Understanding what is at stake in the screening for and prevention of cervical cancer
The provision of information and guidance, if you have not already obtained this for yourself, is a simple yet life-saving measure.
I am dismayed when the disease affects a responsible woman who has had regular smears. Her doctor has often done his job, and both have been reassured by a normal smear - but it was a false negative result. When the re-reading of previous smear slides is requested, in 50% of cases no abnormalities are found while in the other half they are, but the abnormal cells, of which only a small number are present, are masked by artefacts which hampered the interpretation. This situation, which is nonetheless rarely encountered in women who have kept to a strict and regular screening programme throughout their lives, is due to the complexity of screening by smear which is not infallible - which is why HPV testing and colposcopy can be so helpful.
Similarly, a lesion labelled as benign may have been unnecessarily destroyed leaving no possibility for it to be histologically analysed, yet a cancer already existed and continued to develop. This situation remains fairly rare as enormous efforts have been made in France to train gynaecologists in colposcopy, a discipline which they clearly like since the majority of them practice it.
In the event of any doubt, they have no hesitation in referring their patients to another specialist or obtaining a second opinion.
So far, we have only described pre-cancers and explained how they are treated. The treatment of cervical cancer is not one of the themes of this book but I would nonetheless like to outline the treatments available. I repeat and I stress once again: do not let yourself be influenced by those around you, a second opinion is sometimes worthwhile and your gynaecologist will inform you and guide you as well as he can to ensure that your care is in the hands of skilled teams. Do not allow yourself to be persuaded by the internet, books or friends, as each situation is different.
Are there any warning signs
Never forget that the disease is asymptomatic for a long time. Only a lack of screening for more than five years together with signs which, although apparent, are nonetheless difficult to interpret, should alert you.
The few symptoms I mention are not sufficient alone to signal the presence of cancer. After all, breakthrough bleeding is not unusual in women. The Pill, an infection, a hormonal imbalance, a fragile mucous membrane, endometriosis of the cervix or uterus and atrophy of the endometrium at the menopause are classic causes of bleeding. But bleeding, occurring in particular following sex in a woman who has not had a gynaecological check-up for over five years, is very suggestive of cancer. Likewise, slight discharges happen all the time. Infection is the main cause, but a regular, bloody discharge should prompt you to arrange a check-up.
A lot of cancers do not show any symptoms. Many of you only consult a doctor if you have a symptom or a disease, which is regrettable. In contrast to the Scandinavian countries or the United States, the culture of Latin countries with regard to prevention can be summarised thus: “If I am not ill, I do not need a doctor,” which runs counter to the principle of prevention. This is the objective of screening and - in the near future - preventive papillomavirus vaccination. These are the messages which we must continue to communicate.
The stages of the disease
For years, the various stages of development of cervical cancer have been described. This is useful in a number of ways: treatment and prognosis will differ depending on the stage of the cancer.
There are four stages of cervical cancer. Without going into too much detail, the more the abnormal cells spread away from the site of original cancer, the more advanced the stage of the disease.
Stage I concerns the cervix itself. Stage II means that the cancer has increased in size, spreading to other nearby organs such as the vagina. In stage III, the cancer has spread beyond the nearby organs but is still only found in the pelvis (pelvic organs), for example the lymph nodes, which delay the diffusion of cancerous cells. In stage IV, the cancer has gone beyond the pelvis and contaminated, for example, the liver, the lungs or the brain.
How does cancer spread?
Because of their anarchic division, the tumour cells have particular abilities which normal cells do not have, such as being able to split away and spread into a different part of the body. First of all the spread is from the epithelium towards the sub-epithelial tissues, called micro-invasion, i.e. where the cells penetrate less than 3 mm beyond the epithelium. At this stage, the surgical removal of the abnormal zone by cone biopsy is generally sufficient to ensure complete and effective treatment. But if the cells continue to progress, they reach their first relay point, namely the lymph nodes. The closest lymph node chains are those of the pelvis, which are followed by the abdominal lymph nodes further along the major blood vessels. The lymph nodes then start to swell and this is why, before any treatment, an MRI is necessary to identify the spread of the disease. It is important to know that, just as roads link towns and villages, the lymph nodes are connected by a lymphatic system. Once the lymph nodes have been invaded, the abnormal cells can reach distant tissues and proliferate: these are called metastases. This speed of progression is variable but, in cervical cancer, the younger the woman, the faster it is.
