E L PROYECTO MONÁSTICO DEL OBISPO DE H IPONA

Interview participants generally believed that negative beliefs about cancer prevailed in Puerto Rico, such as its equation with a death sentence. However, as will be detailed below, they also believed that these opinions are slowly shifting.

Beliefs about Cancer

The Negative Connotations of Cancer

One of the most ubiquitous themes to emerge from this research concerned the negative connotations evoked by cancer. Most commonly, participants—primarily

survivors and the advocates—explained that cancer is seen in Puerto Rican society as a death sentence. Soledad1_{, a 34-year old stay-at-home mother diagnosed at age 30 with}

breast cancer, stated that:

“People see cancer…First, cancer is like ‘you are going to die.’ There is like a relationship between the disease and the stigma that you can die, with all the patients’ suffering and the treatment. It is one of the first things that people think.”

Eva, a breast cancer survivor diagnosed at age 39, responded similarly:

“They see it like…like death […] Then when they find out that someone has cancer, they think that the person is going to die.”

Nearly half of the participants (n=11) in the survivor group explained that their first reaction upon diagnosis was to assume that they were going to die, such as Juanita, a secretary diagnosed at age 40 with breast cancer:

“The reaction in my case, for example, when they discovered that you have cancer, it’s like ‘you are going to die, you are going to die,’ this like shock, like…tough news, because the majority of people think that cancer is death.”

Additionally, some participants spoke about cancer as a punishment or test from God. The quotes below illustrate this theme from the perspectives of an advocate and healthcare provider, respectively, who commented on the power of this relationship for their constituents and patients:

“For us the cancer, the word cancer means death, and more than death it was like a punishment” (Angela, a 57-year old volunteer with a mainstream organization). “Here we have a large school of patients that are very fundamental religion. And they think that the cancer that they got is a test from God, and that they have to accept [it] no matter what. So that's not rare” (Dr. Corzo, an oncologist at a large San Juan hospital).

Participants frequently referenced other stigmatizing associations with cancer. “Cancer

is the most damaging thing that there is,” as Veronica, a survivor of breast and uterine

cancer at age 36, put it. Amanda, a divorced writer and breast cancer survivor diagnosed at age 39, opined that general society thought of cancer negatively:

“[People think of cancer] as a monster, as a monster. As the worst thing that could happen to anyone. I respect that, because that’s what they feel when someone they love is diagnosed. That’s how my ex-husband felt and my children felt, that it was the most horrible thing that could happen to me.”

Marisol, who survived breast cancer at age 36, spoke of cancer as a permanent mark:

“I think the majority of people think about it like it’s a death penalty, and feel so sorry for you, and will look at you as you have cancer all your life. Still today, I feel that the people who knew me in the past look at me and see Marisol who had cancer! It’s like your last name. They think about you as an ill person […] It’s a mark that you’ll have forever. Everyone is going to be looking and maybe waiting to see if you get cancer again.”

Still others associated cancer with acute fear and anguish, such as Daniela, a young survivor of recurrent breast cancer first diagnosed at age 32, and Cristina, a young mother diagnosed at age 32 with stage III colon cancer:

“When I think of the disease, first obviously I was thinking about death, and fear is a paralyzing disease. When you get diagnosed with the disease, the fear is so much that you paralyze yourself.”

“When I think of cancer: fear—maybe, fear of suffering. Maybe you think of death, usually, yes […] The anguish of thinking that something will happen.”

Maria, a three-time cancer survivor, now 62 years old and working as a professor, bemoaned the linguistic connotations of the word cancer:

“But you still have the expectations in society, the mores, that ‘drugs are the cancer of the society’ or something like that. They use it as an attack word. There are very few

illnesses that are used as an attack word. And we have to deal with that. You don’t say, ‘drugs are the pneumonia of society,’ or SIDA [AIDS]. You don’t always have to use the word cancer as a bad word, but that’s it.”

The consequences of these associations were seen to be far-reaching, impacting the psychological and physical health of both patients and survivors. Alba, an advocate who founded her own grassroots organization, spoke about how cancer survivors are forced to deal with the sword of Damocles, always waiting for the ‘other shoe to drop’:

“We in our culture see a person that got cancer and they look at themselves—I am not good for anything—and what they have behind them is the sword of Damocles, that I’m going to die because I have cancer.”

Maria, the professor and survivor quoted above, noted that some choose to accept death rather than treatment because they do not believe that cancer is survivable:

“Some people, when they receive the diagnosis, they decide to [let themselves die]. They decide to take their lives out, because they say ‘you have cancer.’ There are so many people that are very wrong, thinking about treatment: oh no ‘I don’t want the treatment, I prefer to die!’ No, no, no. So many people still think of that. Even though there is so much information, and campaigns of many kinds, sadly I think the issue remains.”

