For the Breast Health newsletter (here the link to register for free) we inaugurate the section “An hour with …”, dedicated to communication “around” breast cancer. The first of our interviews is with Adamantia Paizis: astrophysicist, scientific popularizer and former Italian chess champion. Who has a long personal and family history with breast cancer. She fell ill twice: the first when she was 30, the second at 39. We asked her to take an hour of her time to talk to us about her vision of the “cancer experience”, the meaning she gives to the word femininity, the her choice to reconstruct her breasts relying on plastic surgery on the “first round” and not to do it on the second. Of survival statistics and the message he would like to find in each article. Here we publish some excerpts (to receive the full version it is possible subscribe to the newsletter and request it by sending an email to [email protected]).
We do not start from you, but from this space in which we are trying to build a collective reflection on what communication around breast cancer is. What idea do you have?
“I can’t say I have a global perception, as I don’t have it for many other diseases. I have heard of breast cancer on many occasions, and depending on the sensitivity of the speaker, completely different, sometimes opposite, aspects emerge. There is a communication difficulty that does not depend on the ‘cancer’ topic, in my opinion, but on our inability to be empathetic towards the suffering of others, especially in a world that is moving faster and faster. I have seen what I see elsewhere repeated: each of us speaks on the basis of our own experience – at best – but often without considering who we are addressing to. Then the cancer has such an emotional load that this difficulty is amplified. Because it is difficult to talk about actual healing and because for some, unfortunately, cancer can have a tragic outcome. To tell all this it takes time, while it seems that everything around us invites us to run. For example, when reading time appeared in the newspapers a few years ago, I found it terrible. As if to say ‘hey, sorry, I just steal 3 minutes, do you want to lose them?’. The synthesis risks creating misunderstandings and passing on wrong messages ”.
Breast cancer: when the body heals the mind
by Mara Magistroni, Tiziana Moriconi
Just think of the media case of Nadia Toffa triggered by the phrase “cancer is a gift”
“Exactly: it is obvious that it is not, but the sense is that there can be positive aspects. Not thanks to cancer, but thanks to the way we react to cancer. It also applies to other difficulties in life, such as a dismissal, a separation, a bereavement: they can be times when you look at each other, observe your life to keep what is beautiful and cut away what is wrong. well. But I also remember the response to Nadia Toffa from a mother who had recently lost her daughter to cancer, and who asked her how she could say such a thing. She was right too: the phrase that wanted to convey a positive message caused a pain in that lady. So you look at the two opposite sides from which a stadium cheer arises: are you here or are you there? In reality we are all on the same side. In my case, after the tumor, my life has changed a lot: a part in the negative but most in the positive. Sometimes I think: if I could go back, not get sick and continue the path I was taking … I would still choose to get sick and relive everything I’ve been through. I got sick twice, I had 5 surgeries under total anesthesia, they took away parts of my body, I am still under therapy. But yet. I am aware that I am saying this first of all, of course, because I am still alive. I probably wouldn’t think that if I had a relapse now, if things had gone wrong and who knows in the future. In that case we will have to do the interview again. But right now, in this exact moment, I am convinced of it. I speak for myself and for no one else, mind you: there is no right or wrong way to feel. Here, what would really help in communicating around cancer is the absence of judgment ”.
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What’s your history with cancer?
I got sick in 2003 at the age of 30. I felt this breast lump in the shower. I noticed it because the year before my mother had fallen ill with breast cancer and two years before my beloved aunt who is now sadly gone. So it was in the family, and maybe part of me was paying more attention. Despite this, out of fear, I waited a month before telling my mother, who immediately took me to the oncologist. It was breast cancer. I did a quadrantectomy first, but then they found more lumps and decided it was best to do the total mastectomy. I have had chemotherapy and 5 years of hormone therapy. This was the first round. On this occasion I did the plastic reconstruction because I didn’t have the strength to stop and think if I really wanted to do it. The echo of the cancer was so great that where it seemed to me that I didn’t have to decide for life or death, I followed the wave. And the wave was plastic reconstruction. I did it and it looked great, aesthetically speaking. I could have put on a bikini that no one would have understood, but I was not happy, because that thing there was not my breasts. I expected that once the shape was rebuilt I would rebuild myself too, but it doesn’t work that way, at least not for me. It was like having a cell phone in your pocket that is constantly annoying and you can’t get rid of. I could not sleep on my stomach, when I lay down there was this tower that stood up while the rest of the body fell soft in a natural way. And then, with the passage of time, the pectoral muscle began to give out and there was an annoying glance. The surgeon said: ‘no problem, we’ll pick it up’. Except that this meant another surgery under general anesthesia, which I didn’t want to do ”.
