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Voices of Women

Facing cervical cancer, human papillomavirus and its consequences.

Submit your testimony


30 ans, un job satisfaisant, un mariage à l'approche, une volonté de fonder une famille, une sensation d'épanouissement et de réussite, et puis un matin, on ne sait pas pourquoi, tout s'arrête.

Le 4 juillet 2012, après avoir fait un check-up complet dans le but d'envisager une grossesse, je reçois une lettre de mon gynécologue me demandant de faire une biopsie de toute urgence. Le mot "biopsie" provoque déjà une angoisse. 3 jours plus tard, une colposcopie, quelques jours après, CNI III, dysplasie de haut grade ! Mots bien étrangers à mon vocabulaire... Je suis prise en charge par un gynécologue-cancérologue, opération planifiée la semaine suivante... A ne plus rien y comprendre, le 17 juillet, soit 4 jours avant mon mariage, je me retrouve sur une table d'opération, mon conjoint prend la poudre d'escampette, annule cet événement d'une vie préparé depuis plus d'un an ! Pour de nombreuses raisons, avec cette maladie comme élément déclencheur ou peut être simple hasard. Résultats de l'opération : cancer micro invasif, carcinome intra épithéliale s'étendant sur 11 mm le long de l'endocol (pas besoin de relire mes résultats, ils sont gravés dans ma mémoire).

C'est à ce moment qu'on réalise que la vie est incroyable, qu'on ne peut jamais prévoir l'avenir, que personne n'est maître de son destin. Et puis on se relève, on dépasse ses angoisses, sa tristesse. Finalement ce n'est pas si grave, ce qui est difficile à accepter c'est que l'on touche à son intimité, à sa féminité, à sa vie de femme, à sa fertilité... La peur de ne pas pouvoir un jour devenir maman. Et puis les jours passent, les mois défilent et aujourd'hui j'ai la chance d'avoir été merveilleusement bien entourée, par un père fantastique, une famille en or, des amis que tous rêvent d'avoir, des collègues d'une humanité insoupçonnée... et je revis, j'ai surmonté et assumé cette brutale rupture, ce sentiment de perte de toute féminité, j'ai continué à suivre scrupuleusement les recommandations des médecins et la vie me fait pleins de jolies surprises, des rencontres inattendues, des projets inespérés...

Je ne sais pas de quoi demain sera fait, je ne sais pas si mon désir d'être mère sera un jour accompli, mais ce que je sais c'est qu'on se sort de tout et la tête haute, et que "j'ai décidé d'être heureux parce que c'est bon pour la santé" (Voltaire)...

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Mi capita spesso di lasciarmi sedurre dalle meraviglie del creato: la delicatezza di un fiore, la maestosità di certi panorami, l’armonioso alternarsi di sole e luna. Mi piace godere della natura e delle occasioni che ci offre quell’immenso dono che è la vita.

E ai tempi nostri il bello della vita è che ognuno di noi la possa vivere come crede fino in fondo. Oggi più che mai le persone hanno gli strumenti per affrontare le opportunità o gli imprevisti che capitano di volta in volta. La comunicazione è globale, la scienza da risposte un tempo impensabili, la medicina continua a fare passi da gigante. Senza entrare nelle questioni che riguardano l’altra faccia della medaglia (cioè il negativo che il progresso trascina spesso con sé), penso che l’uomo moderno abbia una possibilità unica e nuova: quella di prendere in mano la vita e di scegliere come gestire la propria salute. Certe malattie sono subdole e si manifestano con sintomi evidenti quando è molto (in alcuni casi troppo) tardi, ma prevenire è meglio che curare! E’ una grande banalità come dicono tanti? Ho sperimentato sulla mia pelle, perché ho scelto di fare alcuni esami con regolarità, pur non avendo alcun sintomo o disturbo, che fare prevenzione significa salvarsi! Salvarsi la vita ma anche evitare tante sofferenze e dolori, momenti di sconforto, interventi invasivi o mutilanti che sarebbero stati necessari qualora non avessi saputo per tempo cosa stava accadendo al mio corpo.

Chi può sapere se e quando le proprie cellule possano degenerare? In realtà potrebbe non accadere mai ma a me è successo e l’ho scoperto in tempo, talmente in fretta che sono guarita con poco e ad essere sincera non mi sono quasi accorta di essere malata.

