Breast cancer and mastectomy: My story

Hello Cacalou, you were treated for breast cancer from May 2011 to August 2012 with chemotherapy. When was the mastectomy considered?

From my first appointment at the Institut Curie on May 31, 2011.

I consulted my GP's replacement in April 2011 (during the school holidays). She prescribed an ultrasound and a mammogram. The radiologist told me to see my doctor as soon as possible. This I did since he was back from holiday. So it was my GP who gave me the contact details of the Institut Curie. The surgeon who received me on May 31, 2011 told me that I had an aggressive, infiltrating and inflammatory cancer and that I had to remove the breast because the tumour was large and there were cancerous cells scattered all over the breast and even on the skin.

My mother had asked my father to go with me. You should know that I left the family home in January 1987 because I was very distant with my mother, to the point that living with her on a daily basis weighed on me. So I found my father in the waiting room. I sat down next to him, as dignified as possible (because there were many people there), not out of shame but out of respect for those who were there for the same thing as me. I cried before I could even tell him what the surgeon had told me. 

How did you react? Was it a difficult decision to make?

I didn't have time to feel sorry for myself because I had to go to the appointment desk. I had the orders for a blood test, a biopsy and a catheter because the chemotherapy was going to start on June 15th. Getting straight to "business", I think that's what saved me, especially from the depression even though on June 8th I imagined that I might be celebrating my last birthday (I was to be 46 years old).

It was not a difficult decision to make as I had no other choice if I wanted to have a chance to heal. The programme was as follows: chemotherapy to stop the proliferation of cancer cells from June 15, 2011, mastectomy on January 3, 2012, followed by further chemotherapy and radiotherapy. It was not hidden from me that the biggest risk to my health was the fact that at the time of removing the breast the surgeon would pierce the tumour.

The most difficult thing was telling my daughter; I had always raised my daughter alone as her father (an Algerian living in Oran) had never moved to France to live with us. We cried a lot and when she asked me to fight and not to let the cancer win, I promised to do my best.

How did you chemotherapy go before the operation ?

The chemo consisted of 3 different "cocktails". There were 4 sessions for each one, 3 weeks apart (or more if my condition and/or my blood test did not allow it). I was lying on a bed or sitting in an armchair, depending on my condition. For the October session, my daughter and my best friend came with me because they knew I wouldn't be going home afterwards. Otherwise, I always went alone in a taxi with a taxi service.

I lost my hair on June 30, 2011. My daughter shaved my head a few days later because I couldn't bear to find hair everywhere I went, including on the table when I was eating or preparing food, in the sink when I was doing the dishes. I asked her if she thought I could go bare-headed. She said she didn't mind so I didn't buy a wig. To go out I wore a scarf (I had 3 different ones depending on the colour of my clothes) as I realised that my head was cold when it was windy and also to protect my skin from the sun as it is strongly advised not to expose yourself during the treatments. I bought a beige hat after the operation because I had lost so much strength in my right arm that adjusting and tying a scarf was almost impossible. I am fortunate to have an extraordinary daughter who would stroke my head and comfort me through it all.

I didn't mind people's stares because being obese since I was a teenager (I even weighed 122 kilos before cancer and only 97 after; now I am between 105 and 110), I had already gotten used to dirty looks a long time before. The worst was my emaciated face. 

What type of mastectomy did you undergo?

I had my right breast removed entirely, but also a little more skin than the one covering the breast (because cancer cells had spread to the skin), as well as the lymph nodes.

As I had a large breast (I was a 50 DD) I also had to have a breast reduction on the left.

You endured a number of complications following this operation, can you explain them to us?

You should know that I was hospitalised for a total of 9 1/2 months. The difficulties began during the preoperative chemotherapy.

At the end of September 2011, I was hospitalised in intensive care because I was dehydrated, malnourished and anaemic. When I returned home, my daughter told me that when she left for school in the morning, she was afraid of finding me dead when she came home in the evening. After the October chemo, I was taken by ambulance to a follow-up care centre where I stayed until Christmas (2 months, during which I never saw my daughter because it was too far away and too complicated for her to come alone).

During this stay, I was put in isolation twice for several days because I didn't have the necessary immune system defences. These 2 periods were difficult because I was used to eating in the cafeteria (except when my condition forced me to stay in my room) with other patients who were not all cancer patients and who were of all ages. This I really appreciated because it was not a hospice. In addition, there was a garden and a chapel, as well as a forest (right next door), which made the place even more pleasant.

When I lost my big toenail and all the others turned yellow, split and streaked, I was able to rely on the staff to take care of the problem. When I had to apply a dark varnish over a layer of clear varnish (a chore for me who wasn't even used to using make-up!), I was able to call in a socio-aesthetician (a free service offered by the Curie Institute) who looked after my fingernails and toenails during the chemo session. She was a lovely woman. At the follow-up care centre this service did not exist but I was able to have a pedicure because I had to watch for the regrowth of the nail on my big toe, which was not without difficulty. The others were difficult to cut because I had no strength and they had become very thick.