This is the name given to the very early stage of cancer, called 1A1. The term micro-invasion means that tumour cells are observed in the histological analysis of the cone biopsy, just a few millimetres (1 to 3) under the basal membrane. At this stage, the lymph nodes have not been affected since usually cone biopsy has enabled this early cancer to be treated effectively. However, it is not always possible to be certain that the lymph nodes have not already been invaded and this is why, if the patient does not want more children or if the woman is post-menopausal, hysterectomy is proposed.
On the other hand, if the woman is young and wants to have children, attentive and careful follow-up is necessary.
When the abnormal cells have invaded the sub-epithelial tissue to a depth of more than 3 mm, cancer is already present. Before any treatment, it is important to determine the spread of the disease: is the cancer located solely in the cervix or has it migrated elsewhere? An MRI, together with a clinical examination, is crucial, as it enables the precise dimensions of the tumour to be measured in the cervix and its spread into the nearby organs - vagina, uterus, ovaries - and the other organs. It will also identify any spread into the lymph nodes of the pelvis and those higher up, along the aorta. Sometimes, cystoscopy will be carried out to examine the bladder wall and check for any spread of the cancer there.
Radiotherapy, surgery and, more recently, chemotherapy are the usual treatments for cervical cancer. Radiotherapy, surgery and, more recently, chemotherapy are the usual treatments for cervical cancer.
The procedure consists of carrying out a total hysterectomy (ablation of the uterus) with removal of the ovaries, the lymph nodes of the small pelvis and those situated higher up. The most classic procedure is called the Wertheim´s hysterectomy. The menopause inevitably occurs following this type of hysterectomy. There are two objectives to the ablation of the lymph nodes: firstly, to remove potentially cancerous tissue, and secondly to determine the stage of the disease. The operation will depend on the spread of the disease, the age of the patient and the characteristics of the tumour. If we find small, localised tumours and if the patient has clearly expressed the desire to have children, more extensive surgery than cone biopsy may be decided while keeping the upper part of the uterus, and also the ovaries, in order to preserve their hormonal secretion. This procedure is reserved for early stage 1A2 and 1B, i.e. where the tumour is less than 2 cm in size and if there is no invasion of the lymph nodes, which colposcopy will confirm. This procedure is called radical trachelectomy. Otherwise, in France, curietherapy and surgery are performed.
In the majority of cases, curietherapy will precede surgery in order to reduce the size of the tumour.
This procedure is generally long since it consists of removing the lymph nodes one by one without damaging the nearby organs such as the bladder or the ureters, the tubes which link the kidneys to the bladder.
Following the procedure, the surgeon will give the patient the results of the analysis of the removed lymph nodes.
Surgery is the treatment of choice for cancers found at an early stage as, in contrast to radiotherapy, there are few side effects, in particular on the sex life. However, if the disease has spread too much or if surgery was not able to remove it all, external radiotherapy, and sometimes chemotherapy, can be offered.
Curietherapy introduces a radioactive source as close as possible to the tumour, while external radiotherapy sends rays remotely to the zone to be treated, aiming at the lymph node chains in order to destroy the abnormal cells. Radiotherapy is generally proposed for stage II cancer, i.e. where the nearby cellular tissue has been affected. It is normally carried out for stages III and IV.
Curietherapy is an internal radiotherapy technique which involves introducing radioactive sources as close as possible to the tumour.
Directly targeting the zone to be treated, a very fine needle is used to place the radioactive source inside the tissue. This treatment presents a major advantage: it enables side-effects in other parts of the body to be considerably reduced. On the other hand, curietherapy requires hospitalisation for about five days. This is because the patient must be isolated by a lead screen and avoid any external contact. This technique is limited to the treatment of certain cancers, including cervical cancer.
Teleroentgen therapy is usually called external radiotherapy. The term covers all the techniques of ionising radiation treatment where the source is at a distance from the tumour, in contrast to curietherapy where the radioactive sources are in contact with the tumour.
This technique generally requires the use of high-energy rays - photons or electrons - diffused by a cobalt “bomb” (cobalt therapy) or a particle accelerator. The high-energy rays irradiate the deep tumours while weaker-energy rays irradiate superficial tumours, i.e. those on the skin or just below it. One session per day, five days per week for several weeks is the basic protocol, although this varies according to the clinical situation and the nature and presumed development of the tumour. Radiotherapy sessions do not require hospitalisation of the patients, who are generally allowed to return home in the evening.