Il cancro del collo dell’utero, causato dal papilloma virus, viene diagnosticato dopo che sono avvenute delle modificazioni degenerative di alcune cellule. Ci vuole del tempo però prima che diventino masse tumorali. Io so solamente che cerco di condurre uno stile di vita possibilmente equilibrato con un minimo di attività fisica e un buon regime alimentare. Ogni anno mi sottopongo a visita ginecologica e faccio il pap-test.

Nel novembre 2009 il risultato del pap-test non è stato come sempre “referto infiammatorio”, bensì “cellule squamose atipiche di significato indeterminato”. Parole grosse, sconosciute e inquietanti!

Il mio ultimo pap-test risaliva a 11 mesi prima ed era normale, ma nel frattempo qualcosa stava cambiando. Quindi di qualunque cosa si trattasse era solo all’inizio, curabile con poco ed io certamente non ero spaventata, anche perché ero in condizioni generali di buona salute. La ginecologa mi spiegò che dovevo affrontare un esame ulteriore e poco doloroso, la colposcopia, ed aspettare il referto istologico. Qui si evidenziava la presenza del papilloma virus. Dunque mi sono sottoposta ad un piccolo intervento in anestesia locale assolutamente indolore, la elettroconizzazione. Il risultato istologico confermava l’assenza di qualunque tipo di alterazione. Quindi già con la colposcopia era stata asportata tutta la parte “malata”!.

Il mio iter ora prosegue solo con controlli semestrali e non riesco quasi a rendermi conto del rischio corso. Questo perché non ho sofferto, l’ho scoperto nello stadio iniziale e quasi “per caso”. Ma in realtà non si trattava di “un caso” perché avevo scelto consapevolmente di fare prevenzione.

Riuscivo a guardarmi allo specchio parlando con il pericolo scampato dicendogli ad alta voce: “Ti ho annientato prima che tu potessi fare del male a me ed alla mia famiglia!” (perché anche le persone che ci sono accanto sono inevitabilmente coinvolte).

E forse non si trattava nemmeno di vero “prevenire” ma della possibilità di accorgersi il prima possibile che qualcosa si stava modificando e degenerando. Con il pap-test si possono monitorare eventuali variazioni cellulari ed agire tempestivamente di conseguenza.

Ma in più oggi c’è una vera prevenzione e grande regalo che possiamo fare alle nostre figlie: è la vaccinazione contro l’HPV. Nel momento stesso in cui ho saputo di esserne “vittima” ho scelto per mia figlia questa protezione preventiva, pur conoscendo il margine di rischio che i vaccini hanno sempre. Magari darò l’impressione di essere una persona che parte per le crociate, ma ad ogni donna con cui mi capiti di parlare di questo argomento racconto di essere stata solo sfiorata dal male e di non avere sofferto solo grazie alla scelta di sottopormi ad un esame di routine.

Certo la speranza e la determinazione a vincere il cancro devono sostenere ogni donna anche quando venisse a conoscenza di questa malattia in uno stadio più avanzato. Ma se siamo veramente persone dentro il nostro tempo non possiamo che cogliere l’opportunità di sapere presto.

Qualcuno mi ha detto: “sai, io sono fatalista, succeda quel che succeda tanto di qualcosa dovrò pur morire….”. Rispondo che questo non è essere fatalisti ma incoscienti. Vogliamo farci sorprendere da una malattia che si manifesti quando sarà troppo tardi e ci sarà compagno solo il rimorso?

In fondo è come essere in un meraviglioso giardino, poterlo

ammirare godendo della vista di una bella natura e voltarsi a guardare ostinatamente solo il muro decrepito che lo circonda.

Reference

"I began getting Pap smear exams, and everything was normal at first. Then, one day they found something, and said that there was a severe growth present... Pro Mujer helped me with the private procedures, and I did not have to pay for my surgery at the public hospital. This was a huge benefit for me. Without this support, it is very difficult to pay, and you usually have to wait a long time in between the payment and procedure. I made my payment on a Thursday, and had my surgery the following Monday. It was very quick... Everything is better now. I even feel brave enough to talk about it in our Pro Mujer group meetings when there are women going through similar situations. Pro Mujer staff and other clients tell women to come to me about these types of problems because many also share the same fears I had. I try to educate them about my experiences because it is something that could happen to them in the future, and at least that way they learn about it and are prepared... Difficult issues become easier when you bring them to the surface. You feel liberated, and can then go on to help others. Now, I always tell women-get your Pap smear exams, take care of yourself."

