for an annual check-up, I mentioned the pimple-like bump, the gynecologist told me it must have been a bite. As part of my gynecological check-up, I was given a referral for a CT scan and ultrasound. I went to the appointment and only had a mammogram. I asked about this "pimple" that wouldn't go away, and was told it was a dermatological problem.  

One day, I hooked the pimple while removing a dress, a black crust formed that wouldn't go away. It softened and then fell off, but never completely healed. After a good month, I went back to my doctor, insisting that, now, it was an ugly scab that wouldn't heal. There, my doctor prescribed an ultrasound and later did the appointment himself along with my gynecologist.

What tests did you have to undergo to obtain the diagnosis? How long did it take for the diagnosis to be made?

The first tests were a mammogram and ultrasound, followed by a biopsy.  

The waiting time for the biopsy results was extremely long. In fact, 15 to 20 days were added to the expected time, due to the type of cancer it could be, and also because my GP was on 2 weeks of sick leave.

So I waited a good month between the biopsy and the communication of the result. The diagnosis of Paget's disease of the nipple therefore took two months, between the ultrasound and the biopsy result.  

This was a very long time for me, waiting without a diagnosis was the hardest to live with.

Did you receive all the information you needed to understand the disease? Did you do your own research?

I'd say that the information I was given as the disease progressed wasn't complete enough for me. Of course, surgery was considered right away. Initially, it was just a lumpectomy (removal of the tumor), followed by chemotherapy or radiation, or both.  

The gynecologist had given me an appointment for a skin sample to collect Paget's cells. On the day of the biopsy, the gynecologist told me that his department head had to come and look at the lesion. So he set me up for the examination and prepared the necessary equipment. We waited for quite a long time, and I remember the wait was heavy, with the stress of the forthcoming examination and the fear of pain, especially as the samples were taken from the nipple. Luckily, I never felt any pain during the biopsy. After the procedure, the department manager arrived, looked at my breast and said that the areola and nipple had to be removed. The day's examination was therefore unnecessary. 

She quickly explained to me, outlining with her hand, what was going to be removed, told me that there were tattoos for after the operation, and left.

I had a very hard time of it because the announcement was made so quickly, as if they were telling me they were going to have to cut my hair a bit, just that hair grows back. I'm still very "scarred" by the way I was told... 

As for the treatment protocol, even after the operation, nothing was decided. Maybe chemotherapy, maybe not...  

I'd like to offer a word of advice here. Although I'm aware that it's very difficult not to do it, avoid Internet research! I, for one, have spent entire days immersed in the world of cancer, with, of course, always reading about the worst that could happen. Without realizing it, I spent days researching, reading and questioning. I'd start in the morning with a question that had come to me during the night and, without realizing it, it would keep me going into the evening.

What is your current level of care? Are you satisfied with it? What is your treatment? How did you rate/experience the medical and/or psychological support?

I had two operations for this cancer. The first was for removal of the areola and nipple, and the second for lymph node dissection as the sentinel lymph nodes were also affected.  

At present, I've completed the radiotherapy, I'm now on hormone therapy, and my follow-up is mainly carried out by my GP. Once a month, I see my radiotherapist, who is also an oncologist.  

During my second hospitalization I asked for help mainly for my mental health because I felt I wasn't doing well and my financial situation was deteriorating at a dizzying pace, but nothing was done. My gynecologist told me that he would contact the psychologist and the social worker but after following up with the administrators in the gynecology department, they told me it was too late: as I was no longer hospitalized, I had to go find help in the private sector.

So I'd say no, I didn't get much support or guidance during that period.

Had you already had cancer of the other breast? Was it identical?

With my first breast cancer, I noticed a lump at the top of my left breast. I consulted my doctor, who contacted and referred me to a gynecologist.  

