Scans, check-ups, check-up days, sometimes blood tests too, and all this generates a lot of anxiety for most patients. Today, we are looking at the problem of the overwhelming fear of check-up days. So, what is scanxiety?

Do you feel overwhelming fear as your medical exams or check-up days approach? You probably suffer from “scanxiety”. 

Scanxiety is a term used to describe the anxious feelings that arise in the time leading up to a cancer imaging scan, during the scan, and while waiting for results.

My name is Delphine Remy and I am the author of the book Cancer? I manage! and the founder of the podcast “Naître princesse, devenir guerrière”. I am in remission from hormone-dependent breast cancer. In this article, I will tell you about the phenomenon of “scanxiety”, an illness that affects many cancer patients.

What is scanxiety, and what its causes?

Scanxiety: Definition

The term comes from the compression of two words scan and anxiety. Condensed, they form the word scanxiety, an Anglo-Saxon term that is much shorter, easier and more figurative to describe the overwhelming fear of control days.

very real fear of control days

It takes different forms and different intensities because we are all unique. It is sometimes powerful, overpowering even, sometimes invasive or even sneaky. It can wake you up at night, tighten your entire rib cage and prevent you from breathing at times. It can even make you vomit, make you irritable, aggressive, depressed, uncontrollable, agitated and so on.

Scanxiety, a type of post-traumatic stress disorder

What you feel before each check-up, during the exam itself or while you are waiting for the results is post-traumatic stress disorder. 

  1. No, you're not stupid,
  2. No, you are not unable to manage your stress or your emotions,
  3. No, you are not hysterical or weak,
  4. No, you don't always imagine the worst,
  5. No, no, no, what you are experiencing is normal and legitimate.

Patient in remission or metastatic patient, different issues

I would like to illustrate an important point by making a distinction between a patient in remission and a metastatic patient:

  1. For the patient in remission, the scan result will indicate whether he is still in remission or whether the cancer has returned, the underlying fear is the return of the cancer, metastases and all that implies.
  2. For the metastatic patient, the scan result will indicate whether the metastases are stable or have progressed, so the underlying fear is progression of the disease to other organs and the possibility that there are no more treatments available.

In both cases, the results of the scan can potentially announce death. The fear is the same when it is at its peak, but the stakes are different, the impact is different.

How to reduce the fear of control days?

So it's a great leg for you to read all this, but what is the solution, how to alleviate this fear? I will try as best I can to explain everything that is happening, to name many phenomena and to provide you with solutions.

  • Sometimes, and even often, putting words to the pain allows us to reduce its intensity or regain some control over what is uncontrollable.
  • Sometimes, knowing that millions of people are going through the same thing can make you feel less alone.
  • Sometimes connecting with our brothers and sisters in combat helps to reduce the intensity of our pain.

Does this topic speak to you? Give your comment below.

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Controversy over screening, and if we let women decide

And here is Pink did not even show the tip of his nose, that in favor of a new study recently published, the controversy over the interest of screening is already raging on the net. Pros and cons give themselves to their heart's content, and send to the figure the various theses on the subject, all contradictory, each persuaded to be right and of course remaining firmly anchored on its  positions. My purpose here n is not to decide on the merits of this or that analysis, (interesting arguments exist on both sides) but to raise a problem that all this beautiful people seems to forget: the right of every citizen to dispose of of his body and decide for his health as he (she) hears it!

But of course there is the problem of information, it comes to us on the one hand by the media (and I include of course internet) and on the other hand by our caregivers. But traditional newspapers say that mammo saves lives while bloggers, doctors, citizens, fervent opponents of the exam, deny loudly the veracity of the first. (Astonishment little or no patients). How to navigate? Admit that there is enough to lose its Latin!

Of course, I say to myself, rather than believe what the newspapers say, it is better to go to see your doctor. Yes, but our doctors do not necessarily give us the right information to know this famous benefit / risk balance. So in these conditions how can we decide between the acceptable and the unacceptable?