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Allison Hicks Speech to the Global Summit on Women May 2009 Thank you so much for inviting me to speak. It is inspiring and invigorating to be surrounded by so many women working to strengthen and improve the world for women!

My name is Allison Hicks and I am here to tell you about my experience being diagnosed and surviving cervical cancer. I‘ll tell you how that experience led me to create The Hicks Foundation, a nonprofit dedicated to eradicating cervical cancer through education and medical resources. At the age of 29, I was diagnosed with advanced cervical cancer. I had regular medical care, but an irregular pap test went undetected and by the time I began showing symptoms the cancer had progressed considerably. To say that my diagnosis came as a complete surprise would be an understatement.

On that day, my life was completely disrupted and irrevocably changed. Before I was diagnosed, I truly didn't know the depth of change that cancer brought. In fact, when I received the call from my doctor, I wasn't alarmed, I assumed my treatment would be quick and without much inconvenience. My doctor's response was sobering. She said "This is a really big deal. The best hope you have is that you survive your treatments. Hang up the phone, call a friend, and have someone come over immediately because you are about to start a huge process.” I am a young, single woman. I work as a doula, helping many women give birth and care for their little ones during those first few weeks of life. My daily work had reinforced my own dream of motherhood. At times it was maddening to realize that as I worked helping women through this stage of life, the cancer was quietly stealing this stage of life from me.

My cancer had progressed so that I needed a radical hysterectomy to survive.

Treatment meant that my entire reproductive system was removed. What I thought would be a brief stay in the hospital turned into three weeks, with multiple surgeries and complications. I left the hospital with an open wound [[show on your body]]. I had a pump attached to my body and a daily visit from a nurse to clean the wound. Surviving became my new job. Like anyone preparing for work, I packed my lunch each day and drove to the hospital for daily radiation treatment. Then, every Tuesday, I went to chemotherapy. I spent hours sitting in a lounge chair in a big room with other patients. I tried to relax while being pumped up with chemo cocktails, steroids and anti-nausea medication. I spent the rest of each week trying to recover. Through everything, I had great support and found ways to cope with humor and friendship. But the reality of my loss kept pulling me under. The surgeries left me severely disfigured and unable to bear children.

I cannot overstate the experience of having my body change from something beautiful to something that felt diseased and broken. Cancer is a gigantic word. It is big. It is suffocating. It is scary and I felt tiny in the face of it. But as I healed I began learning that cervical cancer is somewhat different. Although it is the second most common cancer in women worldwide, almost every case of cervical cancer can be prevented with regular health care and tools such as the Pap test and new technologies including the HPV test and the HPV vaccine. Unfortunately, many women around the world don’t know about or have access to screening and vaccination. But I rallied around the fact that no matter how big, no matter how threatening, no matter how insidious cervical cancer can be, it is nearly 100% preventable. This was a call to action Hicks Foundation was born.

Eradication took the place of cancer in my vocabulary. It wasn’t huge, or scary. In fact, it felt entirely possible and focusing on helping women help themselves was incredibly inspiring. I wasn’t working to slay the humongous Beast of Cancer. I was working to empower women. One by one, I knew I could reach women. My initial goal for The Hicks Foundation was to raise money to provide free cervical cancer screening for women who had no health insurance. In three short years we’ve had many successes. We have worked with local health care providers to give free care for hundreds of Vermont women at our Free Screening days; we have successfully advocated for state funding for the HPV vaccine through legislation; and we have begun education programs that will help women get health care and learn how to prevent HPV and cervical cancer. We named our education campaign "Mission Possible" because we believe that eradication is within our reach – in my home state of Vermont and across the world. It is entirely possible.

Now, I talk to women, I meet with doctors, I join with advocates and I identify with them, not with cancer.