The side effects of radiotherapy
During treatment, efforts will be made to avoid irradiation of the healthy organs. However, despite developments in these techniques, this is rarely possible and side-effects are to be expected. The vagina, bladder and intestines may be affected by the rays. With regard to the digestion, pain, diarrhoea or constipation are often unavoidable. The bladder becomes more sensitive, and cystitis or urinary symptoms are possible. The vagina becomes more rigid, less supple and less lubricated, partly because of the radiation and partly because of a lack of hormones in post-menopausal women, which affects sex. In order to resume a sex life as soon as possible, I prescribe a hormonal treatment and lubricant, in particular for young women.
Over time, the effects of radiation on the tissue can become more marked and the vagina more rigid. It is then worthwhile proposing physiotherapy and vaginal dilation sessions with exercises which you can continue at home.
Chemotherapy can be carried out in conjunction with radiotherapy to increase its efficacy. It involves platinum salts (cisplatin) which potentiate the effect of the radiation. At stages II, III and IV, chemotherapy is generally carried out together with radiotherapy. According to more recent protocols, it can also be given alone, with remarkable efficacy.
Chemotherapy is a term which continues to frighten many patients. It does of course call to mind serious and potentially fatal pathologies, and side-effects which are particularly difficult for women to tolerate, such as hair loss. Looking beyond the distress which this medical term arouses, we should bear in mind that it means, above all, drug treatments, with the objective of destroying cancerous cells by mechanisms described as non-specific.
The side effects of chemotherapy
Nausea and vomiting can occur in the minutes following the administration of chemotherapy and continue for a number of days. If the patient is sensitive to them, drugs in the “setron” class (anti-emetic drugs, i.e. which prevent vomiting) will be prescribed for her so that the chemotherapy treatment can be continued.
Finally, haematological or neurological toxicity may be reported. The decrease in white and red blood cells and the reduction in blood platelets are often responsible for the fatigue and tiredness experienced by patients undergoing chemotherapy. Regular blood tests need to be scheduled throughout the treatment. Transfusions or the administration of erythropoietin - a hormone which has been much discussed in the unfortunate context of drug abuse in sport - may limit the drop in red blood cells, while haematopoietic growth factors can be used to boost the number of white blood cells.
Sensations of cold or constant tingling of the hands and feet are also reported and are due to the neurological toxicity of the chemotherapy. At this point, the doctor will judge how to proceed depending on how tolerable these symptoms are.
Let us not forget that limiting and eliminating these multiple side-effects is the daily preoccupation of numerous researchers. Major progress has already been made with regard these so-called “support” drugs that enable the most troublesome of them to be reduced. Here too, I cannot over-emphasise the importance of the dialogue between the doctor and the patient. Many patients have all too often assumed that it is normal to suffer since they are ill and it is true that, for years, it has been difficult to treat these side-effects. But today, treatments have greatly evolved and patients no longer need to hesitate about discussing the adverse effect caused by certain chemicals on their everyday lives. The fight against pain has opened the way to greater comfort, and the trio of physician, oncologist and gynaecologist ensure that the patient is given the best treatment.
Although it is true that the earlier cancer is detected and treated, the higher the chances of recovery, each case is different and its management needs to be based on a careful examination of the analyses. Likewise, while a physician can be reasonably optimistic about the chances of remission, he will never be able to promise it. Treated early, the chances of recovery are estimated at 90%, but this probability falls to 50% or less if the cancer is discovered late.
As with other cancers, the follow-up must be thorough. Firstly, the patient who has undergone an operation must see her doctor again three months after the procedure, then once every six months for five years, and finally once-yearly. We can never sufficiently stress the need to comply with this follow-up obligation as, the more time passes, the greater the tendency of patients to fail to do so.
The slightest sign of urinary problems must prompt vigilance. If there is any doubt, intravenous urography and pelvic and / or urinary echography need to be carried out.
Concerns frequently expressed
The patients I see who have fallen victim to cervical cancer generally ask me two questions: will I be able to lead a normal sex life? Will I be able to have children?
