Life after a mastectomy

There are 16,000 women who have had mastectomies and require a breast prosthesis in Ireland For the survivors of breast cancer…

There are 16,000 women who have had mastectomies and require a breast prosthesis in Ireland For the survivors of breast cancer and for those who have had surgery, there is a choice of breast prosthesis and mastectomy-friendly lingerie to help them adjust to their new form and to recover their femininity. Angie Mezzettireports

Most women regard their breasts as an essential part of their being and, in particular, their femininity. So how does a woman manage without one or both of her breasts when they are surgically removed in the course of treatment for breast cancer?

It is a difficulty that many women in Ireland are coping with in the aftermath of full or partial mastectomy (breast-removal surgery) in a variety of ways thanks to developments in breast prosthesis and a better range of prosthesis-friendly underwear.

Marie Moore volunteers with Reach to Recovery in Cork - a breast cancer support network of women for women who are going through breast cancer treatment and recovery.

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Moore had breast cancer surgery in 1990 and believes you can never assume anything about a woman's attitude to her breasts. "It doesn't matter what age she is, it can be as devastating to a woman in her 80s as it is to a woman in her 30s to lose one or both breasts. It is a huge invasion of your femininity and that has to be acknowledged."

There are estimated to be 16,000 women who have undergone a mastectomy and require a breast prosthesis or breast form in Ireland. According to Susan O'Carroll, clinical co-ordinator with Action Breast Cancer, it is crucial to a woman's recovery to have a correctly fitted prosthesis.

"Initially a woman is supplied with a light soft cloth or fibre prosthesis within 48 hours of surgery. It is usually fitted by a breast care nurse in the hospital and allowed to settle for the first six weeks of post-surgery recovery."

There are 14 specialist breast care units in the Republic and they will have a wide range of shapes and sizes to suit the woman.

"What usually happens is that a more permanent silicone breast form is fitted after she comes back for her check-up at which time the wound is checked and any psychological or emotional issues are talked about."

Smaller centres outside of these specialist units may refer a patient to a specialist fitting centre. Every woman post-surgery is entitled to her first prostheses and two specially fitted mastectomy bras free. These bras come with special pockets to keep the prosthesis in place.

After her surgery two years ago, Ger McAuliffe found it difficult to adjust to her prosthesis and says it was so heavy that she would often have to take it off but now she is well used to it. "Following the six-week check, the hospital referred me with a letter to a chemist that specialised in fitting them. I wasn't very well informed on what the options were about adding money to get a different style of bra. I didn't ask as you are just so grateful to have anything."

McAuliffe has recently had reconstructive surgery which she is delighted with. However, this kind of surgery is not for everyone, due to medical reasons or because some women may not want to undergo further surgery and anaesthetic, so for them the best option is a prosthesis.

The importance of choice for women post-surgery was one of the key findings of a survey conducted in 2005 by Action Breast Cancer in conjunction with DCU, according to O'Carroll. One of the most important issues that surfaced for women in the survey was "where" they were fitted with their first and subsequent prostheses.

"It is most important to have a comfortable purpose-built room, with good lighting and a full-length mirror," says O'Carroll.

Having a specialist breast cancer nurse to do the first silicone-type fitting is also a key factor in ensuring that a woman is satisfied with her new prosthesis. It is also important to have a good variety of shapes and sizes of prosthesis, she adds, as one size doesn't fit all.

"Some are pert, others more saggy and it will also depend on how much tissue has been removed. Surgery is not always clean and symmetrical and there will be grooves in different places."

According to Kate Watkin of Trulife, one of the largest manufacturers and suppliers in Ireland which make these breast forms in Tallaght for distribution worldwide: "There are 30 different types of breast forms/prosthesis and they come in different shapes, different textures of silicone and a variety of colours and they also come in different weights."

The other main supplier is Amoena and both brands are carried in most hospital breast care centres and specialist fitters. Anita is also a popular brand.

It is recommended that prosthesis breast forms be replaced every two years. "The fitting of replacement prosthesis is equally as sensitive as the first fitting and should be treated as so," says O'Carroll. "Eighty per cent of women who are diagnosed with breast cancer are over 50. As life goes on our bodies change and so the prosthesis that once fitted will need to be changed."

Certain drug treatments can have an effect on the body either through weight gain or weight loss and this will alter a woman's shape. "It is most important that the woman has a correctly fitted bra," she adds, "as most of us wear an incorrect size bra and these are usually too small."

Replacement prosthesis and two bras are free if you have a medical card and these can be prescribed by a GP. Bras, replacement prosthesis and swimwear may also be covered by the VHI depending on the plan. All medical purchases can be claimed against tax. Vivas Health pays €300 towards surgical bra/prosthesis, breast prosthesis or surgical swimsuit. Quinn Healthcare provides a full refund on all schemes, not subject to an excess. Two subsequent prosthesis are allowed per membership year.

Ger McAuliffe uses the internet to order bras and swimwear: "Mastectomy swimwear on the web is great. Some of the shop stock was a bit hickey and I could not find any that would give me the right coverage and shape. I got some great tankinis online and was able to ring the suppliers for advice and the stuff came the next day from the UK." She got mastectomy underwear online too. "I had no cleavage, so anything with a bit of lace to give back some femininity was welcome."

One of the biggest worries women have, according to Maeve Derham, is that the prosthesis might pop out or that anyone might see it. She had surgery for breast cancer 16 years ago. "They needn't worry," she says, "because there are wonderful bras out there now. Marks & Spencer has started doing a range of post-surgery underwear which is very sexy and well priced and they also do swimwear.

"I am sure you have seen people on the beach and not noticed they were wearing prosthesis."

Derham says she felt bad about losing part of her breast. "I was well endowed and loved wearing low cut necklines so there was a lot of adjustment."

She had a lumpectomy so ended up with one normal larger breast and a smaller one. Because she liked to walk and exercise, Derham had a lot of neck and shoulder pain some time after surgery. Her doctor gave her the choice of a breast reduction on her other intact breast which she opted for to restore some balance and to ease the strain on her shoulder. "It is great nowadays because there are choices. Women can have reconstructive surgery and there is still so much out there."

Marie Moore says that some department stores such as Brown Thomas in Cork have specialist mastectomy wear fitters in their lingerie departments but advises booking an appointment to make sure the trained fitter is there and recommends not to go on a busy Saturday as you need plenty of time.

She also recommends that when you go to the fitting, wear a top made with fine material to make it easier to pick up any discrepancies in the shape.

Moore has not let the wearing of a prosthesis get in the way of her exercise programme and she swims a couple of times a week. "I am more conscious of the neckline now and I go to a single dressing room, not the communal ones. Some women also have to be aware of a wound under the arm where glands have been removed but there are T-shirt type swimsuits you can get.

"There was a time when you were just so glad to be alive and to survive the surgery but things have come a long way. Women can now get nice lingerie and cami-tops for their prosthesis that are just as glamorous."