I had a quick first appointment with her, then another the same week, to do the biopsy. About two weeks later, she called me to come in the next day. At this appointment, she told me about my cancer and the entire treatment protocol. A first operation and, possibly, another operation if the sentinel lymph nodes were affected.  

She explained to me what sentinel lymph nodes were, where the scars from the operations would be, the number and timing of radiotherapy sessions, and the chemotherapy that would be used if the lymph nodes were affected. 

I left the appointment with a very clear understanding and a telephone number I could call if I had any questions.  

Really, the second time was nothing like the first! And I had said to myself at the start of this new cancer: "It's okay, I'll manage, I already know how it goes!

Have you changed your lifestyle and diet since you were diagnosed with breast cancer?

No, not really, why change since it - the cancer - is already here.  

I'm someone who naturally tries to balance my diet, and although I don't do any particular sport, I move around in my own way (walking, gardening, etc.).

What impact does your illness have on your private and professional life?

As for my private life, as I said, I live alone. So for the moment, I don't have too many "problems" in my private life, apart from the certainty that I won't be able to have an intimate relationship with a man. 

On the other hand, on the professional side, the situation is rough. I had a series of fixed-term contracts, and the last one wasn't renewed. My employer told me not to hesitate to reach out once I'd been treated. I had also been "promised" that they would call to check up on me and invite me to the end-of-month dinner (a small tradition). I never got another call, nor did anyone invite me to anything. Today, I don't feel like going back there to ask for work.

Have you received support from your family and friends? Do they understand the disease?

I felt very alone, although this is a fact of life.  

I tried to spare my children, and succeeded, so I didn't get much support from them. They have their own lives.

I don't have many friends, in the sense that I understand the word "friend". I have many acquaintances, but few friends. As for acquaintances, few know about my condition. I can't see myself running into someone I know and saying, "Oh, by the way! I've got breast cancer!” If the conversation lends itself to it, I say it, but if not, I don't, because I don't know how to broach the subject.  

My best friend, who lives quite a distance from me, doesn't know either. At the beginning of the illness, I wanted to tell her, but she told me she was separating from her husband, whom I also know very well. And she told me about the difficulties of this separation, and I didn't want to add to them. I told myself I'd talk to her about it later, when the diagnosis was known and I knew what was ahead. Since it took a long time to define my condition and decide on the treatment, I didn't tell her and she still doesn't know.

You wanted to talk about illness and its impact on the life of a single woman. What can you tell us about it?

Being a single woman should be taken into account at the start of the disease. Services should offer to put you in touch with social assistance, so that you can be prepared for the financial expenses associated with cancer. 

Whether you're a woman or a man facing the disease, I think it's all the same. Unless you have a salary continuation plan, your income is greatly reduced in the event of illness, but your expenses are not. Your savings are quickly depleted, and in addition to the uncertainty you already face in the face of illness, your socioeconomic position becomes increasingly precarious.

How are you doing today? How are you coping with everyday life?

Today, I'm learning to live with secondary lymphedema of the arm. I'm trying to do what I can to limit the disabling effects of this lymph node surgery. At night, I wear a compression sleeve. I have lymphatic drainage sessions with a physiotherapist. I try to do lymphatic massages myself.  

My arm is still very swollen, and lymph is also accumulating in the operated breast, so I'd say that while the word cancer is a little out of my daily life at the moment, my morale remains very low as regards my future prospects.

What are your plans for the future?

I'm working with my Pôle Emploi advisor on my career plan, to find an activity compatible with my physical condition. I hope to find one soon.

Finally, what advice would you give to Carenity members who have also been affected by this type of breast cancer?

Don't go looking on the Internet!!!  

Stay positive, it may be a long road especially if you have the wait for results.  

Ask for support during this period of uncertainty. Don't let this wait deplete your reserves of dynamism, fighting spirit and optimism. You'll need them afterwards.

Any last words?

Full of courage to all. Be strong, but give yourself the right to be weak.

Many thanks to Marie-Laure for her interview!

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