It is essential to provide reassurance without avoiding the truth. While sexual relations are, of course, problematic during treatment, afterwards certain factors need to be taken into account: the shortening and hardening of the vagina following radiotherapy can cause pain for several weeks or months. In cases such as this, I recommend the use of lubricants or I prescribe a hormonal treatment, which usually resolves the problems encountered. It can be worthwhile recommending vaginal dilation, which the patient carries out herself using a suitable dilator. We need to help the patient formulate her questions, describe her expectations and worries, and prompt her to discuss them with her partner without taboos. Here too, two essential truths need to be borne in mind and stressed: on the one hand, all patients can recover sexual harmony and, on the other, they are not in any way contagious to their partner.
Some of my patients also wonder about whether they can continue their hormone replacement therapy: rest assured - there is no contraindication to resuming this treatment after cervical cancer.
As for the resumption of work, it should, where possible, be gradual, starting with part-time work, for example. Legislation, incidentally, makes provision for a range of changes to working hours in the event of sickness.
Finally, given all these very destabilising upheavals, I generally recommend that women be assisted in their daily life, and that they do not hesitate to consult a psychologist or social worker, or to join an association to share stories and experiences.
The announcement of cancer
Breaking news of a serious disease is always traumatic. It marks the start of a phase in your life in which you have to learn to live with the disease. The concept that you will have of your future will upset you. The pronouncement of cancer conjures up thoughts of death, suffering and long and painful treatment. On every occasion, women are so shaken and so frozen by this news that at first they cannot take in what I am saying. Then, once the shock has passed, the desire for information, the need for discussion and explanations about the disease and its treatment make themselves felt and come to the fore, which in turn ensures better compliance with the care protocol. The National Cancer Institute (Institut national du cancer - InCA) and the League against Cancer (Ligue contre le cancer - LCC) have incidentally proposed an “announcement tool” for use by healthcare professionals.
An announcement tool was brought out by the Cancer Plan and is now used by all cancer treatment units. It is structured around four phases: 1) the announcement and the proposed treatments; 2) medical support and the identification of needs; 3) the key role of the psychologist and the social services; 4) access to support skills and services.
My role is also to adapt to each situation; every case and every patient is different. I take the time to listen to her; I respect her need to know; I accept and I encourage her emotional reactions; I prompt her to verbalise what she thinks. My attitude is crucial, my expression, my look, the time I spend with her, the image I convey, the terms I use and the way I use them. Having empathy and showing that I understand her suffering, providing facts without dramatising them, yet not trivialising the situation and always staying positive is essential so that the patient has complete confidence; she must feel that I am an attentive partner and open to dialogue, someone she can depend on and lean on during her disease. Likewise, the therapeutic calendar calms the patient, sets deadlines and schedules appointments that help her better understand the future.
Naturally, I am not alone in this task: the whole treatment team plays an essential role here.
Real-life experiences and the psychological burden of the disease. Dialogue, communication and understanding.
As every Friday, I arrived early at my surgery and glanced at my appointment book: twenty people today.
“Miss D. is waiting for you,” my secretary said.
I quickly put on my white coat and got ready - paperwork, equipment close at hand, etc. I have Miss D. shown in; she is a young, blonde girl with a slightly melancholy look, wearing deep red, almost black, lipstick.
“How old are you?”
“26 years old.”
“Do you have any children?”
“No, but I had an “unborn” child”.
How many times have I heard this reply: “unborn” because women do not dare pronounce the word “abortion” and they still feel guilty! I look at the result of her smear: HSIL (moderate to severe dysplasia), and explain to her what this means and the examination which will follow, a colposcopy:
“I am going to examine you.”
“Do I need to undress?”
“Just the lower half.”
Miss D. gets onto the examination couch and I carefully introduce the speculum and look at the state of her cervix under the microscope. She is tense, and says something like: “Shit, b*****, that hurts, doctor”.
How many different reactions have I observed during this intimate examination? Some patients say nothing, others pull a face or say something vulgar, like this young woman, while others cry, laugh or even sing. I know that this seems strange but this is my daily life.
“You have a dysplasia 2 cm along the canal inside the cervix. This is not cancer but the lesion will have to be removed.”
While she gets dressed, I dictate my findings onto my dictaphone so they can be sent to the colleague who referred this patient to me.
