Multiple sclerosis and breast cancer: "My care has been great!"

Hello mireille57, you agree to testify on Carenity and we thank you for it. 

First of all, could you tell us more about yourself? 

To introduce myself, my name is Mireille, I am soon to be 58 years old, I am married and I have three children aged 31, 28 and 23 as well as a little girl aged 2 and a half, my little wonder, my medicine, my strength to live. 

I worked all my life until I was diagnosed with multiple sclerosis.  

Since then, I have been inactive professionally, I don't know how to fill my days with any kind of activity, but I love being alone with myself and I feel the need to do so.  

How long have you had multiple sclerosis? What symptoms alerted/prompted you to seek help? 

I was diagnosed in January 2016, the 28th to be exact. I was 51 years old at the time. For a few months, I had been having symptoms that I ignored because I don't usually go to the doctor for "little boo-boos." I told myself "it will pass as it came". 

I had tingling in my feet, with numbness, a loss of sensitivity in my thighs, stomach and back, as well as loss of balance. I searched for information on the Internet but did not want to go any further.  

I continued to work with great fatigue, I did not understand what was happening to me but I tried to finish my work days. 

It wasn't easy, I was a catering employee in a canteen that welcomed 110 mentally handicapped children. They were "my children", they needed me. I did everything I could to satisfy them and they were happy to oblige. 

My job required standing for long periods of time with 30 minute breaks and, on top of that, a lot of walking and physical exertion sometimes in the heat. 

I didnt't know it yet, but a tsunami was coming, my body was getting exhausted, my nerves were taking a hit with fatigue, but I wasn't giving up. And then in 4 weeks, I would be on vacation for a month and a half. Will I make it until then? 

Finally it was the vacations and I thought that I would finally be able to breathe and rest! 

Along with my family, I went to a sunny place for holidays, I sacrificed myself because the heat exhausted me (now I know why). I was too eager to go back home in the cool of the sun, but nobody could understand how much, so I suffered in silence.  

September arrived and school started. 

I was thrilled to be back at work and to see my children again. The first month went pretty well even though the tingling, numbness and loss of balance were still present. 

In mid-October, at my workplace, my eyesight was playing tricks on me, I had a veil in front of my eyes, I could not perceive light colors, everything was dark and the light was dazzling me and attacking me. 

I called my ophthalmologist who told me to come to his office immediately. I couldn't leave my children behind, so I went there first thing the next day. From that moment on, a series of examinations followed. The ophthalmologist and the attending physician consulted each other. Moreover, a weight loss of 15 kg was not very reassuring for them. We will know the cause later. 

Was the diagnosis difficult to make? Did you consult many specialists? How did you feel when the diagnosis was announced? 

It was a real headache! Then, one day, I was told about a brain MRI and a lumbar puncture. I dared to ask why. MS, these two letters pronounced with the tip of the lips by the ophthalmologist made me realize that it was serious but I did not imagine what impact it could have on my life. 

The MRI spoke, but I had to wait for the results of the lumbar puncture, which would come seven weeks later. 

During this long wait, I met with my neurologist and other ophthalmologists at the hospital. Without confirmation from the lumbar puncture, I would not be able to benefit from corticosteroid boluses to reduce the inflammation of the left optic nerve because I did have optic neuritis.

On January 28, 2016, MS is confirmed, I get my corticosteroid bolus but unfortunately too late, I will never get my left eye back. 

How frequent and intense are your attacks, how long do they usually last? What are your daily symptoms? 

I have had 5 relapses in 2 years, 4 of which were ocular which I was able to recover and a sensitive relapse in my left hand that I did not recover. 

How has the disease affected your professional and private life? Are you still working? 

I have been off work since the first eye attack that triggered the examinations. After 3 years of sick leave, I was placed on category 2 disability for inaptitude. 

You also have breast cancer. Could you tell us under what circumstances you became aware of it? What prompted you to consult a doctor? 

At the end of February, one month after the diagnosis of multiple sclerosis, I finally decided to have a mammogram as part of my breast cancer screening. The appointment had been sitting in a drawer for several months, and something was drawing me to take it out... The appointment was made on the spot for mid-March. I had no warning signs, nothing on palpation, no mass, it was simply this summons and my guardian angel that pushed me to consult. 

On the day, the radiologist did not like what he saw on the images. He immediately made an appointment for a breast MRI. Fear set in because the examination confirmed the radiologist's fears... 

And here we go again for a battery of examinations but in another field and always in the same hospital. My gynecologist took over for the rest of the schedule. 

