Breast Cancer is not a Pink Ribbon.

20 10 2010

I have always had mixed feelings in case of large happenings like marches and ribbon activities and cancer months. September is the ovarian cancer month (and also a US Prostate Cancer Month and a childhood cancer month) and  October the breast cancer month…. We have only 12 months in a year!

Please, don’t misunderstand me! Awareness is very important, also in the case of breast cancer: Awareness so to recognize breast cancer in an early stage, awareness of preventive measures of cancer,  awareness what women with breast cancer go through, awareness that breast cancer often can be cured, awareness that research is needed, and thus money.

But I also feel that the attention is overdone and often hypocritical, with fancy pink ribbons and “pink”: everywhere. This feeling is strengthened by some recent articles. For instance this article in Health.Chance.org, called Pink Ribbon Hypocrisy: Boozing It Up for Breast Cancer discussing that fast food and alcohol companies Use Breast Cancer as a Marketing Ploy (whereas these items some reputation if it comes to -certain types of- cancer). You can sign a petition here against it.

There is even a book Pink Ribbon Blues – How Breast Cancer Culture Undermines Women’s Health, written by Gayle A. Sulik, that is “thought-provoking and probing argument against the industry of awareness-raising”

From the description:

Pink ribbon paraphernalia saturate shopping malls, billboards, magazines, television, and other venues, all in the name of breast cancer awareness. (…) Gayle Sulik shows that though this “pink ribbon culture” has brought breast cancer advocacy much attention, it has not had the desired effect of improving women’s health. It may, in fact, have done the opposite. Based on eight years of research, analysis of advertisements and breast cancer awareness campaigns, and hundreds of interviews with those affected by the disease, Pink Ribbon Blues highlights the hidden costs of the pink ribbon as an industry, one in which breast cancer has become merely a brand name with a pink logo.

The following quote from a woman who had lost her mother to breast cancer illustrates the feeling of many (see comments):

As the years went by, life provided me with more reasons to hate pink. Frustration over society-defined gender roles piled on as did annoyance at the image of ultimate feminine woman. And then came the big one.

Breast cancer.

My mom passed away after a six-year long battle with breast cancer at the age of 45.

When pink later became symbolic of breast cancer awareness, I wanted to punch some pink piggies. I know that some people choose to wear pink to honor or remember or show support for a loved one. That is not what I get my panties in a bunch about–it’s the way corporate America has grabbed that pink flag and waved it to and fro for their own profit that makes me furious.

I remember once standing in the grocery store and staring at a bag of pink ribbon-adorned M&Ms, my blood boiling harder with every passing second.

She ends her post with:

Everyone has a story. Some have seen the scars of a mastectomy. Some have witnessed the toll that chemotherapy takes on a body. Some have lived the pain. We all know it’s bad.

I, for one, don’t need pink to remind me.

That same is true for me. I’ve seen my mother battling breast cancer -she is a survivor- and I have seen the scars of mastectomy and these are nowhere near pink ribbon.

“Breast Cancer is not a Pink Ribbon” tweeted Gilles Frydman yesterday and he meant a great pictures exhibition that lasted 3 days, showing portraits of young topless breast cancer survivors shot by fashion photographer David Jay.

At first I found it mainly confronting: this is the reality of breast cancer! As described elsewhere (Jezebel):

Seeing scarred and reconstructed mammary glands is not just shocking because of the way breasts are fetishized in our society, but because it speaks to how much we hide, gloss over and tidy up disease. Breasts are one of the defining physical attributes for identifying a woman. Breast cancer eats away at flesh meant to nourish. Surgery is a brutal procedure from which to recover and heal. But cute, clean, pink ribbons have come to symbolize all that.

But at a second and third look, I mainly saw the beauty of the photo’s, the fierceness of the women and their beautiful eyes.

Exactly as put into words at the website of the SCAR project:

Although Jay began shooting The SCAR Project primarily as an awareness raising campaign he was not prepared for something much more immediate . . . and beautiful: “For these young women, having their portrait taken seems to represent their personal victory over this terrifying disease.