My work consists of checking, by colposcopy, the condition of the cervix following an abnormal smear performed by a colleague. Other than the patients I have always monitored, I usually see these women as a second-line referral following an abnormal smear or a papillomavirus infection.
In addition to my therapeutic work, I need to start a dialogue to explain what is happening. This is because the patient´s doctor has not always been very explicit; he has simply referred his patient to me after a brief telephone call. Thus, all sorts of dreadful ideas cross the minds of the women in the waiting room. Why a specialist? And what if it is cancer? And what if it happens to me? After all, my aunt had cancer. The spectre of the disease hovers, the tension is palpable, the anxiety is intense, the anguish perceptible, the distress visible. The patient´s nearest and dearest and the internet have probably not helped. These situations may seem to you to be extreme, but they are nonetheless frequent. This is all due to a lack of information or to disinformation as, in the majority of cases, there is no need for this anguish since the situation is completely controllable and a simple treatment, if this proves necessary, will definitively resolve the matter. All this stress and anxiety could have been avoided! This is another reason why I am writing this book: to establish the truth, to inform and to prevent over-reaction is all part of my job.
HPV infection: misconceptions
My second patient, Miss B., sits down opposite me and asks me in a voice tense with anxiety:
“So what is wrong with me? It´s cancer isn´t it? Besides, I´ve looked on the internet and I´ve read up about my case.”
I have a tendency to flare up when women have consulted the internet: they have fallen into a net which will only exacerbate their anguish. The internet is a great tool which I use like everyone else, but knowing how to interpret what you find there about papillomavirus is not easy. Even if some internet sites are really scientifically sound, they are rarely accessible to Ms Everyone. On the other hand, a multitude of “general public” sites have appeared, but they are sketchy and their lack of rigour generally causes unnecessary anguish to women. Forums can also be dangerous. How many patients have told me that they feel the same symptoms - “The same ones, doctor!” - as those expressed by Mrs X about her cancer.
Papillomavirus is certainly a factor which triggers cervical cancer, but it does so in the absence of early detection and treatment. The situation in poor countries, where women are carriers of HPV without knowing it and run a high risk of developing cervical cancer, is not mirrored in our countries. Here women are generally monitored since, if a smear is abnormal, an HPV test can always reveal a high-risk situation and the necessary action can be taken at an early stage. The message is thus completely the reverse; I want this to be clearly understood.
“If you want to suffer, go on the internet,” I could not stop myself from saying, “because no, you don´t have cancer, but a small benign mark on the cervix which I will remove under local anaesthetic in the operating theatre.”
The tension is reduced, the relief is perceptible, the face relaxes.
“Thank you, doctor,” she says. “If only I had known that earlier.”
“So, an operation... How long will I need to stay in hospital?”
“It is a very minor procedure. You arrive at 9 in the morning and you will be back home 2 hours later. It is nothing serious and nothing to worry about as there is a 98% chance of this treatment being definitive and having no effect on your future fertility.”Other questions then follow.
“Did my boyfriend give me this virus? I don´t understand; my last smear was normal.”
I explain to her that the papillomavirus can be dormant for years, that it is not contagious and that it was probably not her current partner who gave it to her. This is because, given the time it takes for a lesion to appear - on average over twelve months - this can happen several years later. During this period, the HPV is dormant and, as the cells do not change, the smear is normal. The man, although he is the vector of the virus in sexual contact, is less vulnerable to it. When we perform peniscopic examinations (exploration of the skin and mucous membranes of the penis, after applying a marker substance such as acetic acid), men whose partners have dysplasia are found to have lesions due to HPV in only 5% of cases. I explain to her that it is not necessary to examine her partner, unless the couple decides otherwise, and that condoms do not have to be used, either.
Women´s distress about HPV usually focuses on cancer, the impact on fertility and the question of transmission. After these explanations, the next level of tension falls.
The experience is sometimes unsettling. Some women feel dirty, betrayed and guilty all at the same time. This guilt, associated with sex, raises its ugly head often. I listen, I reassure.
Complex, phobic or hysterical personalities are, however, more difficult to manage: I therefore direct them to a specialist colleague.
I show the woman to the door; I will see her three weeks later for her procedure. She leaves me in a calmer frame of mind and, when she smiles at me, I read on her face a gratitude which gives me enormous satisfaction and the feeling of a job well done.
