ITW n°80: Aurélie - K breast fighter.
Today, the sweet Aurélie, 34 years old, mother of a little girl aged 6 and a half, gives us her testimony against a K of the breast, discovered in October 2015. Aurélie testifies to raise our awareness of the K of the Breast discovered early, but also to talk about his rare genetic mutation Cowden syndrome.
With great gentleness and sensitivity, she tells us how remaining natural despite her double mastectomy, and the love of those close to her helped her overcome the battle.
(testimony sent on April 11, 2016)*
Let's get started:
Who are you ?
First name: Aurélie
Age: 34 years old
Profession: Nurse head of care unit in a medico-social establishment. (nursing manager in retirement home)
Where do you live: in Switzerland.
Why do you agree to share your story today?
To testify about breast cancer (discovered early) and to talk about Cowden syndrome.
What are your qualities (in a few words)?
I am gentle, persevering, diligent, attentive.
What are your passions (in a few words)?
my family, literature, art and women artists (Niki de Saint Phalle, Colette, Nancy Huston…)
What K (what cancer - grade if you wish / stage ditto):
K of the breasts: in situ on the right and stage 1 on the left.
When was it discovered? How old were you ?
It was discovered at the end of October 2015, a few days before my 34th birthday.
Under what circumstances was it discovered?
As my sister and my father were affected, I was closely monitored: every 6 months a check-up and I therefore alternated ultrasound and breast MRI. During the MRI, the doctor saw two fibroadenomas which had changed appearance, so biopsy.
(Since my adolescence I had multiple fibroadenomas in both breasts, but which had always been stable).
If you are currently undergoing treatment, or in remission (for how long?)
During treatment, I started hormone therapy in mid-February.
I think I can say that I'm lucky, I don't tolerate hormone therapy too badly: I have quite significant sleep problems otherwise the rest doesn't prevent me from doing what I want or need to do. (I haven't returned to work yet so I'll see about that too... maybe it will be more complicated!)
Can you summarize your (K fighter) story for us ?
It’s a family story.
First my father who had breast cancer (surgery and radiation) then thyroid cancer (surgery and radiation, again). He died several years later, at the end of 2013. He was in remission from his two cancers. He didn't wake up one morning.
One of my sisters diagnosed breast cancer (2013: surgery, chemo, radiation, hormone therapy). Start of genetic research. The first was BRCa1, the most logical, we had to wait around 9 months to learn that it wasn't that. During her follow-up, she met a dermatologist who mentioned a rare genetic disease (1/200,000) which could correspond to the signs that they had both developed. With the addition of dermatological signs typical of my father. And again 9 months later the results came in. It was the week before my MRI. My sister carries a mutation in the PTEN gene, which corresponds to Cowden syndrome.
Following my MRI, I had an emergency genetic test: a blood test. 15 days later I had the results and I also carry this mutation. Second diagnosis within 3 weeks of each other on November 13. I expected it, but at the same time when I heard it from the doctor's mouth it was a slap in the face. I am a nurse and I know exactly what awaits me in the years to come. This Cowden's disease increases the risk of developing cancer in several organs (breasts, thyroid, skin, kidneys, colon and endometrium) therefore increased monitoring until the end of my life.
With a little hindsight, I tell myself that there are worse things, I know what I need to pay attention to, I have good doctors, I sure don't laugh every day, but it's doable . What is most difficult for me is regarding my daughter. She has a one in two chance of being a carrier and experiencing what I'm experiencing today.
My other sister and my mother waiting for their genetic results.
What treatment did you have?
Bilateral mastectomy on January 13, 2016 with installation of bilateral expanders. (kind of small balloons).
For about 12 weeks I will go see a plastic surgeon to gradually inflate them (40 ml each time). I'm about halfway through the sessions.
Installation of definitive prostheses planned for September with hospitalization for a few days, then 2 outpatient procedures to do the nipples and tattoo the areolas.
Hormone therapy started on February 19
No rays no chemo
Thyroid removal by the end of the year (nodules on the thyroid already present) before it becomes a K!