SCAR by the way stands for ‘Surviving Cancer. Absolute Reality.”

David Jay was inspired to act when a dear friend was diagnosed with breast cancer at the age of 32.

The SCAR-project is “dedicated to the more than 10,000 women under the age of 40 who will be diagnosed this year alone The SCAR Project is an exercise in awareness, hope, reflection and healing. The mission is three-fold: Raise public consciousness of early-onset breast cancer, raise funds for breast cancer research/outreach programs and help young survivors see their scars, faces, figures and experiences through a new, honest and ultimately empowering lens.”

The exhibition was last week in New York, but you can still see the photographs at the website of the SCAR-project.

Furthermore, you can participate in the project and/or buy the (signed) SCAR project book ($55).

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#FollowFriday #FF the EBM-Skeptics @cochranecollab @EvidenceMatters @oracknows @ACPinternists

27 11 2009

FollowFriday is a twitter tradition in which twitter users recommend other users to follow (on Friday) by twittering their name(s), the hashtags #FF or #FollowFriday, and the reason for their recommendation(s).

Since the roll out of Twitter lists I add the #FollowFriday Recommendations to a (semi-)permanent #FollowFriday Twitter list: @laikas/followfridays-ff

This week I have added 4 people to the #FollowFriday list who are all twittering about EBM and/or are skeptics and/or belong to the Cochrane Collaboration. Since there are many interesting people in this field, I also made a separate Twitterlist: @laikas/ebm-cochrane-sceptics

The following people are added to both my #followfridays-ff (n=36) and ebm-cochrane-sceptics (n=46) lists. If you are on twitter you can follow these lists.
I’m sure I forgot somebody. If I did, let me know and I’ll see if I include that person.

All 4 tweople have twittered about the new and much discussed breast cancer screening guidelines.

  1. @ACPinternists* is the Communications Department of the American College of Physicians (ACP). I know ACP from the ACP-Journal club with its excellent critical appraised topics, in a section of the well known Annals of Internal Medicine. The uproar over the new U.S. breast cancer screening guidelines started with the publication of 3 articles in Ann Intern Med.
    *Mmm, when I come to think of it, shouldn’t @ACPinternists be added to the biomedical journals Twitter lists as well?
  2. @EvidenceMatters is really an invaluable tweeter with a high output of many different kinds of tweets, often (no surprise) related to Evidence Based Medicine. He (?) is very inspiring. My post “screening can’t hurt, can it” was inspired by one of his tweets.
  3. @cochranecollab stands for the Cochrane Collaboration. Like @acpinternists the tweets are mostly unidirectional, but provide interesting information related to EBM and/or the Cochrane Collaboration. Disclosure: I’m not entirely neutral.
  4. @oracknows. Who doesn’t know Orac? Orac is “a (not so) humble pseudonymous surgeon/scientist with an ego just big enough to delude himself that someone might actually care about his miscellaneous”. His tweets are valuable because of his high quality posts on his blog Respectful Insolence: Orac mostly uses Twitter as a publication platform. I really can recommend his excellent explanation of the new breast cancer guidelines.

You may also want to read:

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The (un)usefulness of regular breast exam

7 09 2008

Regular breast exam, either by women theirselves (BSE, breast self exam) or a doctor or nurse, has been promoted for many years, because this would help to detect breast cancer earlier, and “when breast cancer is found earlier, it’s easier to treat and cure” . At least that is what most people believe and what has been advocated by organizations and Internet companies (i.e. selling special gloves) (see figure).

The idea that regular breast exam is truly beneficial, however, has recently been challenged by a Cochrane Systematic Review, conducted by Kösters and Gøtzsche.[1] This review has stirred up quite a debate among doctors, guideline-makers, patients and women. Many major organizations and advocacy groups have stopped recommending routine BSE. Reactions of patients vary from ‘reluctant’ to ‘confused that it is no longer needed’ or even a bit angry (‘it is my body and I decide whether I check it or not’). See for instance these reactions: 1, 2, 3. Coverage in the media is sometimes misleading, but reactions of (some) doctors or “experts in the field” also do not always help to convey a clear message to the public either. Some seize the opportunity to rant against EBM (Evidence Based Medicine) in general, which makes things even less transparent, see for instance this post by Dr Rich (although he has some good points as well), this story in the Herald and this one in Medcape.