I now feel anything but tiny. Hicks may be a small non-profit organization in a small city in Vermont, but we have partnered with state and national organizations to eradicate cervical cancer. We see women getting care and taking care and we feel the momentum growing. Recently, we became a partner in the Pearl of Wisdom Campaign, a united, global effort to prevent cervical cancer. This campaign reaches women, healthcare providers, policymakers, and the media to raise awareness and encourage women to access the tools that prevent cervical cancer. As you can see, the Global Summit is also a partner in the Pearl of Wisdom campaign and you each have a pearl to take home with you, to wear in support of cervical cancer, and to share the message of cervical cancer prevention with your friends, colleagues and loved ones. These days, my life is very busy raising money for the Hicks Foundation and working with others to eradicate the disease. I am so grateful that my story can continue to live on in the Hicks

Foundation as a story of survival and one that inspires women to take control of their health care and live cancer-free.

I would love to talk to any of you about how you can join the fight. You can also learn more about the Hicks Foundation at www.freepap.org , and our brochures are here. Join me and the Pearl of Wisdom campaign. Take these messages with you to your families and communities. Together, we can eradicate cervical cancer!

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Something told me that I should go to the doctor for that scheduled screening, I had not been to one for several years.Time flies and now I sit here 1,5 years later with a little candle burning while I’m writing. I was at that time, 1,5 years ago that my journey to ”know life” began, not only for me, but for my husband as well.

Everything started with a cervical smear test followed by another examination, (konisering) and finally the message; ”You have cervical cancer”. After my doctor told me this, I wrote down what he had said on a piece of paper and when I later walked home I thought; how will I tell this to Håkan, my husband...

It was not long until a ”circus” of examinations, tests and scannings followed one another.

Suddenly I was on sick leave and everything felt unreal. I did not feel my cancer at all and usually I only stayed at home from work for severe colds. I didn’t feel ill, I felt like I played truant. I associated the word cancer with my mother who past away in 2004.

Before that, cancer was something that happened to other people. I think I first really understood what had happened to me/us, when I came home from surgery. The first days were horrible. Pain, needles, feeling sick, vomiting, migraine and anxiety all together.

Now it was time to start recovering, I was to learn some things again, and learn completely new things from the beginning. I was supposed to learn how to like myself again … A beautiful little light was lit in all the darkness. They had taken my uterus, the oviducts, a portion of the upper vagina, some tissue around the uterus and 40 lymphatic glands, but, it turned out that the cancer hadn’t spread! Yippie! Love to life!

Finally I got back to work again, all felt weird. I wasn’t the same Anneli that had gone home a few months earlier and that now stepped in through the door at work.

I was a changed Anneli, an Anneli that had felt life. I understood then that I wanted to do something more of it.

I changed my job, started to paint and began practising Yoga again. Nothing is impossible if one only practises a little every day, I have heard someone say. But between all of this I have had time for a depression, thoughts on death, thoughts on children and thoughts on life in general.

We were at a party only a few months after my surgery. One of the conversation topics were chilren. ”Do you have children?” ”Why don’t you have children?” were questions that were asked around. We sat there and just waited for them to ask us. What were we supposed to answer? We didn’t want to spoil the party, but we didn’t want to lie either. Luckily we left before we had the question, it was just too much.

The journey to ”know life” hasn’t been easy and is still today not easy at times. Somehow I am still grateful that I’m on it. I have learned incredibly much about myself. For example, it is not dangerous to stop in life and ask if this really is what I want to do. To get there can be a long road but one has to start somewhere...But do I really understand what I/we have been through? … I don’t know. The way I feel today is in many ways thanks to my husband Håkan. Thank you darling =)

I am sending a portrait I did of myself after I started Yoga again, it symbolises peace to me.

I won’t blow out the candle, I’ll let it shine.

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The incidence of the cervical cancer, in the sixties was around 40 per 100.000 women per year, being now 7 per 100.000 new cases year, in Spain. Fortunately, this previous depressing scenario has change in the developed countries, but still there is much to do in the so called developing countries. It is not my aim to focus in the very important aspects of screening, vaccination or anything which could be useful for detecting cervical cancer in preinvasive stages.

Unfortunately, nearly the 50 % of the advanced cervical cancer will die and each of these women will have a personal tragedy which very often is totally ignored. Let me transcribe, the letter from a patient who died of cancer: “Once upon a time was a young women did not know how to die or may be she did not want to die. But the death was calling her constantly. She was tired, very tired, and reach the conclusion than death will not be so painful. It was not necessary as much suffering, as much no life. I can stand to see life as cycles of chemotherapy, radiotherapy or more and more injections, any sort of explorations, distant doctors. I need more time to die. I don´t want more needles going through my body giving me false hopes…it is so difficult to be in departure point, with the best smiling, but broken inside….” This patient commit suicide a month later.