Condyloma acuminata: a young person's pathology
I call the next patient: she is a large blonde with long hair who seems at ease. Anaïs is twenty years old; she has been with her first love for 6 months and has the radiant air of someone in love.
I ask her the reason for her visit.
“I have had warts on the labia of the vulva for 3 weeks; they are still appearing and at night they itch,” she explains to me.
I examine her and find warts or condyloma acuminata covering a large area of the labia, extending to the perineum and the anus. I explore the vagina and the cervix and find condyloma there too.
“This is florid condylomatosis,” I tell her.
“How can I have got that?” the young woman asks me.
“You have been exposed to certain types of papillomavirus, called low-risk strains, as they only cause benign lesions in the form of warts which are usually found on areas subject to sexual contact such as the vulva and the external genitalia.”
“Why are they on my anus and cervix?” she queries.
“That can happen as, in this situation, the virus replicates quickly and is transmitted readily during sexual contact, but also by touch and by underwear, even if anal sex has not taken place. The external virus can spread and settle inside the anus where micro-traumas caused by defecation are a favourite site for the penetration of the virus into the epithelium.”
“Why have I got so many?”
“You initially encountered this virus during sexual contact, and as your immunity is not yet mature or sufficient to eliminate it or control the lesions, they are large and extensive. Another woman with better immunity would have far fewer or, in half of all cases, would not have developed any at all.
I can reassure you that the first treatment has a 70% success rate, and this figure rises to 80% after a second treatment. In 20% of cases therefore, a number of treatments are necessary. However, this is not a chronic disease like herpes or hepatitis. In the end, the individual acquires an immunity which controls the situation independently.”
“And what is the treatment?” the young woman asks.
“As there are a lot of warts and they are in several locations, this is what I propose: first of all, a progressive treatment, starting with a cream to be applied locally, called Imiquimod, which is successful in up to 70% of cases. It cannot be applied to the vagina, the cervix or the anus, only the labia and the perineum. The treatment lasts for 4 to 8 weeks. It can have side-effects such as burning or irritation, but this cream has the benefit of acting by reinforcing local immunity, and this is why the rate of recurrence is lower than with other methods of destruction. After that, if condylomata are still present, laser treatment can be given, under local anaesthetic if there are not too many, or under general or rachidian anaesthetic if the warts extend to the anus. After laser therapy, the healing period is 3 to 4 weeks, during which time the area needs to be properly looked after. The anus is a painful site as it is an area which has to be used, so I will prescribe powerful analgesics for you for three weeks.”
“And my partner?”
“He has a 50% risk of having the same thing, depending on his immunity. He may well have contaminated you but eliminated the lesions naturally himself. In one case out of every two, an examination of the penis will reveal warts on the skin or the mucous membrane, and so he would need to be examined.”
“Can I continue to have sex or oral sex?”
“Yes, but with a condom. However, be aware that in your case, the condom will protect your partner but will not protect you as it will move the virus from outside into the vagina and the cervix. And although the mucous membrane in the mouth has a better defence than the genital mucous membrane and is less subject to micro-traumas, I would recommend that you abstain from oral sex during this period.”
In the end, Anaïs did not want to wait and see if the cream would be effective. Laser treatment under rachidian anaesthetic was scheduled, requiring one day´s hospitalisation. When I saw her again, two months later, for a check-up, healing was complete: there were no residual lesions other than 2 micro-warts on the vagina which I treated immediately. I saw her once more 2 months later and everything is normal now. Anaïs got through this, the treatment was effective, she has acquired immunity and so can resume her normal life. I recommended nonetheless that she have regular smears, i.e. once every year as she has a low risk of also being exposed to other high-risk papillomavirus strains, which can be dormant and so without any lesions. While low-risk papillomavirus strains responsible for warts appear within a period of 2 to 8 months after exposure by sexual contact, the high-risk papillomavirus strains responsible for dysplasia can appear after more than 18 months, or even several years.
Cervical cancer: from announcement to management
I have Mrs R., accompanied by her mother and her husband, shown in. She is 41 years old, with curly blonde hair giving her the air of a Venus.
I have before me the results of the cone biopsy which I carried out 3 weeks earlier, following an abnormal lesion (high grade) and a doubtful colposcopy: this is an invasive carcinoma. I do not know if there is a good way of announcing bad news: mediocre ways, painful ways, cowardly ways - yes, but good ones? We doctors do the best we can on the basis of our experience and our sensitivity. We need to find the right words, to understand in an instant the person opposite us, and to announce neither too brutally nor too timidly this news which will shatter her whole life.