In a question-answer like way I try to cover the story.

1. What is the conclusion from the study?
The authors conclude that regular breast examination (BE) does more harm than good and is therefore not recommended.

2. Which harm, which good?
Breast examination didn’t lower mortality (not beneficial), whereas it led to more unnecessary biopsies (harm).

3. Why did they look at mortality only?
They didn’t, they also scored the number and stage of cancers identified. However mortality (or really survival) is an outcome that matters most for patients. Suppose the screening finds more breast cancers, but early intervention does not lead to any cure, than the early recognition of the cancer is of no real value to the patient.

4. Why are more unnecessary biopsies considered as harm?
Biopsies are an invasive procedure and lead to unnecessary anxiety, that can have a long-lasting effect on psychological well-being. Extra tests to rule out that it is not cancer also cost a lot of money. Whether it is ‘worth it’ depends on whether -and to which extent- people’s lives are saved (or quality of life improved).

5. What kind of study is it?
It is a systematic review (of controlled clinical trials) made by the Cochrane Collaboration (see glossary). Generally these systematic reviews are of high methodological quality, because of the systematic and explicit methods used to identify, select and critically appraise relevant research. After extensively searching for all trials, only controlled clinical trials (studies of the highest evidence) with predefined characteristics are included. Thus authors are really looking for all the high level evidence there is, instead of grabbing some papers from the drawer or looking at the core English language journals only.

6. Is this new information?
No, not really. In fact this systematic review is an update of a previous version, published in 2003. The studies included and the conclusions remain the same. As shown from the scheme below (taken from a figure in a very interesting opinion paper entitled “Challenges to cancer control by screening” (see abstract here), the attitude towards breast self examination already changed soon after the original trials were published.

Nature Reviews Cancer 3, 297 (2003)

M.N. Pollak and W.D. Foulkes: Nature Reviews Cancer 3, 297 (2003)

7. Omg? ….
All Cochrane Systematic have to be regularly updated to see if there isn’t any new evidence that could alter the conclusions. In this case, after updating the search, no new studies of good quality were found. However, there are still some trials ongoing.

8. Can we rely on these conclusions? Is the Cochrane Review of good enough quality?
The Cochrane Review itself is of high quality, but the two randomized studies included, one from Russia (1999: ~122,500 participants) and one from Shanghai (2002: ~266,000 participants) have some serious flaws. For instance, both studies did not have an adequate allocation concealment (keeping clinicians and participants unaware of the assignments). An inadequate concealment undermines the validity of a trial (see for instance this 2002 Lancet paper). Also, description of statistical methods was lacking. Furthermore, data from the Moscow-branch of the Russian study were incomplete (these are excluded), mammography might have been used additionally and in the Shanghai trial there was a large difference in all-cause mortality in favor of the control group, suggesting that the two groups were imbalanced from the start.

9. Can the results of these rather old trials from countries as China and Russia be directly translated to the situation in Western Countries with a high standard of care?
Intuitively I would say ‘probably not’. However, we still don’t know whether the current western quality of care would actually lead to a better outcome after early detection, because it has never be tested in a well performed controlled trial.

10. Is this outcome applicable to anyone?
No, the studies are applicable to healthy, middle-aged woman without any particular risk. Screening methods might be more useful or even required for woman at high risk (i.e. familiar predisposition, previous ovarian or breast cancer).