These associations can affect how much survivors can or desire to share about their diagnoses with others, or to even seek help, such as Juanita, a 47-year old secretary diagnosed with breast cancer seven years prior:

“When I was young, a woman died of breast cancer. But she was diagnosed and she locked herself in her world, didn’t tell anyone. I don’t think that she went to any doctor because soon the cancer spread through her whole body and she died. That is why I say that when you feel something you have to go run to the doctor.”

Interestingly, when the survivors were asked directly if they themselves had thought of cancer in these ways prior to their diagnosis, the majority answered that they had indeed viewed cancer as a death sentence, or as a monster, or as a punishment. Having gone through the experience of cancer, however, had taught them that these assumptions are not necessarily true. This became clear in Juanita’s testimony:

“Now it doesn’t shock me because maybe before my diagnosis I found out about a person with cancer and wow, it impacted me, but now it is like so common that people have cancer, but also it is known that you can survive. […] But there are people that may have not had a close experience and maybe continue with that same mentality.”

José, a recently-married, 27-year old lymphoma survivor, expressed a similar sentiment:

“Well, at the beginning of this, the first thing that came to mind was that you are going to die, [but] I think that now that I’ve been through this, no, that is the last thing that people should think […] The first thing that comes to someone’s mind is that you think the world is ending, that you’re going to die and things like that, but I think that no, that’s not true.”

On the contrary, the remaining participants responded that prior to their

diagnosis, they had not held these beliefs themselves—these were the beliefs that they felt that general Puerto Rican society held. They, in contrast, more often had had

exposure to survivors, or they had learned about cancer in other ways; thus, they did not give credence to the belief that cancer is an automatic death sentence. For example, Soledad, a survivor of breast cancer diagnosed at age 34, stated:

“In reality, no [I didn’t think that cancer meant death], because I had the experience of my mother [who survived breast cancer]. And even in some way I knew that this could happen, that I could go through it, that it was going to be difficult but it was not that I was going to die. I was always afraid but I was calm because I knew that you could [survive].”

This tendency of viewing cancer in before/after terms speaks to another theme emerging from the data. While many participants referenced the lack of knowledge that the general public has about cancer, they generally believed that the stigma surrounding cancer was decreasing, being replaced by greater awareness. Whether or not this opinion is explained by their own realizations following cancer treatment, or because the level of awareness in the society is in fact increasing, is impossible to tell from the interviews; regardless, participants such as 46-year old Marisol, diagnosed ten years prior with breast cancer, generally believed it was part of a larger social trend:

“I think that people think of cancer as a death penalty. You have cancer; you’re doing to die. [It’s been] 10 years since I got it; I think that maybe today is not like that time. Maybe now, there is a little bit more knowledge that cancer does not mean necessarily that you’re doing to die. But at that time, yes, it meant that you were going to die.”

This awareness was seen to spring from two sources: first, there was a belief that there are more people being diagnosed with cancer now—that “everyone knows someone” with cancer—and thus, that more people are surviving. This greater visibility of survivors has led to a questioning of the construction of cancer as a death sentence, evident in Helena’s quote, a married housewife diagnosed at age 45 with breast cancer:

“I think that by now, after almost nine years [since my diagnosis], it is seen a little differently; there is still a little bit of worry but with so many people surviving the people are seeing it a little more calmly. That is my perception. Before there was more fear but now, there is a little fear but people see so many others surviving that when they see those marches with so many people surviving, it is going to take care of their health also. I think that there isn’t as much concern as before, for me, in the people. Now the people trust more that there are advances […] They have created consciousness.”

Magdalena, diagnosed at age 45 with breast cancer, responded similarly:

“I think that people have changed significantly in thinking badly about cancer because they have seen enough people that have survived it. I don’t see the fear that existed before. Before, the word cancer killed whoever, a dirty word. Now it is more in the open, [and] they have less fear. I see it because when someone is diagnosed people remain calm, more or less. People now do know what to do, because they see my example, that ‘look, she is here,’ that you get cancer and you can survive it. I think that the population

still has a little fear because no one wants to get sick with it, but they are more positive in facing the disease […] They are so familiar with the word; almost everyone has a relative who had cancer.”