Cervical cancer as any cancer needs much more than science and technology, Needs a human being giving support and love to another human being.

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My name is Flavia Cupsan I am 28 years old and I’m writing you from Cluj-Napoca , Romania regarding a personal problem I have, hoping that you can help me.

Beginning with 2006 I have been to several regular gynecological examinations hoping that, in case a problem shows up, I would be able to discover it in due time.

My results are the following:

2006: PAP II
9.11.2007- ASC-US
21.07.2008 PAP II
28.05.2009: ASC-US cervical injury
19.01.2010 PAP II cervical injury
06.07.2010- ASC-US- suspicion of HPV infection

Following these results I had a discussion with the doctor I’ve been seeing on a regular basis and I asked him if my results showed something that needed special attention or if I had to do additional tests. Honestly, I was worried that my results kept showing ASCUS. The doctor told me that I did not have to worry and that I was as healthy as possible. However, I went to see another doctor who recommended me to do immediately a HPV test and a colposcopy. After the HPV test I discovered that I had HPV type 33 and the colposcopy showed that I had CANCER IN SITU. I did a cervical conization in August 2010.

I would like to know if you colaborate with a doctor who can help and tell me if the doctor I’ve been seeing should have recommended me a HPV test, a colposcopy or other additional analysis in order to avoid surgery (cervical conization). Could we talk about medical malpractice? In order to prevent such an outcome, given the results of the Papanicolau tests and the existence of a cervical injury, should the doctor have told me to do other analysis, more detailed ones, in order to be completely sure that I have no health problems? Could you help me by indicating some articles/studies which could help me find an answer to these questions or even by giving me your opinion? I’m also considering the possibility to initiate a legal proceeding against this doctor, in order to prevent such situations from happening again. Romania is ranked 1st in Europe for the number of deaths caused by cervical cancer, mainly because of such situations of negligence.

Our legislation stipulates that the opinion of other specialists in this field is also necessary in order to prove that indeed more care and attention should have been shown by the doctor. Unfortunately, I will not be able to ask the help of a specialist from Cluj ( Cluj-Napoca is the most important oncological centre in Romania ) because the doctor whom I accuse of malpractice is very well-know one.

I am also interested in finding a doctor who si willing to testify on my behalf in a law suit against this doctor and I am also willing to pay all the costs that a trip to Romania may include.

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The Portuguese Cancer League is committed to the prevention of all kinds of cancer that can affect men or women in all ages and to help the ones who are suffering from cancer and their families.

Concerning this particular cancer - cervical cancer - the Portuguese Cancer League aims to avoid the death by this disease in women form Portugal – in average, every day, a woman in Portugal dies from cervical cancer. According to the President Professor Carlos de Oliveira "if we’re able to inform and make all women aware of the importance of both primary (vaccination) and secondary (screening) prevention, we can really stop most of the new cases of invasive cervical cancer, as well as other serious diseases caused by HPV." With these words, the Portuguese Cancer League would like to appeal for the help of women who have had cancer as a consequence of an HPV infection. Through their testimonial, better than anyone, they can explain what it is like to have a serious health problem as cervical cancer and can, at the same time, give hope to the ones that are suffering from it presently.

Thank you all for sharing this goal with the Portuguese Cancer League!

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A 22 ans, me voilà partie un jour de mai pour mon rendez vous annuel chez le Gygy, petite auscultation, petit frottis et hop le tour est joué je m'en vais retrouver mes amis en lui disant à l'année prochaine, pensant que le frottis serait forcement sans soucis.

Quinze jours plus tard réception des résultats et voici les mots qui me sautent aux yeux: " Dysplasie, lésions, haut grade et tumeur " Pardon ?? Mais qu'est ce que c'est ce charabia ?? Alo donc gygy, il y a un soucis ?! Ma gygy me confirme qu'il y a un petit soucis mais sans trop d'inquiétude elle me prescrit quelques lasers à faire. Me voila donc partie pour l'hôpital, rendez vous avec Le gygy, oups! Un homme pour faire ça? haaaaaaaaaa il y a t il un trou de souris par là? S.O.S. ! Mais non, allez zou courage !