I was allowed to spend the Christmas and New Year holidays at home before I was readmitted on the 2nd January 2012 for surgery on the 3rd. I stayed there for a few days before being sent to an aftercare centre where I stayed until the 16th of August.

Your difficulties nevertheless continued...

During this period I returned to centre many times for chemo sessions and because I was having trouble healing. In fact, I had a staph infection twice in the wound. The first time I just needed to have it thoroughly cleaned because it was caught in time. Unfortunately, some time later, the wound had to be reopened, under local anaesthesia, to clean the wound before closing. Afterwards, the nurses monitored the scar either specifically or before or after my chemo session depending on how it had developed.

And then one fine day (not so much, in fact!), the stitches gave way. I ended up with a hole in my breast; strangely enough, it wasn't very painful and, most importantly, it didn't bleed, which my brain had a hard time grasping. The doctors described this phenomenon as "separation of the layers of the epidermis". I became an attraction for the doctor and his students who came once a week. So many people saw me shirtless during those long months that, despite my modesty, I finally got used to it and answered the questions I was asked as if everything was normal. Sometimes I was a little moved when I spoke of all these adventures but sometimes I was so detached that I felt like it wasn't me talking.

I also returned to hospital when the decision was made to do a skin graft. Two surgeons had to be brought in. The one who had performed the mastectomy and one of her colleagues. A rectangle of skin was taken from my right thigh and grafted to the site of the missing breast. The operation was a success but because of the genetic connective tissue disease that I didn't know about at the time, the graft didn't take.

A few days later I went back to the OR to have the graft removed. It was all crumpled up and dry. Afterwards, to dry the wound and help it heal, I was given a Vaccum-Assisted Closure. It's a kind of suction machine.

The radiotherapy that you were supposed to undergo was therefore delayed. What was your state of mind?

With all these incidents along the way, the radiotherapy had indeed been delayed because the scar had to be perfectly closed in order to do it. I think that was what stressed me the most at the time because I was afraid that the cancer was not totally and definitively eradicated. As I met many patients during those months of hospitalisation, some of whom had faced a recurrence, I was afraid that I would have to relive this nightmare. For the rest, all the carers were reactive each time a new problem arose, so I was quite serene. I remember that various people were surprised that I kept smiling despite the circumstances. I would say that the people I met were in no way responsible for my health concerns, on the contrary, they were trying to save my life as much as possible.

The health care team at the clinic was attentive. I was followed by an occupational therapist, to regain some mobility in my right arm, and a physiotherapist to regain some muscle tone. Moreover, the doctor didn't hesitate to take advice from the hospital or even to send me back there if necessary.

At the time, I was very tired from all the round trips to hospital. So I had lunch in the cafeteria where I made friends with various patients, but I had dinner in my room. Colleagues would come to see me and bring me sweets. So I could invite some patients to have tea in my room.

I kept in touch with a nurse's assistant from the clinic who regularly checks up on me, by text message or phone call, and who visits me 2 or 3 times a year.

The most difficult thing to cope with in the closed environment of the follow-up care centres is the death of a patient, which leaves a big void, because we see him or her every day, so much more than our family. Between patients, we also talk about painful subjects that we don't want to talk about with our loved ones because we don't want to worry them or because they wouldn't understand us. Two women died after I returned home, while I was still in contact with them. Sometimes I felt guilty for being alive, especially with all the possibly fatal events that I had encountered. It was by taking care of my sick daughter that I was able to get back on track..

Why did you choose to undergo breast reconstruction? Weren't you afraid of being operated on again after all the complications you had had?

Of course I was, I was extremely anxious at the thought of having surgery again. I even told myself that the worst thing would be to die during or after the breast reconstruction when I had survived the cancer. But my daughter started having health problems as soon as school started in September 2011. She repeated a year and stopped school before she entered her final year because she had to be hospitalised twice in 2013 and twice in 2014.

On 3 September 2015, I accompanied her to her consultation with Professor Hamonet, a specialist in Ehlers Danlos Syndrome (EDS). At the end of the appointment, he told me: "You have it too". He wrote a note for my new doctor (I changed when I found out that he didn't believe my daughter was seriously ill) to prescribe me everything he had prescribed for my daughter. I quickly explained to him the different problems I had encountered during the fight against cancer and mentioned my long absence, as this type of rare disease is often triggered after a death, parental divorce or any other physical and/or psychological shock. He told me that because the injuries I'd had because of my balance issues (which had causes numerous falls on the stairs or even on flat surfaces), it was preferable for me to opt for breast reconstruction on condition that I ruled out implants and informed the surgeon that I had EDS. So I made an appointment with the surgeon recommended to me by the hospital and the reconstruction was done in November 2015 with LAT flaps. Unfortunately the troubles were not over as I had to have two punctures because of a pocket of liquid that formed in the empty space, and this twice in the following months. Around Christmas 2015 I went to A&E because the scar on my back (where the samples were taken) had become infected.

