The other side of breast can­cer

Pa­tients meet­ing the un­met needs

Kuwait Times - - LOCAL -

KUWAIT:

You might have been part of a breast can­cer (BC) marathon or heard about the lat­est aware­ness cam­paign pro­mot­ing BC screen­ings. Maybe you have do­nated money to the cause, are a fam­ily mem­ber of a sur­vivor, or a sur­vivor your­self. Yet there is a high chance that there are a group of men and women liv­ing with the disease that you are not aware of - they are the “for­got­ten” pa­tients of metastatic breast can­cer (mBC). They are a group of brave in­di­vid­u­als who often live with feel­ings of iso­la­tion due to their metastatic di­ag­no­sis.

mBC is the most ad­vanced stage of breast can­cer, a stage in which the can­cer has spread beyond the breasts to other parts of the body such as the bones, liver, brain and lungs. In the MENA re­gion es­pe­cially, a high pro­por­tion of BC cases are di­ag­nosed at an ad­vanced stage. De­spite this, there still ex­ists mul­ti­ple mis­con­cep­tions around mBC con­sid­er­ing the lack of con­ver­sa­tion around it com­pared to the at­ten­tion, ad­vo­cacy and pol­icy fo­cus on the early stages of breast can­cer.

The lack of aware­ness around mBC has left many pa­tients feel­ing iso­lated and marginal­ized, Ad­di­tion­ally, the di­ag­no­sis of mBC has shown to have a huge psy­cho­log­i­cal and emo­tional im­pact on women and their fam­i­lies. Many sur­veys, such as the Cana­dian Breast Can­cer Net­works, re­flected that many pa­tients start to ex­pe­ri­ence anx­i­ety, iso­la­tion and de­pres­sion due to their di­ag­no­sis. This is in ad­di­tion to the high lev­els of fear as­so­ci­ated with the un­cer­tainty of the fu­ture.

In fact, one of the big­gest fears that women with mBC have is the im­pact that this disease will have on their fam­ily mem­bers, as most women with mBC are over 50 and are care­givers for chil­dren and/or other fam­ily mem­bers.

How­ever, de­spite the huge toll that mBC brings, it is im­por­tant that we re­mem­ber that it does not mean women with mBC have a neg­a­tive out­look on life. Rather, it is found that many pa­tients of mBC will do ev­ery­thing in their power to main­tain con­trol and live a full and long life as pos­si­ble.

But how can we help? How can we as loved ones, sup­port­ers, ad­vo­cates and pol­icy mak­ers help in re­duc­ing the anx­i­ety and fear? How can we help women and men with mBC have ful­fill­ing lives not in iso­la­tion? How do we meet the un­met needs of peo­ple liv­ing with mBC?

One of the most sig­nif­i­cant chal­lenges ahead in ad­dress­ing the needs of women and men with mBC is the need to cre­ate greater pub­lic aware­ness. It is essen­tial that peo­ple know mBC as the most ad­vanced stage of breast can­cer, and as dif­fer­ent from the ear­lier stages of BC. Height­ened aware­ness will gen­er­ate and en­cour­age con­ver­sa­tion along with sup­port on how to live with mBC on a day to day ba­sis.

Cul­tural taboos

Con­sid­er­ing the cul­tural taboos in many coun­tries, cul­tur­ally sen­si­tive in­for­ma­tion is also im­por­tant in help­ing women feel a greater sense of con­trol and strength.In fact, more in­for­ma­tion re­gard­ing cur­rent and fu­ture treat­ments and re­search on mBC should be read­ily avail­able and en­cour­aged within the coun­try.

Fur­ther­more, al­though not all women with mBC have a neg­a­tive out­look on life, many women ex­pe­ri­ence height­ened fear, iso­la­tion and de­pres­sion. Hence, more re­sources for psy­cho­log­i­cal coun­selling and sup­port, in­clud­ing aware­ness on ex­ist­ing sup­port ser­vices are needed. Ad­di­tion­ally bet­ter pa­tient-doc­tor com­mu­ni­ca­tion is also re­quired to aid women in gain­ing a sense of higher con­trol over their con­di­tion.

Lastly, apart from knowl­edge around mBC, greater knowl­edge about the ben­e­fits and risks of treat­ments, along with higher in­vest­ment on re­search on mBC are vi­tal. Ac­cord­ing to an in­ter­na­tional study only 5 per­cent of pub­li­cally funded re­search in the United States goes to­wards mBC.

In or­der to fully sup­port and ad­dress the needs of women and men with mBC, it is essen­tial that we con­tinue to carry on con­ver­sa­tions and en­cour­age aware­ness around mBC. We as a com­mu­nity, as loved ones, as fam­ily mem­bers and as breast can­cer sur­vivors must join hands to make women with mBC feel vis­i­ble and make time count.

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