But above all, what is this benefit / risk balance? In medicine, white and black do not exist, we always navigate in the gray, more or less clear for the problem that concerns us it is proven that mammography carries risks - it induces a low percentage of false positives, over-diagnosis and irradiates our body; and has benefits - it can detect smaller cancers and therefore result in lighter treatments. Each must have the ability to make their choice and decide what risk (s) they are able to take.

Indeed, we alone can decide for ourselves, it is not up to the doctors to do it for us! It's up to us to ask ourselves the right questions: am I ready to put up with the fact that I am discovering a non-existent cancer and to undergo other analyzes or to receive a not-so-innocuous irradiation every two years (like any irradiation that says) Or do I prefer to know if I am developing an incipient cancer in my breast and put all the chances on my side to treat it as soon as possible? We must be able to choose what seems most appropriate to ourselves and this is only possible if doctors rather than prescribing, without a word or explanation (understandable) explain to patients why they ask them to carry out this examination. So who says good questions,

It must still know that prescribed or not, systematically or not, I have never seen anyone compel a woman to get tested. Neither a doctor nor any government. Some will do their mammography well before their 50s, others refuse to go even after receiving their summons to do so. (I remind that systematic screening is set up in France for all women between 50 and 74 years).

This proves well that the doctor (or the public authorities) propose and the women have and yes but to dispose when one does not know the ins and outs is meaningless.

So instead of fighting for or against screening mammography, why not discuss together the information that everyone is entitled to claim of this famous decision shared between caregivers and patients who would both have same elements of reflection?

Finally to finish, I see dawn from here the swords of the opponents speaking finance, deficit of the Social Security. I mean all this but simply I like to believe that if most of the European countries have set up a systematic screening In recent years, it is after a lot of judicious and costly analyzes that attested that the benefit of the targeted population was greater than the risk. So, as my daughter says, I say that, I say nothing!
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Tamoxifen, we take it back for 5 years

If no new revolutionary has been announced for breast cancer during the Asco Congress, the results of an English study, presented yesterday at the plenary session, could still change the treatment practices of this pathology. This study demonstrates that taking tamoxifen for 10 years versus the 5 years recommended to date, decreases the risk of recurrence by 25% and the risk of cancer mortality by 23%. In other words five more years of the small pill would allow women to significantly increase their chances of not relapsing.

We may well see the effects of this announcement quickly! Because here, there is no question of waiting for the placing on the market of a new molecule overpriced, tamoxifen being already marketed worldwide for years. Oncologists could therefore change their prescriptions very quickly!

I asked the question to several oncologists here in Chicago who are all unanimous. This is good news but the pill is not going to be easy to swallow! (Sic). We know that in terms of non-compliance, tamoxifen is a case study! Nearly half of women stop their treatment after two years. So take it for 10 years!

This long-term treatment can not be imposed without explanation at the risk of seeing many women throw in the towel.

It is clear that for patients to accept these new recommendations, they must be informed upstream of the important benefits but also the side effects they may face and the risks associated with taking the drug. (Including a slight increase in the risk of endometrial cancer that requires ultrasound monitoring).

With all the cards in hand, each woman will have to consider and think about what is acceptable for her: to increase her protection while undergoing sometimes disabling adverse effects or to choose to take the risk by privileging her quality of life.

Good news for researchers probably but may be more difficult for doctors who in their practices are confronted daily with clueless women.

The Asco ends tomorrow without bringing new hopes for breast cancer. Nonetheless, other pathologies have benefited from remarkable advances, particularly for cancers of the uterus and ovary!

A beautiful adventure that ends for us ... I take the plane on Tuesday with a promise, that of returning to this beautiful city! See you soon for other news from Paris ...
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The medicine X example, the future is upon us
Here I am back from the lecture of the brilliant Dr. Larry Chu that took place at Palo Alto Stanford University last weekend. The opportunity for my friend Giovanna Marsico and me to meet some personalities of the American e-health and to try to understand the similarities or differences which exist between our two countries.

