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Submitted by Dr S. Patel on 13 August 2018
Stock image of a woman in blue scarf in the foreground and a group of people in the background pointing to her

Cancer stigmas are often barriers for seeking diagnosis, as well as treatment and rehabilitation. Shubha Maudgal and Susmitra Mitra of Cancer Patients Aid Association (CPAA), Mumbai give us an insight into the current taboos surrounding cancer and the challenges such stigmas pose for patients and society.

1. What does cancer stigma entail?

There are two kinds of stigma involved with cancer. One is Self which is in the mind of patients themselves, stemming from guilt or shame.  The other is Public, in the minds of people interacting with them. The first kind is when patients recognize obvious symptoms and do not report them, resulting in presentation at a later stage. The other kind results in ostracism of cancer patients by family members, neighbours, and society. People are still afraid of the Big ‘C’ and don’t want to be called a ‘cancer patient”. Stigmas are deep rooted and often the cause for late diagnosis. This in turn contributes to 70% of all cancers in India getting detected in advanced stages and consequently suffering poor prognosis and higher mortality rates.

2. What are the types of stigmas?

There are various types of stigmas that we see around us. 

  • Patient related stigmas are those associated with cancers in “embarrassing” places. For women, it’s the breast, vagina, vulva, cervix, and for men, it’s the penis, testicles, prostate. The patient avoids consulting a doctor even though they know something is wrong.
  • Many are worried about the aftermath of a surgery because of visible scars. I have known a high-profile Mumbai socialite who refused treatment fearing the cosmetic side-effects. 
  • People still worry that cancer is contagious. We have seen cases where patients are kept apart from the rest of the family, especially during meals, their plates and glasses are segregated. Husbands have deserted their wives fearing contagion, death, disfigurement related to the cancer itself but also treatment. Women have been told that they are no longer women and abandoned.
  • In addition, there are many misconceptions related to cancers having a genetic link, leading to avoidance of marrying into families with members who have had cancer. Patients with breast or colon cancers are worried about passing on the genes to their children, and their prospects of marriage.
  • Recovered patients too have a hard-to-impossible time finding spouses and good jobs. 
  • Reintegration into society after treatment is equally difficult. Work performance and attitude at the job is often questioned. Friends and family may treat you differently. 

3. Which cancers are not acceptable in our Indian society?

To a large extent, the stigma related to most cancers no longer exists. Having said that, certain cancers are looked down upon such as Kaposi’s Sarcoma (cancer related to HIV) and cervical cancer. People are beginning to realize that cervical cancer is due to HPV infection and perhaps promiscuity; in effect it’s a sexually transmitted cancer. We have the highest number of cervical cancer cases in the world, but it still hasn’t resulted in government mandated vaccination programmes as is being done in many countries.

In the western world, lung cancer is often thought of as a self-inflicted disease due to smoking being seen as the primary cause. The same hold true for head & neck cancers in India and their relation to tobacco. 

4. Which cancers have become more acceptable in recent times?

Certainly breast cancer. Women often don’t try to hide hair loss by using wigs, and instead use scarves as a fashion statement. Even women who can afford the procedure choose not to undergo reconstruction. I know at least three women who underwent double mastectomies. They felt that they would not need to wear a prosthesis if just one breast was removed, because they wanted to look “balanced”. Women who have survived and are in remission for long periods of time are not unknown, so it no longer equals death. The fear associated with breast cancer is reduced.

Cancers that don’t leave visible disfigurement also seem to be accepted such as blood cancers. In a rare oral cancer case, I regularly see a taxi driver who keeps the bottom half of his face covered with a scarf but has no trouble getting passengers.

5. How does media (movies, adverts etc.) further instill or aggravate the stigmas?

The formula that when a character gets cancer, they are slated to die, still holds true. I don’t know a single case where someone in a movie got cancer and survived-Bollywood or Hollywood.

6. What can be done to eradicate these stigmas?

Someone needs to make a movie in which a cancer patient survives. In addition, awareness programs should be more specific because cancers are so heterogeneous.

 

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