October Issue 2009

Breast cancer is considered to be a curable form of cancer but only if it is detected early.

However, in a society where one does not speak openly about personal issues, especially those pertaining to our bodies — regardless of whether it is a medical condition — something that can be treated early is left to grow and spread, and eventually kill.

One such case occurred a decade ago, where an unmarried girl in her late 20s from an educated middle-class family noticed an abnormality in her breast. But she didn’t tell anyone about it — not even her mother or sister. The reason was simply the shame associated with speaking about that part of the body. It was not until she grew physically weak that the family noticed there was something wrong. A blood test and follow-up checks revealed that what had begun as breast cancer had spread to her entire body, and she died soon after.

Ten years down the road, attitudes have not changed drastically. Says Dr Azmina Valimuhammad, an oncologist at the Aga Khan Hospital: “The biggest stigma with patients suffering from breast cancer and why they don’t want to divulge this information is because they worry about their daughters; they say they won’t get married. Because of our ingrained religious beliefs, they also think this has something to do with a sin they have committed and see it as a form of punishment.” One particular patient’s sister-in-law wished the illness upon herself — she saw it as a means of purging herself of her sins in this life.
While these are some of the reasons why help is not sought, even when it is, it is on certain terms. One, of course, is a vow of secrecy: “A lot of patients who come to me ask me not to disclose information about them to their families; they usually prefer to keep it between the spouses,” says Dr Valimuhammad. Additionally, the cost factor also keeps many away from seeking timely help. “They don’t want to be a burden on the sole earning member of the family,” she adds. Cancer treatment — chemotherapy, radiation and surgery — is expensive and depending on the nature of the illness, can vary from Rs 5,000 to Rs 500,000 and more. Additional costs of tests such as biopsies, mammograms, ultrasounds, blood etc. are again costly — a biopsy needle and mammogram alone cost Rs 3,000 each.

Further, hospitalisation and doctors’ fees, in addition to the unrealised and unaccounted expenses such as travel costs and special food, are all a huge financial drain. Cancer also tends to turn into a lifelong illness. Once it has been diagnosed, there are always chances of a relapse, and to prevent that there is expensive medication one must take, that too without a 100% guarantee that it will prevent a relapse, or in turn create other serious health problems.

And there are also those who do not have the resources at all. For them, hospitals such as Shaukat Khanum in Lahore and Kiran Hospital in Karachi offer free cancer treatment, whereas government and private hospitals too have Zakat funds which can be availed by those who cannot afford treatment. What the Pink Ribbon Pakistan has done, together with the Institute of Nuclear Medicine and Oncology (INMOL), is launch a Breast Cancer Mobile Mammogram Clinic. Operational since March 2009, this on-wheels clinic, equipped with mammogram and ultrasound machines, travels to different venues — at the moment only in Lahore — where awareness camps are arranged by Pink Ribbon volunteers and provides free screening. This, too, however, has its limitations.

Not more than 20 women a day can be screened using the mammogram machine. Also, only those who are above the age of 40 can be screened through mammography — as the machines are not made to detect tumours in young breasts. But those who are younger can have their ultrasound and clinical examination done. INMOL radiologist Dr Asima Sohail and her staff of six technicians and nurses have so far detected three cancers through mammography and one through ultrasound and clinical examination. “What we do is opportunistic screening. We cannot screen every single woman, but those who are screened, their record is maintained and if something shows up in their mammogram or is detected through clinical examination, that person is referred to an INMOL hospital, where they are registered and a complete screening and follow up is conducted,” says Dr Sohail.

There is increased awareness about breast cancer now than there was a decade ago, but this increased awareness also has its consequences. Recently, indulgence in over-treatment sounded alarm bells in the US.

An article in Reader’s Digest reported an increasing trend in Americans to be aggressive about illnesses, “just in case.” A case is mentioned in the article of a patient with DCIS, a tumour in the breast which may or may not be cancerous, who underwent lumpectomy, radiation and took tamoxifen — a drug taken after cancer treatment to prevent its relapse — all of which is standard cancer treatment. The general trend is to frequently get mammograms and ultrasounds, and if a tumour is detected, to remove it, whether it is malignant or not. A consequence of this has been that these patients have developed several other serious health problems, be it because of surgery or medication.

“You don’t want to come across a patient telling you, ‘Doctor I had an abnormality and you did a biopsy. It was not indicative of cancer and you told me to take a watch-and-wait approach. Now, I was diagnosed with cancer and I had to undergo mastectomy (removal of breast),” says Dr Valimuhammad. “So, you don’t know when you’re seeing 10 patients who have low-grade, pre-cancer spots on the mammogram, should you wait or watch them or should they undergo mastectomy, because out of 10, 70% may never change into cancer, 30% will. Because we don’t have the tools to identify those women who will or will not progress into cancer, everybody deserves a chance — it’s over-treatment, but you don’t want to under-treat them either. You wouldn’t want to sleep with it everyday of your life thinking that this will turn into cancer and spread.”