De toute façon ce n'est que son métier et vue son âge il a du en voir une belle brochette alors une de plus une de moins ... Nous voilà donc dans la salle de laser la séance se passe sans problème, il m'explique que le papillomavirus est contracté par toutes les femmes à leur premier rapport mais que beaucoup l'élimine naturellement, il s'agit aussi d'une MST et me parle des différentes étapes d'évolution (tumeur, cancer du col de l'utérus). Une MST, comment est ce possible quand on a qu'un seul partenaire depuis quelques années? Petite explication avec le partenaire en question, Mr fidèle & sans reproches, belle maman dans la partie qui confirme que ça peut s'attraper par des toilettes pas très hygiéniques...Dans le doute l'absurdité de l'amour & de la jeunesse.. J'y crois.

Après les lasers je contacte ma Gygy qui me dit d'attendre la cicatrisation avant de faire un contrôle 6 mois après. Mais 2 mois plus tard je reprends rendez vous car je sens que quelque chose ne va pas, une petite intuition féminine sûrement...Rendez vous en septembre : RE-frottis et là RE-problème Mme la tumeur est toujours là ! La gygy prend conscience d'un coup que le traitement n'était peut être pas adapté... Alors là bien sur j'ai dit "au revoir Gygy tu es le maillon faible !" Je me suis donc tournée vers Le gygy qui m'avait fait les lasers, j'obtiens un rendez vous pour Noël. Commence alors la cascade de biopsies et colposcopies en pleine période des fêtes de fin d'année. Les fêtes se passent dans la joie et bonne humeur car quoi qui se passe le sourire reste le maître mot !

Puis janvier arrive et les résultats tombent : les lasers n'ont pas brûlé la tumeur à la racine, du coup Mme a continuée de s'installer bien tranquillement et a doublé de volume. Verdict : Conisation immédiate Mademoiselle & Bonne Année biens sur ! No soucy No panique je suis la plus forte & bien entourée alors c'est pas une ptite conisation qui va me faire peur ! Mais au fait, Mr Gygy c'est quoi une conisation ?? Parce que des mots savants il y en a tellement dans ces moments là qu'on a l'impression de ne plus savoir parler français! Il m'explique alors qu'il s'agit d'une intervention durant laquelle il découpe au laser la tumeur avec précision, petit affolement : "est il toujours possible d'avoir un enfant après cette opération?" Mr Gygy me rassure : c'est une méthode au laser mise au point depuis quelques années qui permet de préserver le don que l'on a demettre au monde une vie. OUFFF ! Me voila donc armée pour affrontée cette opération bien entourée. En avril : partie finie ! ma conisation c'est bien passée ! S'en suit une petite semaine pour se rétablir entourée des meilleurs : Maman, Papa, les zamis, de belles fleurs et du chocolat !!!

Aujourd'hui je suis en pleine forme, je fais des frottis réguliers pour surveiller, car même si la bataille est gagnée il ne faut pas oublier que Mr le cancer peut débarquer.

Alors même si vous aimez l'homme qui partage votre lit et que vous êtes sur de vous ne négligez pas les éventuelles probabilités de dérapage de Mr qui peuvent en plus de vous faire mal au coeur, vous détruire la santé ! Restez vigilantes, respecter et protéger votre corps et votre vie ! Faites vos frottis régulièrement pour éviter de vivre ces moments là qui ne sont pas toujours facile à affronter et passez le mot à vos amis, vos proches et vos enfants.

Quand à vous Messieurs, je ne jugerais pas les dérapages éventuels mais pensez aux MST et protégez vous !!!

Reference

I was alone when I got the news of having cervical cancer. I had the Pap test and my dr. asked me to arrive to get the results and said it didn't look good. I asked her to explain to me how bad it was, what does it mean, do I have cancer? Could it be? She said that everything can be, now I know and realize that she probably knew already from the first visit. When I left her clinic I called my husband, mother and sister, I told them something was wrong, everyone assured me, you'll see that in the end everything will be fine. Who would believe that I who am normally very healthy would get a disease that can be very destructive. I'm taking care of myself, I'm young, still of childbearing age, it can not be!

To the meeting with Dr. Siegler Epfraim I brought my sister and my mother, they joined me to hear what the doctor said, to prove to me that it was not true, everything was fine with me and I was healthy.