Medical ethics dictate that, whatever happens, we must stay on the patient´s side, remain close to her to guide her and support her, help her in reaching the right decisions, manage her suffering and her fear of death, not impose anything on her, and adapt to her, as we are all different in the face of this disease and, behind my role as a doctor, I do not forget that I am also a patient.
When Mrs R. sits down opposite me, I note her grave expression, the anxious look of her mother and the distress of her husband who refuses to sit down and leans awkwardly against the wall.
“I have your results here; they are not very good.”
She looks at me, pale but dignified, and asks:
“I´ve got cancer, is that it?”
“Yes, that is what the result of your cone biopsy indicates.”
“But how is this possible? I had a smear two years ago and everything was normal!”
I am embarrassed, aware of the limits of prevention, as her old smear was a false negative: lesions were certainly present on the cervix two years ago but the smear did not reveal them. This is the situation with at least one third of the cancers discovered.
“Yes, everything was normal, but don´t panic; this is not dramatic: you have a lesion in the endocervix. This is the start of cancer in the cervix and we will heal it. Do you have any children?”
“No, and I don´t want any.”
I ask her this question as, thanks to progress in the field of surgery, it would have been possible to carry out a procedure called a trachelectomy, which consists of leaving the uterus but removing everything around it and also the lymph nodes. This procedure is generally proposed for small localised cancers in the young woman who has not had any children. It is performed by trained teams in a few centres in France.
“So, the question does not arise. I will send you for an MRI scan and refer you to a team who will care for you and in whom I have complete confidence. Radical surgery will be carried out following curietherapy (local radiation of the cervix before the procedure).”
“Will I have chemo?”
“No, I really don´t think so as it is an early-stage cancer.”
She interrupts me, asking:
“But I have heard about a vaccine. In my case, couldn´t that help me avoid the operation?”
“No, the vaccine is preventive and not curative. I´m very sorry.”
She nods and gets up at the same time as her mother. All three of them seem calm but I can guess their anguish and their fears behind this façade. Their lives will never be the same again.
Papillomavirus does not always mean disease
Mrs G. is a large, slightly stout, brunette who enters my surgery with a determined air and sits down unbidden. She immediately asks me:
“So, is it serious?”
“Well, we met a month ago following an unclear smear (ASCUS); your coil was changed three months ago; you have two children and your HPV test which I have here, was positive. Don´t worry; I will carry out a colposcopy, then a biopsy. Please get on the couch.”
Mrs G. settles herself on the examination couch. I do not find any major abnormalities in the transformation zone; she is relaxed and the examination proceeds with no problems.
“Good; I will see you again in three weeks with the result of your biopsy which will probably be normal.”
Indeed, the presence of papillomavirus does not mean a lesion is present; it is sometimes simply the evidence of the asymptomatic and inactive presence of the virus. Virus does not always mean disease. In ASCUS smears, the high-risk papillomavirus is present in 50% of cases, yet only 18% of them have a severe dysplastic lesion (CIN3). If there is no lesion, the virus can disappear spontaneously over the next few months or cause benign lesions visible under colposcopy.
We then need to ensure that a lesion does not develop in the months or years to come.
Mrs G. leaves my surgery smiling, and does not seem to be too anxious.
The next patient, Carole, is a young, very slender, 38-year old brunette. I open her file: she has a progesterone IUD and is mother to three children. She has had an ASCUS smear and the cervical biopsy has revealed mild dysplasia or CIN1, but the lesion is not very active.
“Are you going to treat me, doctor?”
“The abnormality you have is not considered to be a lesion with a risk of cancer. It often involves other types of papillomavirus than strains 16 and 18, found in 70% of cancers. It has a 50% chance of disappearing spontaneously. We could plan not treating you but just monitoring you, as laser destruction therapy is performed only if the lesion lasts for more than 12 to 18 months. I know that women don´t like having persistent abnormal smears even if they are reassured that they are absolutely benign, so you need to comply strictly with the follow-up calendar and conditions I set for you, namely 3 visits at 6 monthly intervals. We could alternate between a smear and a colposcopy, and perhaps an HPV test in the event of any doubt.