Recent studies state that not only is the incidence of breast cancer on the rise, but Asian women are more susceptible to it and that Pakistan has the highest rate of breast cancer. Dr Valimuhammad, however, is not convinced. “I don’t think it is right to generalise or give such a big statement (that Pakistan has the highest rate of breast cancer and Asian women are more susceptible to getting it). We do not have the statistics or registrations of these patients to prove it.” According to her, just one study was conducted, and it was confined to the south of Karachi. “If you take that as representing the entire country, that would not be appropriate.” But with the possibility of breast cancer increasing among Pakistani women, what should one be doing? (See the related storyKnowledge is Power).

The risk-free options are self-examination and clinical examination, which can begin at the age of 18. Those in their 20s can get an ultrasound, those above 30 can get an MRI and above 40 a mammogram. This is standard regimen for those who have cancer in the family. Other women, too, can follow this procedure, in fact should self-examine and get themselves examined. But ultrasounds, MRIs and mammograms should be performed only after consulting a doctor to avoid unnecessary exposure to radiation.

What all women should be watchful of, says Dr Valimuhammad, is hormone replacement therapy. “If one has to absolutely use hormone replacement therapy after menopause, then limit the exposure to a few months until the menopause symptoms have been controlled,” she says. Prolonged exposure to oral contraceptives, especially if taken at a young age, increases the risk of getting breast cancer. The more a woman is exposed to oestrogen, the higher the risk of getting breast cancer. Early menstruation and late menopause, not having children at all or having them at a late age, taking hormone replacement therapy and oral contraceptives all increase the amount of time a woman’s body is exposed to oestrogen.

Having children at an early age, having multiple children and nursing them for an extended period of time, on the other hand, are all seen to be preventive and reduce the risk of getting breast cancer. This is not religious propaganda but based on biologically proven facts. During pregnancy, for example, progesterone as opposed to oestrogen, becomes the dominant hormone. Tamoxifen, in turn, is also an oestrogen suppressant.

While lifestyle and eating habits do not have a direct correlation to breast cancer, according to research, obesity now does. “There is scientific evidence that insulin which is produced in our body — and is produced more in a person who is obese — is conducive to the growth of cancer,” says Dr Valimuhammad. Thus, avoiding alcohol and foods which can lead to obesity is encouraged. Physical exercise is also considered very important — not just to reduce weight. A study revealed that girls who were exercising regularly were able to delay the onset of menstruation at an early age. And if they indulged in heavy activity, then the menstruation cycle was also delayed and the frequency was decreased — instead of a four-week cycle they had a six-week cycle. And that was associated with decreased hormonal exposure and less chance of getting breast cancer at an early stage in life.

All these, however, don’t guarantee that one does not get breast cancer, but considerably decreases the risk of getting it.

Alternately, 5% of all breast cancer cases are linked to the BRCA 1 and 2, a gene abnormality which increases the risk of a woman developing breast and ovarian cancer before menopause. If two very close family members have been diagnosed with breast cancer and there is a history of ovarian cancer in the family, it is advisable for those women to get themselves tested. A blood screening determines whether someone has the BRCA 1 and 2. However, the psychological impact of testing positive, together with the implication of paying a  high premium on health insurance, must be noted.

Those with the gene abnormality are justified in getting bilateral mastectomy before the cancer develops, according to Dr Valimuhammad, as is being done by women in the US who have unilateral breast cancer. By doing this, the risk of breast cancer is reduced by 5%. However, the risk of ovarian cancer still exists and so after having children at an early age, oophorectomy (removal of the ovaries) before 30 is also advised.

“If a woman consciously opts for the removal of both breasts, then she has the mental and emotional strength to cope with the cosmetic outcome,” she says. As for the physical implications, it has been observed that women who have had their ovaries removed die younger as opposed to their counterparts who have not had their ovaries removed. This is attributed to the high cardiovascular mortality, because the removal of the ovaries leads to early menopause which increases the risk of heart disease. Early menopause does also lead to osteoporosis and arthritis.

But while there is so much emphasis on prevention, there is very little available in the way of counselling and medicinal advice for those who are undergoing or have completed their treatment.

Sameena, now in her third year of remission, was diagnosed with breast cancer at the age of 47. “I had an outward symptom, a dimple. I wasn’t aware this was one of the symptoms, I had heard forever about how to inspect yourself and look for lumps but now they tell you that any kind of discolouration, a mole, redness, swelling — anything you see on your breast you should report. Anyway, my doctor told me a dimple was a sure sign and I had been watching it grow for six months.” Since Sameena had recently moved back from the US, she did not have a doctor of her own and it was on a chance trip when she accompanied her sister to a gynaecologist that she was told to get a biopsy. The biopsy report confirmed the cancer.