First impression when I arrive in the Californian sun: what a chance to be there among doctors and patients whose aura has crossed the borders, me little French who looks with admiration for a few years all these people trying to change patient relationships / doctors and more broadly the health system.

The thing that has undeniably struck me most is that patients have a prominent place in this conference. Present in the board, in plenary session as in workshops, they were put in the spotlight during all the congress without counting a whole day was devoted to them. They are especially religiously listened to by professionals unlike our dear French doctors who prefer too often to leave the room when we express ourselves. They are really involved and each of their interventions is rightly considered as an important stone in the building.

Militant like Regina Holliday, poignant as Liza Bernstein, mythical as e-patient Dave, their speeches are part of a desire to change things for themselves but also for their peers.

The doctors I listened to are extremely respectful of this patient's words like Dr. Leana Wen, who is so human, Dr. Deanna Attai (participant in #bcsm twitter chat that brings together patients with breast cancer and doctors) or Dr. Dany Sands who wrote a 4-handed book with his patient, prominent Dave of Bronckart aka e-patient Dave.

Of course, the health systems are not the same and we were able to measure how lucky we were to live in a country like France that benefits from social security. The claims are therefore not identical. But it is despite the borders that separate us, the same experiences, the same feelings, the same desires.

It is the human that was discussed in this conference, rather than technologies that finally appear only as potentiators of these relationships between people with the same will. A synergy that we would like to feel here too.

A chance and an honor to represent France in this American congress, to meet and exchange with all, to listen to the interventions and to come back here the desire even more present to make things happen and to change behavior. The next big meeting of this type, Doctors 2.0 & You, will take place on June 5-6 in Paris, another opportunity to move forward and co-build together the practices.

To know more:
  • Medicine X
  • Patients & Web
  • Cancer contribution
  • Doctors 2.0 & you
  • The hashtag of the #MedX conference

I would like to thank again and again here my friend e-patient Liza Bernstein and Dr. Larry Chu who invited us to MedX. I hope to see you soon!
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Ethics, social media & end of life

This morning, I came across an article in the Canadian press whose title immediately appealed to me: when tweeting his illness is controversial.... It tells the controversy around a young 44-year-old American woman, Lisa Bonchek Adams, mother of three young children, and suffering from breast cancer for 7 years, which unfortunately metastasized in 2012. This woman has a blog   since 2009 and tweets a lot about his account which is also very followed.

She tells about her cancer, her life, her children, her joys, her sorrows and more recently, her inclusion in a clinical trial in which she places all her hopes. She writes to share, inform and change the image of a disease whose pink too often obscures reality. So far nothing abnormal, so where does this outcry come from our friends across the Atlantic for which social media are yet an institution?

The controversy arose from journalist Emma Keller, who attacks Lisa's way of doing so, comparing her to reality TV in an article about the Guardian. I have not been able to read this column, which has since been withdrawn by the newspaper's editors, but its title "Forget funeral selfies." What are the ethics of tweeting a terminal illness? "Is cold in the back. Things are posed, the young woman is terminally ill, and it would be better if she were silent and died in silence!

But while digging here and there, I found Emma Keller's blog, diagnosed with breast cancer in situ in 2012, could not find better at the time than to tell about her double mastectomy and her reconstruction. on his site in a ticket relayed by the Guardian. If I understand correctly, for the columnist, it is "ethical" to blog on a "small" cancer but not on a metastatic cancer!

This sad story made me think of the case of Marie Dominique Arrhigi, aka MDA, journalist at Liberation who told her cancer until the end on his blog, K, crab stories  . Another country, other morals, Marie Dominique was unanimously hailed for his courage and a book from his blog was published on his death.