Meeting with him and being with them was very difficult. It was then that we realized I had the disease, it was not maybe, I was sick and I needed to be treated and move on. It didn't stop there, it was just the beginning. I came out crying, I wanted to be alone, I

cried, I realized that I had a problem and I promised myself I'd get over it, it will not be simple but I'll get over it. My name is Tami Raban, I'm 33, married and mother to two wonderful children, a boy and a girl. Who would have thought it would be so significant that at least I have both sexes, that I gave birth, that I would appreciate what God has given me so far. I got home and shared the news with everyone around and went on a new way, a way of which I know the beginning but not the end. It turns out that the little test, Pap smear, the test that is so significant, if I had this test before I would prevent it all. But I did not know and I'm here to tell and ask every woman and girl to go and be checked, do not say it will not happen to me, I used to believe it will not happen to me, till now I can not believe it happened to me.

If there was a woman who would have asked me to get tested as I ask you to do, I imagine I would do it. Today, I am after hysterectomy surgery 8 months ago, I went through a difficult time, with lots of psychic powers before the physical forces, forces that I do not know from where I got, but I got them. Thank God the surgery was successful, Dr. Siegler Epfraim and Dr. Lavie treated me perfectly, they are very professional doctors that first and foremost give me support and are always there for me. Currently, I am healthy and get tested every several months, there are plenty of fears from the worst, yet I know how to be strong and move on because I know that only there I'll get the strength to continue.

May we all have a lot of health and ... do not forget to be tested!

Reference

Seeta Devi is a 60 year old widow of a refugee from Sri Lanka. She has cancer of the uterine cervix, stage 2 B. She is living in a rented room in a slum colony in Delhi. She has 3 children, one of whom, her son, remarried and does not want to visit her anymore.

Her second son is a drug addict whose wife is the only earning member in the family. The daughter is a widow who works hard to support her own family.

Seeta Devi is receiving palliative support after external radiotherapy and incomplete ICBT failed to cure her cancer. The cost of these treatments also pushed her below the poverty line.

Seeta Devi enrolled with CanSupport as a home care patient in 2004. At that time she was suffering from the side effects of ongoing treatment. She remembered her husband and used to cry a lot. With the help of the CanSupport team she started gaining her confidence and learnt to fight her disease. She also expressed a desire to earn for her family and so CanSupport bought a hand cart for her. Now, every evening she makes savories (idlis, pakoras) and sells them in the nearby market.

CanSupport also helped put her son in a de-addiction centre. He is now free from drugs and she is very happy when he comes to visit her. Her own experience has taught her the value of early detection and so she is the first to remind her daughter and daughter-in-law not to forget to go for there cancer check ups; she does not want them to suffer like she has. Her wish is that cancer detection tests should be a national priority and that everyone should have access to affordable treatment. Emotionally, she feels very strong now and declares: “I do not mind my sisters not visiting me any more, because I have the CanSupport nurses with me.”

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This is a story that has been adapted from the Women’s Stories, Women’s Lives: Experiences with Cervical Cancer Screening and Treatment, a publication of the Alliance for Cervical Cancer Prevention. Prathibha, a 37-year-old woman, lives in Maharashtra State, India. One day she heard from her neighbors that there was a team conducting cervical cancer screening in her area. When Pratibha arrived at her house, she saw two women from a cancer hospital talking to her husband about cervical cancer screening. He gave them permission to explain the procedure to her. They informed Prathibha that cervical cancer was the most common cancer in women in her region, but if detected early, it was a preventable disease.

Prathibha was not sure about getting screened, but the village elder, the panchayat, whose mother had died of cervical cancer when he was 10 years old, had already given his tacit approval, so her husband and mother-in-law agreed. The test was free, and she underwent the test even though she had no symptoms.

Prathibha’s test results were positive for cervical cancer. She was shocked, as she felt perfectly healthy. Further testing confirmed that she had cancer and the doctor advised she get a hysterectomy. Prathibha couldn’t believe that she was in such a dire predicament — going from feeling perfectly healthy to being diagnosed with cancer in a matter of days! She then underwent hysterectomy. While in the hospital, Prathibha talked with another woman who had advanced cancer and was very worried about the future of her young child. It was at this time that it struck Prathibha how lucky she was to get the opportunity to be screened and treated. She said, “These people saved me. They have not only saved a woman but they have saved the mother of a small child. I am lucky that I live in the village of Osmanabad District, which has been selected for this program. I am thankful to these people, who put in so much effort to convince me to get tested and prevent cancer. They saved my life and my family.”