It’s the second time?
“It’s been 9 years and in 2012 I got sick again. I had two or three pimples on the skin of the reconstructed breast and it was the recurrence. They decided to remove everything, even the plastic reconstruction. In retrospect, I find it fascinating to observe my slightly twisted psyche: at the news that I no longer have the prosthesis, I was sorry. ‘But how? – I thought – I’ve been trying to accept this deal for years and now I have to take it off? ‘ In reality, the relapse helped me to get rid of that prosthesis that I would not have been able to get rid of when healthy. Now I have a padded bra on the right side, which also serves to compensate for the weight distribution ”.
Did they offer you the reconstruction?
“Yes, but at that point I had a 9 year baggage of thoughts about my body. I was prepared, albeit unconsciously. So, apart from the first shocked reaction, it took me very little to say no. I once had breasts but now they are gone. Enough, it was time to get over it, my life was not there. I find it sad that the universally recognized way after a mastectomy is plastic reconstruction, as if it were necessary to patch the shape to find oneself. If it is a conscious choice, great, but often it is not and you follow the wave, as I did on the first lap ”.
YOUR BODY
I never wanted a fake breast. And now, instead, I have it
Is it easy to live with this choice?
“It is taken for granted that it is easy to live with the choice made, whatever it is. Instead it is not at all, because the doubts that had assailed you do not disappear. The glance of my body is unexpected, strange, I would say ugly. The gesture I make in the evening to remove the breast and put it away, the fact that I have to be careful to put on any dress that has a minimum of cleavage, the sexual sphere … There is a whole baggage that recurs every day and that it is right to welcome , because if you keep holding it out sooner or later it explodes in your face. It is important to have the courage to ask yourself: are you still convinced of your decision? Because it is a legitimate question and it must not be hidden under the carpet. If the answer is yes, I’ll move on, but if the answer changes, because it can change, then I’ll see what I can do. I often ask myself. In some moments this continuous choice is very tiring, but on the other hand it strengthens me a lot: looking inside and loving yourself are the things that then help you to move forward better in everyday life. I don’t come to tell you ‘ah I’m more beautiful now …’ first of all because I don’t care much, then because my body was more beautiful, or at least symmetrical, as it was born. But it is my body, my temple, and I have found my balance, my voice, aspects that I find much more important and rooted than any aesthetic label “.
Were you still afraid after the two diagnoses?
“Yes, a cancer patient never really gets out of business. Along the way I have had so many false alarms. Some resolved quickly: a few months ago it looked like I had some liver nodules. I made the umpteenth resonance with all the emotional load that this entails, because until you have the outcome and you don’t know what is happening, you don’t live: you are as if suspended … in a noisy way internally. Other false alarms have had a more violent impact. In 2017 it looked like I had an onset of ovarian cancer. Because of the familiarity, my case is studied by the genetics group of the Cancer Institute of Milan, which as soon as it had the suspicion they subjected me to tests. Unfortunately, the nature of the lesion could not be known except by removing it. At that point I removed the ovaries, fallopian tubes and uterus. I did not want to have children, so it was not particularly difficult to decide for the ovaries, because the doctors strongly advised me to remove them, since ovarian cancer can be very aggressive. It was difficult, however, to decide whether to remove the uterus, but in the end the fact that I was tired of false alarms, of continuing to make visits and examinations won. As far as possible I want to live calmly, with all the side effects that this entails. For a former cancer patient, everything suspicious is alarm: you start over with exams and every time years of life are taken away from you. Perhaps this is not much realized. Luckily for me, most of the checks went well, but even then you have to put together a reserve of power in case something goes wrong. It’s a continuous roller coaster ”.
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Returning to the collective narrative of cancer, how would you like it?
“I would like every story, every article, to emphasize that you can be reborn. Often the message passes that you get sick, they fix you and you go back to being the same as before. But no: why make it so hard to get back to where I was before? It would be nice to say that instead you can go much higher. That one can grow, that it is worth it, because the committed energy returns amplified. That after the blow, with all the upsets of the case, you can be a happier person. That you can live very well even with only one breast. Saying these things helps not only those with cancer. Looking back I see that I have grown a lot with the suffering, with the pieces of the body that are missing and with everything that comes with it. I began to hear my inner voice, to shut out the world with its mess, as the good Celentano says. There is always so much to change in us, so as not to be influenced by what others expect and which then becomes our projection. From an emotional point of view, on the one hand I have the abyss of controls and fear, but on the other hand I have peaks that I don’t think I would have been able to reach on my own. At least not so early, maybe at 80 ”.
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