Secondly, this increased awareness was attributed to the work of the cancer advocacy organizations operating on the island, an influence that will be discussed in greater detail throughout the rest of the results. Still, participants bemoaned the lack of education about cancer, and the still-pervasive lack of knowledge in the general public, as articulated by Elena, a 33-year, two-time survivor of breast and thyroid cancer:

“Currently, there is more knowledge from the television programs, the education of the different companies, all those things. But there are always some awful myths. For example, when I had just arrived at the hospital, my second son, who has always been really caring […] says: ‘is it true that you are going to die?’ Me: ‘why are you saying that?’ ‘Because you have cancer.’ And then my reaction—forget it! I said to him: ‘look, they already took the cancer out of me, do you see this wound that I have here? This was what they took. And if you get a cold and you don’t take your medication also, you are going to die.’ And then the boy started to cry and he hugged me. It was a really impressive moment in my life! […] There is still a lot of ignorance.”

Other Perceptions of Cancer

Other beliefs about cancer were voiced throughout the interviews that were less negatively value-laden than the common identification of cancer with a death sentence. For example, several participations raised the idea that cancer is a “chronic disease” instead, paralleling what also seems to be a change in the mainstream view of cancer in the US as less an acute disease than a chronic one: for example, Angela, an advocate working for a mainstream organization, noted that “now cancer is a chronic disease, it’s

not terminal.” Likewise, Lucia, another advocate, noted “the cancer patient is a chronically ill person that needs daily or weekly medical support.” A few participants

drew an interesting distinction between the North American view of cancer and the Puerto Rican view of cancer, in that the whole family becomes involved in the process. For example, cancer was seen as a ‘family disease’ or a ‘family problem’, as in the comment below by Sra. Benitez, leader of a local support group:

“Co-survivors are anyone in the family that is part of a family that has cancer. A daughter, a husband, that’s what we call co-survivors. We work with co-survivors. Because

remember it’s not only you; cancer affects everyone in your family.” 2

Public Images of Survivors

Survivors often spoke about the increasing prominence of cancer in the public eye—on TV, on the radio, and other media outlets. With rare exception, this increasing exposure had positive effects by presenting “success stories” to the public, and it served to raise awareness that cancer is not a death sentence. Julia, a breast cancer survivor and advocate working for a large mainstream organization, spoke about using this as a specific strategy to de-stigmatize cancer and to let others know that there is support:

“When I was diagnosed, I always said that I would have liked to see commercials, or ads or something, of people who had 10, 15, 20 years of survivorship. That gives you hope that you’re not going to die from the disease if you take care and follow the guidelines. I think it will help people get diagnosed because it will take away that terror of dying from the disease and take a more active role. […] I don’t know if it was tied to either shame or pity and some people don’t want to feel the pity, but I think we [as an organization] have done a good job in showing happy faces of survivors. It’s good that you can talk about it, and it’s good that you were diagnosed early, and can be here with your children.”

However, some participants questioned the image that was being put forth in the media. This is captured in a comment by Daniela, a 32-year old survivor of recurrent breast cancer, about a recent commercial that she had just seen:

“I don’t remember if it was American or if it was local, but there was a commercial of a woman in a party in a club, and she would go to the bathroom and she would take off her wig, and it would say something about cancer survivor. And I was like, ‘I couldn’t go party! How can she go party? This is not real!’ You know?”

Celebrities were often mentioned and linked to participants’ own experiences, including Adamaris Lopez, a well-known Puerto Rican actress who was diagnosed and treated for breast cancer in 2005, and froze embryos with her then-husband. When asked, “when did they tell you that you wouldn’t be able to have children?” 34-year old Camila, a healthcare worker and survivor of breast cancer in her early 20s, commented that:

“I don’t know exactly when I found out, but I’m sure it was probably a year after I had taken the chemotherapy. And that’s why I was really mad, because you see all the celebrities that come on the TV, and they immediately go and freeze your eggs, but I didn’t have that chance, and they never gave me that chance.”

Indeed, the survivor Daniela, quoted above, noted that cancer—particularly breast cancer—was now a “high-fashion disease,” having caught the attention of companies and donors who determined that they are worthy causes. As she notes, this new attention can be dubious:

“Cancer is really fashion right now, or more breast cancer. It has become a fashion disease. And the funny part, for example, let’s say KFC. KFC painted all the KFCs in pink, and if you had the bucket, they would give to the cancer association $1 out of that bucket. But it’s like, your f---g chicken gives cancer! It helps to give cancer! Could this be more contradictory? […] Now in every bag of groceries that you’re buying and in the gas station…It’s a disease that, because it has hope, it’s become more publicized. Because, for example, Alzheimer’s doesn’t get this publicized. It doesn’t have hope […] [Cancer] is the Prada of all the diseases (laughs). And mostly breast cancer.”