Saturday, October 6, 2018, I had an ultrasound scan of my back which showed that a pocket 1.5 cm deep (in places) and 15 cm high had formed again. The radiologist refused to perform the puncture because, according to him, the risk of infection is too great. Furthermore, he added that it will happen again. Yesterday my GP wrote a note to the surgeon. I need to make an appointment with him as soon as possible.

At hospital I was told that I had neuropathic problems in my hands and feet and I had specific medication for these pains. In 2015, as it got worse, I went to see a neurologist who ordered a spinal cord MRI because she found that my problems were more serious than those she had seen in patients who had undergone chemotherapy. The examination revealed nothing abnormal. And for good reason, it was the EDS that was responsible for this.

How did you feel after the surgery? What did you think of your appearance?  

To tell the truth, with the complications I'd had, I'd had a bandage and nursing care for a long time. Aesthetics was not my priority at all. I only wanted to get better so that I could go home as soon as possible to my daughter. Being single was also an advantage because I didn't have to wonder how my partner would react or if he would still find me desirable. I met women who told me that their husbands had left them, either while they were in hospital or when they returned home. Luckily I haven't had to go through any of these situations.

I had to buy new bras without underwire and then later (before I went back to work in June 2014) with underwire because I had a little over an hour's journey every morning and evening by bus and underground. I had been approached by volunteers from The Cancer League. They had given me an external prosthesis which I placed in my right cup. As I didn't wear a plunging neckline or tight clothes, I was never embarrassed by my physical appearance.

Has your self-confidence been impacted by all you've been through?

Not at all. During the fight against cancer, all I could think about was getting better so I could go back to my daughter who was left alone when it was the year of her GCSE's, an important year for her as she wanted to study medicine later in order to become a medical examiner. Coming home alive after such a long absence and having to deal with my daughter's health problems, for which I was indirectly responsible, saved me from thinking too much about myself. In June 2014, I went back to work part-time (Monday and Thursday in the office, Tuesday afternoon and Friday at home) so that I could go to the physiotherapist's on Tuesday morning and rest on Wednesday. I was exhausted and in pain but so happy to be back at work and my colleagues were happy for me. Some had managed to visit me during my many hospital stays; others had kept in touch by text message or phone; but none of them had abandoned me. Although I was not surrounded by my family, I was able to count on the support of my few friends and colleagues.

Once we were both diagnosed with EDS we were seen by a team (consisting of a physiotherapist, a psychologist and 2 nurses) every Wednesday and Saturday afternoon. We were lucky enough to make friends with another mother and daughter pair so much so that the physiotherapist suggested that we do the Saturday session together. Since then our two daughters have been friends. Talking with EDS patients and caregivers who know about the disease has been beneficial for both me and my daughter, both physically and mentally.

What advice would you give to patients facing a mastectomy?

Maybe if I hadn't been an overweight secretary and single mother I might have seen things differently, but my priority has always been to stay alive so I can go home and look after my daughter. I didn't want her to think I had abandoned her. This didn't stop me from wishing that I would die in my sleep hundreds of times but strangely enough in the morning I was happy to be alive and I would attack the day with as much zest as my condition would allow.

Some people said I was very brave but they were wrong. I was scared out of my mind wondering how I would cope with the next chemo, how the mastectomy would go, what could happen to me that could be worse than having to fight cancer and staph at the same time, if the transplant would work, when the radiotherapy could finally start...  It was a constant fight against the disease but also against the anxieties it causes. You have to also arm yourself against bad medical news, but also against the reactions of certain relatives who may distance themselves or even abandon you, against the "advice" of people who know someone who has undergone this or that operation and/or followed this or that treatment, against the looks of others, against certain comments made by relatives or the medical profession.

A final word?

I am not ashamed to admit that I cried a lot but, during these long months of anguish, I was also lucky:

• to see surgeons, doctors, nurses, nurses' aides doing everything possible to help me heal, despite all the complications;   
• to meet some of the patients and the nursing staff to the point of staying in contact with some of them after leaving the hospital and centres;
• to talk and laugh a lot: with patients, with the nursing staff, with the taxi and ambulance drivers who transported me, with the service staff, with my rare visitors, during the collective occupational therapy sessions..

When I heard my daughter say "I love you very much, my dear little mummy", I thought I was very lucky. And yet I went for months without seeing her, but it gave me the strength to fight.

A huge thank you to @Cacalou‍ or sharing her story with sincerity. Don't hesitate to leave a comment to express your support, ask your questions or talk about mastectomy!