What tips directly related to K do you want to share?
(your feeling with the doctor, your good treatment organization plans, anything that seems useful to you ;))?
1/ chemo: (ex: your tips, the helmet, your affinities with nurses):
Did not have.
2/ hospital: (e.g. contact with nurses / doc / caregivers):
Talk, talk and talk, with the nursing and medical staff, even if it doesn't seem like the right time, not the right thing to say. You should not keep a question or a doubt.
3/ “parallel” medicine, if you have done it (what disciplines, what were their benefits):
It's not really alternative medicine, but physiotherapy helped me a lot:
- lymphatic drainage: I didn't have any edema, but it makes you go out, meet people and “feel” your body (tingling, warmth in the arms)
- sleep disorders: intestinal and cervical mobilization: effective.
I recently started self-hypnosis, in relation to sleep, we'll see!
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
The day before hospitalization or an important meeting: entertain yourself with a good meal, a good film, a walk with the family, a book, etc.
What practical “well-being/beauty” tips can you advise us?
1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)
Moisturize the body and scars well: apricot kernel oil.
2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):
Wear comfortable clothes, colors
3/ daily (e.g. sport, food & co, meditation, reading, etc.)
I try to walk as much as possible. I'm not a fan of sport so I tell myself that it's the least I can do...
4/ hair problem (eg: did you wear a wig, scarves, hats)
Were you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?
At first I thought that since I no longer had breasts, I should compensate with something else to appear more feminine... makeup, jewelry, various accessories. I think I tried for a week. It was not me. For me it’s simple and natural! The only thing I've changed is wearing a scarf every day to hide the lack of volume a little.
What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?
- it's healing well now
- It’s weird, even though you’re young?!
- you don't have chemo, you're lucky
- ultimately it's not really cancer if you don't have chemo
- you will see next year you will have forgotten all that
How did your loved ones support you?
Above all, by their presence. My family and friends have always been there, attentive and gentle... I would like to take this opportunity to thank them here. Particularly my sister who experienced almost the same events, it helped me.
My husband was very gentle, patient and attentive even though he was very anxious. And my 6 and a half year old daughter: a real gem. I was afraid to explain it to him, to find the right words... should I say the word cancer? How to tell him about the hospitalization, about all the appointments? In fact I just had time to start talking to her, she asked me lots of questions and I answered as simply as possible. She talked about it with her mistress and her friends. Today is going well. She sometimes accompanies me to appointments, she asks me if it's to swell my tits? if the doctor is nice...
And what advice could you give to loved ones who accompany a K fighter?
Don't rush, be there, available.
Do you find out about K on the internet?
I am finding out about Cowden's disease because it is little known in the medical community and a lot of information is in English.
If so, does it make you feel good?
Corresponding with a person who also carries this genetic mutation would do me good, I think.
This is what I'm looking for through the rare disease info forum, this way!
What has the K changed in your life…?
(for example: your vision of the world, your priorities, your essentials, refocusing those around you, in your work, your philosophy..?)
It's mainly in my way of seeing things: I want to enjoy life. Do things that make me want, that make me happy.
I started taking drawing lessons (I had always wanted to do it, but never took the plunge). I'm also starting to think about it professionally. It’s okay to take care of others, but you shouldn’t forget yourself either.
Free field ;)
tell us what you want (which might not be in my questions):
Your site as well as Lili Sohn's comics did me good. To see you, so young and so dynamic, so fighting, it’s encouraging.
But nothing beats being with the people you love.
Thank you Aurélie, for your testimony, and your words.
You can leave comments for Aurélie, below.
*Many of you send me your testimonies, thank you for your precious trust, for this same reason, the broadcasts of your interviews will sometimes be broadcast in several months, but know that I keep and transmit absolutely ALL the testimonies that are sent to me , Thank you for understanding.
Please note that I do not retouch any Interview, they are completely free, it is your freedom, your story, I just add my personal touch with the illustration, they are delivered as they were sent to me ;)
NEVER GIVE UP!!