But the case does not stop there, since after the extremely virulent reactions to this first article, Bill Keller, Emma's husband, publishes a few days later a new opus in the New York Times . Bill tries to gain height and not content to also denounce our blogger for his unbearable exhibitionism, he wonders about the end of life and especially the cost of what for him, is similar to the relentless therapeutic . Clearly, he condemns Lisa, advising him, like his father-in-law, who died of cancer, to agree to stop treatment and calmly go to other places. We are witness to the death sentence of the young woman, without prior knowledge of her case, and her guilt at the exorbitant costs of the clinical trial she has entered. I remind you that in the USA, the expenses of care are mainly supported by the private insurance of the patients!

So, what about all that? Two separate topics are discussed in this sad case: media exposure and end of life.

Regarding the first, if Lisa wants to write to the world about her cancer, her story, to inform or for any other reason that belongs to him, how does this couple of journalists interfere? In the name of what to pin this woman who fights with dignity? Why condemn her without appeal and ask her to keep quiet? Cancer is scary, it disturbs and obviously the right to talk about it is debate! It may be better to show only the pink face of the iceberg and its survivors who are so much celebrated in the United States. But the huge interest of the media and the internet is that everyone is free to read or follow whoever he wants. By putting Lisa in the spotlight, the Keller have made an unexpected advertising for proof, his twitter account that went from 7800 followers to 13000 in a few days. Was it the goal? I do not think so. ? It seems to me that the personal story with the disease of the donor couple has conditioned the content of their writings.

But beyond the case of social media and media exposure that some choose to have, these journalists pose a fundamental problem. Should we question the fact that Lisa continues to hope? Do we have the right to decide for her whether she should continue to fight or give up? In a country like ours, in which medical care is supported by the community, the issue is likely to arise soon. What price is society willing to pay for a few months, extra years of life? This is already the case in England or Canada where a drug is considered in terms of cost-effectiveness. In France, the subject is not on the agenda, but the exponential prices of innovation are likely to plunge us into this ethical debate. The citizens, sick or well-off, are all concerned and health democracy here makes sense. Anyway, I was terribly embarrassed by the personalization of the discussion. One can not calmly approach a subject so complicated starting from the particular case of someone from whom I also repeat it, we do not know the medical file. It is a debate of public order in the same way as euthanasia, which can not in any case take its source in a painful personal story! What do you think? It is a debate of public order in the same way as euthanasia, which can not in any case take its source in a painful personal story! What do you think? It is a debate of public order in the same way as euthanasia, which can not in any case take its source in a painful personal story! What do you think?

On the site of cancer contribution, a large survey on the subject of access to innovation in cancer will be posted soon. The opportunity to use the Internet intelligently to discuss serenely a topic that affects us all. I can not really commit to taking a tour and thus bring your stone to the building!
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Cancer Plan 3 - The patient becomes a trainer

Good things and some announcement effects as always in this plan cancer 3 unveiled by the President of the Republic last February 4, plan that I will not decrypt in detail here since you have probably read and heard a lot about it since last week. I preferred to turn to an extent ignored which nevertheless could help change things  significantly  for patients!

Here are just some of the flagship measures in bulk largely relayed by the media: reimbursement of additional examinations (ultrasound) during screening for breast cancer, generalization of screening for cervical cancer, doubling the management of hair prostheses (not breast prostheses, why?), removal of the remaining burden for post mastectomy reconstruction, ease of access to supportive care, increased inclusion of eligible patients in therapeutic trials, strengthening of the fight against tobacco and the already famous right to be forgotten with the planned revision of the AERAS convention. Measures expected by all to follow closely!

What we may have been less talked about is the chapter "Enabling everyone to be an actor in their care, p.68 and following, and more particularly action 7-15:" to  support experiences of participation of volunteer resource-patients in caring for people with cancer and in the training of health professionals and evaluate their contributions and conditions for success (recruitment methods, training of volunteers ...) ". This was one of the proposals I made during my audition by the team of Professor Jean Paul Vernant who had been very attentive.

In other chronic conditions such as inflammatory bowel disease, some hospitals already have two-headed bipolar patient / health professional education programs that work very well. It is therefore easy to imagine transposing what already works for IBD to a disease such as cancer.