Undergoing treatment at Shaukat Khanum, Sameena says she is thankful such a setup exists in Pakistan, but there are drawbacks to free treatment. “One oncologist is dealing with several people; you are given an appointment for 10 a.m. and your turn comes at 1 p.m., which gets frustrating.” Put on tamoxifen after undergoing chemo, radiation and lumpectomy, Sameena threw the medicine away after three months. “It had such strong side effects. It was making me obese and my face became full of hair. I told my doctor if I’m going to live looking like a sumo wrestler I’d rather die! It also makes you manly, develops your muscles. I know two people who had breast cancer before I did and both had tamoxifen for a five-year period, without fail. One’s cancer has returned after 10 years and the other’s after eight — so I said I’ll take the risk.”

Kausar, diagnosed with breast cancer in 1991 at the age of 40, also does not have pleasant memories of the years with tamoxifen. “I suffered from acute depression and it had terrible side effects. I had seen relatives of mine going through chemotherapy and the effect it had on their lives; it worsens the quality of life.” So, Kausar chose surgery and tamoxifen over conventional chemotherapy and radiation, and after five years of tamoxifen and annual ultrasounds, bone scans etc., she grew wary of those too and gave it all up for a herbal remedy.

Counselling and support other than that from the family is missing in Pakistan. “People need to be told exactly what will happen to them when they undergo the treatment. Also, you’re left to the technicians and the machines.” Being single, Kausar didn’t have a family member accompanying her each time for a hospital visit, and sometimes, “you don’t want to confide your fear and anxiety to close family members, such as how long will I live,” she says.

The lack of support groups is a unanimous concern for most breast cancer patients. “They have them in the US, where women with breast cancer get together and talk,” says Kausar. Dealing with the illness psychologically is one of the biggest challenges. Breast cancer is an illness which physically manifests itself. “It is not like a hysterectomy which is something internal. You feel mutilated, physically made uglier; you don’t want to look at yourself.”

Feminine roles ascribed to women in Pakistani society require them to play wife and mother, primarily. Removal of the breasts and ovaries can have a considerable psychological impact on women. While the removal of the ovaries becomes unavoidable in some situations, there are now ways of performing what is called the breast-conserving procedure.

“When one has breast cancer, they can either have the complete removal of the breast or they can have what is called the breast-conserving procedure,” says Dr Valimuhammad. “In the breast-conserving procedure there is only the removal of the lump, followed by radiation. It is as effective as the complete removal of the breast. There are situations in which they can do a nipple-sparing mastectomy or skin-sparing mastectomy in which they remove the entire gland — the breast tissue is basically lobules and a gland, so they can remove the fatty tissue and they can leave the skin and nipple area, and fill the gap either with a muscle from the back or belly, or put a silicon implant. It all depends on the location of the tumour and the feasibility of the procedure. One procedure doesn’t apply to everybody.”

Sameena feels the people also need to be educated on how to react to breast cancer patients. “When you’re hairless, eyebrow-less and eyelash-less, people look at you.” Kausar says people don’t know whether they should speak of the illness or not, and for her, it became very uncomfortable at her work place. “I was given the same kind of hours at work, nothing extra; there is so much pain after the operation, you can’t even move your arm. You just don’t have the same strength left anymore.” So it is not only about creating awareness about breast cancer, how to check and treat it, but also what can be done for those who are currently undergoing treatment and those who are recovering, to provide them complete treatment, which includes dealing with the psychological impact of the illness as well.

What is also required is a Pakistan-specific study; oncologists around the country need to get together on a single platform to pool their studies and findings, case histories, and share this information with the public. The inability to work together, as Dr Valimuhammad also says, is a problem in Pakistan, and everyone strives to be the first at everything which keeps them from coming together. But unless this happens, accurate findings of whether the incidence of breast cancer is higher in Asian and Pakistani women and why this is so, is unikely to come forth.

Simple Facts about Breast Cancer

BREAST CANCER — WHAT ARE THE RISKS?
No one knows why some women and even some men get breast cancer and others don’t, but certain factors increase the risk. They are:

• Age — The older you are, the higher your risk
• Gender — There is a link between breast cancer and the female hormone oestrogen
• Family history — If your mother or sister has had breast cancer, risk of getting it rises
• Age at first child birth — Women who had their child at the age of 30 or later
• Age of first menstruation & menopause — The earlier women begin menstruating, the higher the risk seems to be. Women who enter menopause between the ages of 45 and 54, have a higher risk

WHAT TO DO AND WHAT TO LOOK FOR
Breast self examination should be performed once a month after your menstrual period, when the breast is not tender or swollen. If you are not always regular, do it on the same day every month.
Don’t get upset if you feel some lumps or hardness, that’s normal. It is also normal if your breasts are not exactly the same size.

• A lump in the breast which is usually single, firm, and most often a painless or local thickened area
• A portion of the skin on the breast or underarm swells and has an unusual appearance
• Veins on the skin surface become more prominent on one breast
• An unusual increase in the size of one breast
• The breast nipple becomes inverted, changes in skin texture, or has a discharge other than breast milk
• A depression is found in an area of the breast surface
• Swelling of the upper arm
• A rash or eczema on the nipple or around it

Courtesy: pinkribbon.org.pk