Be your own medical advocate?

Melly, 53, knew very little about cancer before her diagnosis – other than at late stages it is a terminal disease, treatable but not curable – but more frightening than her diagnosis and upcoming surgery was the general attitude by her treating team that she was capable of making an informed decision about ongoing treatments by reading a few pamphlets.

“I was a basket case and so was my husband,” sighs Melly. “The pamphlets were designed for early stage cancer – not a late stage like I had - and I was disgusted at how these pamphlets almost made cancer seem like a normal sort of thing to have.”

“Well, it may be to the medical profession, but it certainly isn’t for me.”

“I know that cancer is now being treated like a chronic disease – similar to diabetes,” says Melly, “but having already slipped through the cracks by naively believing that if I had cancer it would be picked up early by regular check-ups, I imagined all sorts of terrible things happening to me if I continued to leave things in the hands of the experts.”

“Just about everyone I came across after my cancer diagnosis has advised me to be my own advocate and to challenge the doctors at every move,” says Melly, “but how on earth can we be expected to educate ourselves to the same level as the experts in the limited time we have before a life-changing decision has to be made?”

“There are some incredibly knowledgeable members of my support group who understand medical terminology and have the research skills necessary to sift the wheat from the chaff,” says Melly, “but even they admit at times that they can’t answer every desperate question we ask them.”

“I have never been interested in medical matters, and my husband is even more of an ostrich than I am,” sighs Melly. “I try very hard to understand treatments and prognoses -if I do that, or something else, which has better prospects – but my eyes glaze over when I try to plough through all the articles and personal stories about cancer.”

“Frankly, if I were to rely on myself for advocacy I’d have a fool for a client,” sighs Melly. “I know that doctors are human and mistakes get made – which is why I was diagnosed so late in the day – but I really don’t want to spend what remains of my life being suspicious of what my doctors are doing and pretending I’m a lawyer who knows everything about cancer.”

“I’ve decided to follow my gut,” says Melly. “I feel sometimes that even doctors throw out their text books and follow their gut about things. Why not me, too?”

lumpy, swollen itchy breasts

When Elina, 34, developed an itch on a left breast that was already lumpy and swollen -- in contrast to a right breast that was perfectly normal -- she feared the worst immediately and it wasn't until much later that she joined the dots between her recent weight gain and this new development.

"I saw my doctor immediately and had an ultrasound scan taken -- preliminary to having a breast X-ray -- and as nothing malign came up I was advised to chill out and come back later if the symptoms persisted."

"I know that doctors are busy and 99% of the stuff we see them for is trivial or imaginary," says Elina, "but I expected a bit more advice than that."

"I was particularly going crazy from the itch, trying all sorts of creams without relief," says Elina, "and in desperation I turned to the Internet for advice -- which is not always a good thing to do as you either find something that scares the wits out of you, or someone who is trying to cash in on your misery by selling you something useless or dangerous in other respects."

"Well, I found plenty of stuff that scared the wits out of me because an itchy breast, apparently, is one of the signs of breast cancer, as is a swollen, lumpy breast and discomfort on one side," sighs Elina, "and I started to think that perhaps I should get a second opinion."

"As I familiarized myself with the other signs of breast cancer, though, I calmed down."

"There was no lump or mass present in my armpit, there was no nipple discharge, there was no nipple retraction, there was no change in the appearance of the breast or nipple (no redness, veins or dimples), no hot sensation in the breast, and certainly no weight loss, bone pain, skin ulceration or swelling of one arm)."

"I already knew, of course, that many women have one breast bigger than another and although my breasts had always been the same size I rationalized that as a woman gets older it's not extraordinary that her breasts change in size and shape, and that there’s nothing to be gained from wondering why a left breast rather than a right breast decides to change -- it may have something to do with the way I sleep or a natural left leaning similar to the way men dress to the right or left.”

"Finally, because I had gained quite a bit of weight over the year," explains Elina, "I concluded that this, rather than anything else, may account for the swollen and lumpy left breast. That extra food I’d been eating had to go somewhere!"

"But what about the itch?"

"I removed my bra and took a good look at my breasts and saw a pressure mark across my left breast, right across the nipple, where my bra had squashed my breast."

"I had read somewhere that the best thing you can do for your breasts is to let them hang free," laughs Elina, "and even though the thought of flopping around without a bra was pretty scary, I decided to give it a try."

"You know what? The itch disappeared overnight."

"I guess what I have to do now is to either lose my excess weight or buy a bigger bra, stuffing the right cup with cotton wool to compensate for its smaller size."

"Who would have thought that gaining weight would have resulted in such a silly health crisis," sighs Elina, "but that's what happens when so much media attention is given to breast cancer -- everyone imagines that the slightest change in their breasts is something sinister."

"I'm sure bowel cancer is far more prevalent than breast cancer, and I can understand now why it’s not given as much media attention -- the doctors couldn't stand it," laughs Elina. "With so many fatties around these days, suffering frequent changes in bowel movements, anal itches and endless gas, who'd want to be a doctor dealing with an endless stream of patients worried unnecessarily about bowel cancer?"

"Breast cancer scaremongering is, in contrast, so much nicer, cleaner and easier to deal with," says Elina, "but I have to accept that despite the lucrative aspect of the breast cancer industry it does pick up on early cancers in a minority of women and that's a good thing I suppose.”

“Too bad about those of us destined for bowel cancer!"