11. Still, in recent interviews experts in the field say they do know that BSE is beneficial. One doctor for instance referred (in this Medscape paper) to a recent trial, that concluded that breast self-examination should be promoted for early detection of breast cancer (see here).
Either these doctors/experts give their personal opinion, refer to unpublished data or to studies with a lower evidence level. For instance the study referred to by Dr. Goldstein above was a retrospective study looking at how accurately woman could detect a breast tumor. Retrospective studies are more biased (see previous post on levels of evidence for dummies). Furthermore this study didn’t evaluate a hard outcome (survival, better prognosis) and there are just as many retrospective studies that claim the opposite, i.e. this article of Newcomb et al in J Natl Cancer Inst. 1991(abstract).

12. Should woman refrain from breast self examination then?
I found a short article (half A4) in the Dutch woman’s magazine (!) Viva very clear and concise.
Four woman gave their opinion.

A patient who had had a previous breast tumor kept on checking it (high risk group).

The director of a patient association said: “there is no evidence that BSE is beneficial: don’t feel quilty if you don’t check your breasts. But it might have a reassuring effect if you do”.
The spokeswoman of the Dutch association “struggle against cancer” (KWF) said that they didn’t promote structural breast exam any longer, but they advised to “know your body” and know the alarm signals (retracting nipple etc), much the same way as you check for alterations in nevi. Most woman find small alterations anyway, said another, for instance when taking a shower.
Indeed, exemplified by my own experience: 18 years ago my mother detected breast cancer when feeling a lump in her breast under the shower (malignant, but curable).

The Cochrane authors are also very clear in their review about the necessity of women noticing changes to their breast.

“Some women will continue with breast self-examination or will wish to be taught the technique. We suggest that the lack of supporting evidence from the two major studies should be discussed with these women to enable them to make an informed decision.
It would be wrong, however, to conclude that women need not be aware of any breast changes. It is possible that increased breast awareness may have contributed to the decrease in mortality from breast cancer that has been noted in some countries. Women should, therefore, be encouraged to seek medical advice if they detect any change in their breasts that may be breast cancer.”

Listen to this Podcast featuring the Cochrane authors to learn more about their findings

[audio: http://cochrane.org/podcasts/review_summaries/mp3/issue3_2008_breast.mp3%5D

————————————

Periodieke borstcontrole, uitgevoerd door vrouwen zelf of door artsen/verplegers, is jarenlang gepromoot, omdat je hierdoor eerder borstkanker zou ontdekken, waardoor het beter te genezen is. Deze gedachte wordt actief uitgedragen door verschillende organisaties en Internetbedrijven (die bijvoorbeeld speciale handschoenen verkopen, zie figuur).

Dat regelmatige borstcontrole zinvol zou zijn, wordt echter tegengesproken door een recent Cochrane Systematisch Review, uitgevoerd door Kösters and Gøtzsche.[1] Dit review heeft heel wat losgemaakt bij dokters, makers van richtlijnen, patienten en vrouwen in het algemeen. Veel belangrijke organisaties bevelen niet langer het maandelijks controleren van de borsten aan. De reacties van (engelstalige) patienten varieert van ‘opgelucht’ tot ‘in verwarring gebracht’ of lichtelijk boos (‘ik maak verdorie zelf nog wel even uit wat ik doe’). Zie bijv. enige reacties hier: 1, 2, 3. De berichtgeving door sommige media is soms misleidend. Dat is vaker zo, maar vervelender is het dat reacties van sommige artsen of ‘experts’ heel gekleurd zijn, waardoor de boodschap niet goed overkomt bij het publiek. Sommigen grijpen de gelegenheid aan om even goed op EBM (Evidence Based Medicine) af te geven, zie bijv. deze post van Dr Rich (die overigens ook zinnige dingen opmerkt), dit bericht in de Herald and dit in Medcape (zie onder).

Ik zal proberen om dit onderwerp in een vraag-en antwoord-vorm te bespreken.

1. Wat zijn de conclusies uit de studie?
Dat structureel borstonderzoek door vrouwen zelf of door artsen/verplegers meer kwaad dan goed doet, en dus niet langer aanbevolen kan worden.

