Battle after breast cancer

8/10/2008

They've lost their breasts, but not their voices. JANINE RANKIN spoke to a handful of the estimated hundreds of breast cancer survivors who feel cheated that the promise of a breast reconstruction following life-saving mastectomies has been broken.

Lorraine Green hates bathrooms with big mirrors.

Shopping for clothes reduces her to tears.

The Palmerston North woman wants to celebrate her sister-in-law Shirl Strom's good fortune in attracting an anonymous donor, who paid for her breast reconstruction in private.

But to see her showing a hint of cleavage is bittersweet.

Hers is a lop-sided image that she just can't bear, and she doesn't like having to talk about it either.

"I know I'm not the only one in this boat.

"After all you go through to get here, to have to bare your soul to whoever, to get what should be yours, the completion of the original surgery, is just too much."

Mrs Green is a two-time breast cancer survivor.

The first time, 12 years ago, aged 42, the wife and mother had a lump taken from the left breast.

But two years ago, the disease was back, in her right breast, eventually leading to a full mastectomy.

Facing a course of chemotherapy and radiotherapy to follow, and not wanting to delay, she wasn't a good candidate to have reconstruction undertaken at the same time.

The prospect of change in public hospital waiting lists for surgery, including post-cancer treatment breast reconstruction, was in the wind, but she believed she was on a promise.

"When I had the surgery, the focus was on treatment, not on the lost breast.

"I didn't think it would bother me.

"I know some other women have gone through a mastectomy and been fine about it.

"It was only when I finished the treatment that it really hit home."

Her referral to Hutt Hospital, which provides plastic surgery services for the lower North and upper South Islands, was made at her insistence and without much optimism.

As expected, her case was returned to her GP, with the standard, but in this case rather inappropriate advice, that if her condition got worse, she could be re-referred.

The Hutt Valley District Health Board has little other choice - it hasn't got enough theatres and staff to meet the demand for reconstructive surgery.

It has four new theatres on the building list for 2011, and is trying to get two theatres complete and staffed by October next year.

Meantime, Health Ministry rule changes made in 2006, means it can't put people on a waiting list unless it knows it can deliver the promised surgery within six months.

In the past two years, it hasn't carried out any delayed reconstructions at all.

Within the past few weeks, it has met other boards, including MidCentral Health, asking if those boards could step up their volumes of minor surgery to free up more capacity at Hutt for more complex cases from around the region.

MidCentral Health said it had no more capacity in its theatres to help.

The others, except Whanganui, made the same reply.

That means the only women who get new breasts through the public health system are those who have the rebuild included in their original cancer treatment surgery.

Some of them don't even have cancer yet.

The ability to genetically predict women at very high risk of developing breast cancer has created an increasing demand for well women to have their breasts off and new ones created.

"Certainly, genetic testing and women wanting prophylactic mastectomy is exacerbating the situation," says Hutt Hospital service manager for plastics, Carolyn Braddock.

Which leaves Mrs Green feeling less than whole, dependent on prosthetics to help her present a balanced front to the world, unwilling to wear tops with even a slight v-neck, when the shops are full of cleavage-displaying fashion, and with little hope that things will change.

"I'm at the stage now, if I can't get a reconstruction I would rather have the other breast removed."

Meantime, she would never be seen in public without a prosthesis.

All women who have breast cancer surgery qualify for a subsidy to cover the cost of a prosthesis and bra.

It's worth $600 the first time, with an additional $400 every four years after that.

It's a choice that satisfies many of the 100 women in the district that are diagnosed with breast cancer each year.

All of these women qualify for a prosthetics subsidy.

Around half have breast- preserving surgery, while the other half have a mastectomy.

Like many other women, Mrs Green has knocked on MP's doors and rattled whatever cages she can.

For the moment though, she's waiting for the outcome of a MidCentral District Health Board suggestion to try a referral to Hamilton.

The situation there isn't quite as despairing.

One of the original campaigners for the rights of women awaiting a breast reconstruction finally had her surgery done up there late last year.

Formerly from Ashhurst, Raewyn Calvert had been waiting 22 months for a reconstruction, when 30,000 people were culled from waiting lists.

Her outrage was the catalyst for Black Pearls, a calendar of women who'd lost breasts, which was presented to MPs at the end of 2006.

She says the surgery was a big deal.

And it is major surgery - taking hours of theatre time and weeks of quite difficult recovery.

But it was worth it, she says.

She feels whole, she feels womanly again, and she has regained some of her self- confidence.

It's the outcome she wants for other women who feel the same way.