This story clearly illustrates the challenges of women’s lives in low resource settings. It also shows the challenges posed by husbands, mothers-in-law, local myths and fears, and, poor health services that prevent women from being screened for cervical cancer. Many women continue to die from the ravages of cervical cancer. Let us hope that stories such as Prathibha’s will help raise public awareness, and that millions of women will learn to battle a disease that, for the present, they don’t even know they can conquer.

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I am making this statement as I have just undergone an operation for cervical cancer, unfortunately because of radiotherapy; I asked the doctor to remove my ovaries as I was afraid there were metastases in them. I am 36 years old, and the tumour in my cervix was 8 cm in size, because of my morale and will to overcome this disease, I underwent chemo, radiotherapy and curietherapy, with the result that, before the operation, it was just 2 cm in size. I thus support all women afflicted by this disease, I encourage them to fight, morale is needed.

Think about my mother who died from ovarian cancer in 98, my struggle was for me but also for her, in her memory.

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“Madame, I am calling you further to your smear, you need to make an urgent appointment with your doctor ... I am not able to tell you anything further, I am not permitted to do so”. 6 days of anguish, of imagining the worst and finally a “pretty” name for a virus which until then I didn't know existed and didn't know the consequences of.

I left my appointment last Friday with the name "papillomavirus" and a feeling of injustice and anger. I read and re-read the result of my smear, mentioning the detection of “oncogenic human papillomavirus”: does oncogenic mean carcinogenic?!? That says it all, the knot in my stomach tightens.

Thousands of questions whirl around in my mind day and night, nightmares populate the few hours of sleep my fear allows me.

I am angry: why me? why that?

Delphine - Gentilly (94) - 38 years old

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I am 57 years of age and since 24 September I have known ... I finally know what my body has been trying to tell me for several months. Relief at knowing but fear of the future.

An unfortunate set of circumstances and my lack of urgency in obtaining a second opinion delayed the diagnosis.

I attributed major breakthrough bleeding to the peri-menopause but other bleeding then occurred.

I made an appointment to see my gynaecologist in February. A smear followed echography and pelvic doppler did not detect any anomaly.

I waited, my head in the sand ... Me, someone who was never sick, I had had 'flu (A or other, I don't know) in June which laid me low for three weeks, and a urinary infection which took me to A&E in August.

Weary of feeling like I was 80 years old, I made an appointment with another gynaecologist in early September, and that's went things started to move fast: smear, colposcopy, biopsy, MRI and 3 new doctors in my address book.

I am in the best possible hands, I am told. I believe it and repeat it to those around me, to reassure myself and those who love me. Telling my children that I had cancer was the most distressing moment. I don’t want them to worry about me while I am not worried ... not in front of them.

This cancer, which is at a fairly advanced stage, must have already been there in February. Why wasn’t it found? Why didn’t I ask for a second opinion immediately? I am angry but I can’t go back in time. Since 24 September, I have been living day by day, I wait for the results of examinations, I wait for the next appointment, I wait for the start of treatment ... and I am afraid.

Annie

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February 10: "Mom has cervical cancer." The world was shattered the day the doctors told us, we couldn't even begin to imagine, or even understand: "It just was not possible."

Yet it was true. And it was our mother, our pillar of strength.

With all the courage of her forty years, she chose to fight. She accepted everything: the mutilating surgery, the "burning" radiation, the isolation, the deprivations. She gave up everything in order to be cured.

What she was and what she loved.

She also learned to savor each moment of happiness, each instant of freedom.

Mother was brave and strong. But she is exhausted now: will she find the strength to continue the struggle?

I'd like to hope that everything will return to the way it was.

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You most certainly have dear ones too, children you love, and you understand Jeanne's anguish. What could be more unjust, more dreadful than a young mother or a relative diagnosed with cancer?

No one is exempt. Every day in Europe, around 100 women hear these terrible words.

Just fifty years ago, this disease claimed six times as many victims and death was inevitable. Even today, four of every ten women die in the five years following diagnosis.

WACC is mobilized to avoid these situations: the fight against cervical cancer is its essential mission.

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