2. Welk kwaad, welk goed?
Maandelijkse controle van de borsten leidt niet tot minder sterfte (niet ‘beter’), maar wel tot 2x zoveel biopsies (kwaad, ‘harm’).

3. Waarom kijken ze alleen naar sterfte?
Ze keken ook naar het aantal ontdekte kankers en hun stadia, maar sterfte (of eigenlijk overleving) is veel belangrijker voor de patient. Stel dàt je eerder borstkanker vindt door screening, maar dit leidt niet tot genezing en/of een betere kwaliteit van leven, dan schiet de patient daar niets mee op, integendeel (zij weet het langer).

4. Waarom worden biopsies als ‘schadelijk’ gezien?
Een biopsie is een medische ingreep, die -zeker in het geval van vermoede kanker-, een langdurig negatief kan effect hebben op iemand’s psychische gesteldheid. Biopsies en andere testen, die nodig
zijn om kanker uit te sluiten kosten veel geld. Of dit het ‘waard’ is hangt af van hoe nuttig die testen werkelijk zijn, dus of ze de kans op overleving of een betere kwaliteit van leven verhogen.

5. Wat voor een studie is het?
Het is een systematisch review (van “gecontrolleerde” klinische studies), gemaakt door auteurs van de Cochrane Collaboration (zie Glossary). Over het algemeen zijn deze reviews van uitstekende methodologische kwaliteit, omdat studies volgens een vast stramien gezocht, geselecteerd, beoordeeld en samengevat worden. Van te voren worden alle criteria vastgelegd. Dus de auteurs proberen echt alle evidence (positief of negatief, zonder taalbeperking) boven water te krijgen in plaats van wat artikelen uit de kast te trekken of alleen maar de top-tijdschriften te selecteren.

6. Is deze informatie nieuw?
Nee, niet echt. Dit systematische review is in feite een update van een vorige versie uit 2003. De geincludeerde studies en de conclusies zijn hetzelfde. Zoals te zien in het schema hieronder (Nature Reviews Cancer 2003, samenvatting hier), is de houding ten opzichte van borstzelfcontrole al sinds de publicaties van de oorspronkelijke studies (die in het Cochrane Review opgenomen zijn) veranderd. De Amerikaanse Cancer Society beveelt bijvoorbeeld al sindsdien maandelijks zelfonderzoek niet meer aan.

Nature Reviews Cancer 3, 297 (2003)

M.N. Pollak et al: Nature Reviews Cancer 3, 297 (2003)

7. Huh? ….
Alle Cochrane Systematische Reviews behoren regelmatig ge-update te worden om te kijken of er geen nieuwe evidence is die tot een andere conclusie leidt. In dit geval werden er geen nieuwe studies van goede kwaliteit gevonden. Wel lopen er nog enkele studies.

8. Kunnen we van deze conclusies op aan? Zijn Cochrane Reviews van een voldoende kwaliteit?
Het Cochrane Review zelf is van een goede kwaliteit, maar op de 2 studies die opgenomen zijn in het review (een uit Rusland uit 1999 met ca. 122.500 deelnemers en een uit Shanghai uit 2002 met ca. 266.000 deelnemers) is wel het een en het ander aan te merken. In beide studies was de blindering van de patienten en de behandelaars voor de toewijzing van de behandeling (concealment of allocation) onvoldoende. Daarmee wordt zo’n studie minder valide (zie bijv. dit artikel uit de Lancet van 2002). Verder was de beschrijving van de statistische methoden onvolledig, waren gegevens van de Moskouse tak van de studie Russische studie niet compleet (zijn wel uitgesloten) , en was er in de Shanghai studie een groot verschil in algehele sterfte (dus niet alleen borstkanker), wat een duidelijke aanwijzing is dat de 2 groepen al vanaf het begin niet gelijkwaardig waren.