Everything went very quickly, she scheduled a biopsy for the next day. The senologist who performed the biopsy was extremely kind, and I would ask her for each new check-up that would follow. She insists on telling me the verdict herself, so I would wait 7 days. It was an interminable wait. 

The verdict was announced: infiltrating ductal cancer grade 2 of 13 millimeters. She reassured me as best she could, but to no vain. I was no longer there, I no longer existed, it was a second tsunami a month apart. 

My husband takes over for the rest of the information on the protocol to follow. She has already scheduled the next step and the meeting with the surgeon is scheduled for March 30, the best one I was told. That day, I met Dr. G, this man, so jovial, is positive and reassuring at the same time. 

We chose April 14 for the date of the operation, which would be an outpatient lumpectomy. He was present at my side when I woke up to reassure me that everything had gone well, that the first lymph node removed was healthy, that there was no need to remove the whole chain. I saw him again 8 days later to know the results of the analysis of the tumor. Everything was reassuring, all good notes for the future. 

I would not have chemotherapy but 33 sessions of radiotherapy and 5 years of hormone therapy. He told me, without humor this time, that he had to operate again because the analysis showed that he had not removed enough margin around the tumor. When I came back 8 days later, everything went well once again in this crazy and pleasant operating room. The medical team was great and I will keep a good memory of it, nothing traumatic, everything was perfect. 

Then came the meeting with the radiotherapist, who was also wonderful! I must admit that I am lucky with all the medical staff I met in this hospital. Everything is clear now. He sees me once a week during the radiotherapy for a check-up. He is very reassuring and tells me that he is very confident about the rest of my journey. 

Finally, the last step is hormone therapy for 5 years, of course with all the side effects that this entails. I was also advised to take post-cancer cures, which I did for two years in a row, and which were quite beneficial for my joint problems. 

As far as check-ups are concerned, I am followed up every 6 months by the radiotherapist as well as by the gynecologist, with one check-up mammogram per year, which will inevitably be a source of anxiety, but which is reassuring each time, to make sure that the cancer has not returned. 

What was or is your treatment? Are you satisfied with it? 

I chose to have my multiple sclerosis and my breast cancer treated in the same hospital. It's quite convenient when the treatments overlap in the same day.  

Throughout my journey, I was able to meet great medical teams with top-notch and beneficial care. 

How are you doing at the moment? 

Today I am doing relatively well. The breast cancer leaves post-radiation after-effects on the operated breast. They are being treated by my physical therapist, who uses LPG massages. The side effects of the hormone therapy faded and disappeared when the treatment was stopped. I can say today that I am cured, at least physically but not psychologically. 

As for the multiple sclerosis, which was very virulent during the first two years, it is now so stable that I no longer need treatment, on the advice of the neurologist, of course. 

I have an MRI surveillance once a year and consultations with the neurologist every 6 months to review the situation. Multiple sclerosis has left me with sequels on my left eye with an amputation of the visual field, a loss of sensitivity in my left hand, muscular weakness, great fatigue but I manage! 

I also suffer from very important cognitive problems, I see a neuropsychologist and a speech therapist once a week. 

It was very difficult for me to write this testimony which required a lot of effort and concentration for several days. 

What are your plans for the future? 

I live from day to day, I don't really have any plans. I enjoy my little girl 2 days a fortnight. I have not changed my lifestyle, I do not deprive myself of anything, everything is good to take. However, I have learned to get away from any source of anxiety, to avoid difficult people and above all to live in peace.  

What do you think of patient exchange platforms like Carenity? Do you find the advice and support you are looking for? 

The patient exchange platforms can sometimes give me some advice, exchange on the disease, and especially make me meet special people, that you can't meet by chance. Then, above all, creating links with people who understand the disease, it is rather positive, because others do not understand. 

I am lucky to be surrounded by a family that is very present, we are very close, united and supportive, and there are no taboos. 

What advice would you give to members also affected by multiple sclerosis or breast cancer? 

Any advice? If you want some, ask me, I should have been a psychologist in my life, I missed my vocation (laughs).  

Any last words? 

After a tsunami, there is always damage, you have to rebuild everything but not in the same way and especially in a more solid way to better cope. We never give up even if we imagine that it is the end, my diseases are the proof! 

A big thank you to mireille57 for her testimony!    

Was this testimony useful to you?    

Click on "Like" and share your thoughts and questions with the community in the comments below!    

Take care of yourself!