The other option is laser therapy immediately, and if the abnormalities persist, further treatment will be proposed.”
“Is there a risk with laser therapy? What are my chances of recovery?” the young woman asks me.
“The laser does not present any risk, and it has about a 90% success rate. If the lesion is persistent (i.e. the lesion is still observable 4 to 8 months after the procedure) or recurs (i.e. a lesion observed in a different location over 6 months after the procedure), a repeat laser pulverisation procedure will be carried out. The follow-up after laser therapy consists of carrying out a smear 6 months later and then continuing at the normal frequency. At this point, an HPV test can also be done and, if it is negative, the follow-up can be carried out at longer intervals.”
“I would prefer the laser therapy; I am very busy and I am not sure I will be able to stick to the schedule you suggest for monitoring the lesion.”
She undresses and is not tense so I have no difficulty in inserting the speculum; I plug in the laser at 17 watts and, in a rapid procedure lasting less than a minute, I pulverise the lesion. No anaesthetic was necessary.
“Doctor, warn me when you are going to perform the procedure.”
I laugh and explain that everything has been done. I then give her a sheet of paper listing the precautionary measures she is to take for the next 3 weeks. We will see each other again in six months for a smear. She leaves me, relieved, with a smile on her lips.
A heavy emotional and psychological load
The anxiety that I observe in my consultations is usually due to ignorance about what can be expected from screening and what an abnormal smear or a positive HPV test means. In addition, the fact that the smear is sometimes called the “cancer-screening” smear only adds to the confusion.
The anxiety commences at the very moment the woman has a smear. Some fear being examined by a male gynaecologist. There is also a great deal of confusion about the concept of cancer and pre-cancer of the cervix. For many women, being symptom-free, not being sexually active, not taking any contraception and being in good health justifies not having a smear. This, of course, reflects an incorrect understanding of screening, as vaginal discharges or bleeding are occasional symptoms of the disease but, unfortunately, only at an advanced stage.
The anxiety is also increased by the - often inappropriate - use of the HPV test and the incorrect interpretation of a positive result by the doctor. In the minds of many women, papillomavirus equals cancer, which is a misconception as over 70% of young women exposed to the virus are not even aware of it and eliminate it naturally.
HPV types 16 and 18 are, of course, persistent more often than other strains of the virus, but the initial lesions are always benign. The fact that HPV infection is a sexually-transmitted disease also generates a sense of guilt and a number of questions about the partner. Let us sweep aside the misconceptions: papillomavirus infection is not a transmissible disease like others, as it is directly associated with the immune status of the subject. As women are more vulnerable to HPV invasion than men, we humans are unequal in the face of HPV.
It is estimated that 7 women in 10 have been exposed to HPV at least once during their lifetime. Even someone in a stable relationship with only one partner can therefore be affected.
The colposcopy consultation can also increase anxiety levels. “If my doctor has referred me to a specialist, something serious must be wrong,” is what the majority of women think. It is for the GP to inform his patient and to reassure her so that the wait for the examination, which can sometimes be a lengthy one, does not cause her undue distress.
Clearly, the position for the examination is not elegant and the patient may not like it, but the examination itself is quick and not painful. Here too, as I have explained in previous chapters, my visual findings will allow me to draw certain conclusions without waiting for the result of the biopsy.
I say: “There is no cancer but just a benign lesion, and here is the treatment expected”, or: “There is no abnormality and this is why the smear was unclear.” Reassurance provides perspective and sweeps aside received wisdoms and misunderstandings.
Furthermore, I know that the operating theatre is over-awing and that the personnel moving around the patient raises many women´s anxiety levels and causes them embarrassment. A few explanations before the examination will help you better understand this event and will be very useful to you.
The wait for results is also a worrying time. This is why, whatever the circumstances, I give reassurance immediately after the colposcopy. If the physician is well-trained, the examination is visually very reliable. If I am in any doubt about the result, I explain why, and if I suspect cancer, I start to prepare the way.
The announcement of cancer will be made with sensitivity and tact.
The therapy plan needs to be explicit; the future disruption to the patient´s social life and the couple´s life together needs to be discussed. Any form of guilt can be wiped away with clear explanations. The announcement plan will be followed.
The woman, and sometimes her partner, will always need a minimum of advice and support, even if they do not necessarily ask for it.
I hope that this book will help them.