9. Zijn de resultaten uit deze oudere studies uit landen als China en Rusland zondermeer op Westerse landen van toepassing?
Intuitief zou ik zeggen van niet. De zorg in Westerse landen en de hedendaagse behandelingen zijn mogelijk beter. Alleen weten we niet of screening door zelfonderzoek hier wel tot een betere uitkomst zou leiden, omdat dat nooit in goede gecontroleerde studies is bestudeerd.

10. Gelden de conclusies voor alle vrouwen?
Nee, de studies zijn allen gedaan -en daarom alleen van toepassing op gezonde vrouwen van zo’n 35 tot 65 jaar. Screeningsmethoden, waaronder borstzelfonderzoek, zijn wel aan te bevelen voor vrouwen, die tot de risicogroep behoren (vrouwen die erfelijk belast zijn of die eerder al borst- of eierstokkanker hebben gehad).

11. Toch stellen bepaalde deskundigen dat zelfonderzoek wel gunstig is. Een dokter (Dr. Goldstein) verwees daarbij in een interview in Medscape (zie hier) naar een heel recente studie (zie hier).
Deze artsen/deskundigen geven hun persoonlijke mening, verwijzen naar niet-gepubliceerde studies of naar studies met een lagere bewijskracht. De studie waar Dr. Goldstein naar verwijst is bijvoorbeeld een retrospectieve studie, die alleen onderzoekt hoe goed vrouwen borstkanker kunnen vaststellen. Retrospectieve studies hebben altijd meer vertekening (zie een vorig bericht over het beste studietype… voor dummies). Verder keek deze studie niet naar harde uitkomsten (overleving, betere prognose). Daarnaast zijn er evengoed retrospectieve studies die het tegenovergestelde beweren, zie bijvoorbeeld dit artikel van Newcomb PA et al in J Natl Cancer Inst. 1991(abstract).

http://breastselfexam.ca/section1slide2.html

12. Moeten vrouwen dan helemaal geen borstcontrole meer doen?
Ik kwam toevallig ergens op een terrasje een klein stukje in de Viva (1-7 aug 2008) tegen dat ik heel duidelijk vond.
4 Vrouwen gaven hun mening.

Een vrouw die eerder borstkanker had gehad bleef maandelijks controleren (risicogroep).
De directeur van de Borstkankervereniging zei: “Wetenschappelijk is aangetoond dat borstcontrole niet zorgt voor minder sterfte door borstkanker. Voel je niet schuldig als je het niet doet. Doe je het wel om zo je borsten goed te leren kennen, dan heeft dat vooral een psychologisch effect”. De woordvoerdster van de KWF Kankerbestrijding zei dat ze periodieke zelfcontrole niet langer promoten, maar dat ze ook niet zeggen dat het zinloos is. Het is net als bij moedervlekken, die controleer je ook niet gestructureerd, maar als je een verandering ziet ga je wel naar de huisarts. Daarmee in overeenstemming zei de directeur van Pink Ribbon dat 90% van de vrouwen borstkanker zelf opmerkt: als er iets zit merk je het toch wel, bijvoorbeeld tijdens het douchen. Inderdaad kan ik dat uit eigen ervaring bevestigen. Mijn moeder voelde jaren geleden een knobbeltje terwijl ze zich aan het douchen was (kwaardaardig, maar genezen).

De Cochrane auteurs zeggen in hun review ook heel expliciet dat het absoluut noodzakelijk is om naar de dokter te gaan als vrouwen veranderingen aan hun borst opmerken.

“Some women will continue with breast self-examination or will wish to be taught the technique. We suggest that the lack of supporting evidence from the two major studies should be discussed with these women to enable them to make an informed decision.
It would be wrong, however, to conclude that women need not be aware of any breast changes. It is possible that increased breast awareness may have contributed to the decrease in mortality from breast cancer that has been noted in some countries. Women should, therefore, be encouraged to seek medical advice if they detect any change in their breasts that may be breast cancer.”

Hier is de Podcast waarin de Cochrane auteurs over hun studie vertellen.

[audio: http://cochrane.org/podcasts/review_summaries/mp3/issue3_2008_breast.mp3%5D
zie Engels gedeelte hierboven