But this measure is more ambitious since these patient resources could go as far as training professionals! And that was not won! This is already the case in some countries such as Canada (Quebec) where the patient's expertise is recognized and where some of them participate in the initial training of doctors. So let's dream a little and imagine patients in front of our medical students teaching how to announce cancer, the importance of listening, life with treatments, management of side effects, the after and let's go further (let's be crazy), patients who would explain their expertise of the disease, the doctor / patient partnership, the importance of negotiation, the shared decision!

To be quite accurate, I asked much more (of course), in particular, remuneration of these patients that I had called "experts" and not "resources", term probably chosen to spare some susceptibilities. This remuneration would have been a guarantee of sustainability and largely offset by a decrease in the costs related to non-compliance or the numerous emergency room consultations, for example.

This is also what the authors of this article  " the patient trainer, theoretical and practical development of a new health profession" published on the site of the IRDEF (Interdisciplinary laboratory of research in didactics, education and training): " Approaching this model (editor's note: that of firefighters) to patient trainers, a small part of paid trainer patients among a set of volunteers or volunteers organized according to the availability and conditions of service of mission of general interest could thus participate to decrease the costs generated by the problems of compliance and by the other problems of additional costs, both financial orders, quality of life deficit, and human resources. Would not that be what health systems are becoming more and more constrained?

Second downside: if we read well, we limit ourselves to support experiments and to evaluate them without extending on the concrete implementation. We have the right to ask ourselves: Who will get into the experience? How and with what support? Who will evaluate? According to what criteria?

Moreover, if we look more closely, we find many vague verbs concerning the means used for the measures of this plan are transformed into reality: identify, study, reflect, experiment, recommend, facilitate, promote, evaluate. Rather than set up, produce, develop, guarantee.

I read a lot about the internet lately about him. Traditional media that praise his ambition and voices from including more skeptical Internet users. Obviously the previous plans are struggling to get established in a generalized way and some measures have even remained at the stage of wishful thinking. Of course we are still waiting for more: what about primary prevention besides tobacco, clinical trials in pediatric cancers, the place of psychologists in the care path, the rest of the burden and so on! Yes, yes and yes. But other countries are not willing to put 1.5 billion euros on the table to improve the care of their congeners with cancer.

The criticism is easy and this plan is indeed criticize and incomplete but not at all goes I prefer the yes ... yes but! Yes to this plan even if it is perfectible but especially, let's be vigilant! Vigilant that the measures lead to concrete actions, and of course that these actions are widespread quickly throughout the territory. This is the commitment to be made by the INCa in charge of its implementation.

Rather than make a ticket to load (I would have found material :)), I prefer to be optimistic and hope that things move quickly for all of us because we do not have time to wait!
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Behind the treatments, the woman

The people who meet us at the time of treatment, tend to consider us primarily as a sick person and more like the woman we are anyway. We even tend to forget ourselves sometimes... Yet if our physical is damaged, our deep self has not changed.

Indeed, for others, we are no longer Caroline, Emma or Brigitte but we become the cancer of which we suffer. We lose all identity: same bald skull, eyes without a soul due to loss of eyelashes and eyebrows, nails falling.. we end up in the eyes of others by us all look like, we endorse the costume of the patient and we become the image even suffering or even death. Most of us only talk about the disease, its treatments, their side effects forgetting that we can also, between two chemists, aspire to forget this cancer that sticks to our skin, discuss cinema, books or exhibitions, chat about everything you're welcome…

But on our side, too, our concerns revolve around these infernal care, these trips back to the hospital that punctuate and pollute our daily lives. Our reflection in the ice becomes unbearable. To ward off the mirrors of a black veil, especially not to see our reflection, to look away from those who scrutinize us in the street, few are able to assume their new appearance. And if, when cancer gives us some respite, we aspire to participate from time to time in real life, it is not so simple to disassociate and extract for a time the shackles of the disease.

I am delighted to present this beautiful video made at the instigation of the English association Breast Cancer Care, which in two minutes reminds all that behind the treatment is the woman...
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