Inside Issues of concern 4 Ask the Expert 6 Member Group profile 11 Mini-Fields 2010 12 Thank you 14 the BEACON Reviews 15 Breast Cancer Network ’s Magazine Issue 53 Summer 2010 Dates for your diary 16 ISSN 1834-5921 Focus on: Breast reconstruction

Reconstruction: no right or wrong way

This issue of The Beacon of Sunraysia Picture courtesy Daily, Mildura revisits a topic we have considered before – breast reconstruction – as it continues to be of interest to our readers. New surgical developments evolve, newly diagnosed women are considering their options and some women are revisiting this even though they are years down the track from their breast cancer diagnosis.

There is no right or wrong way for women to approach reconstruction. However, we The Pink Lady was seen in communities all around Australia, in October. hope their decisions are based Liz Martin and her daughter at their Mini-Field at Mildura on the Murray River. on good-quality information, a discussion of the full range of from women who have ‘been registered our 50,000th BCNA commitment and energy they options and, most importantly, there and done that’ (or not), member! have given to BCNA and our each woman’s preferences. and encouragement to do what I always think about the size of work this year. Unfortunately, it seems the is best for you, while pointing our membership with mixed Finally, I wish all our readers decisions women make are you in the direction of further feelings – sadness that there are happiness and love, and a year sometimes limited by a lack of resources that might help. so many of us, but satisfaction ahead full of special moments. availability of services in the I would like to particularly in knowing that we can reach so Lyn Swinburne public hospital system and thank all those women who many women and men, and that Chief Executive Officer where they live. sent in their articles. We were we are linked together. BCNA is passionate about overwhelmed by the volume of While it’s a club none of us would reconstruction being considered the responses and interest. have volunteered for, hopefully part of a woman’s treatment, if For some of our readers, this year BCNA offers strength, a sense of that is what she chooses, rather will have been a challenging one resilience and connectedness, than as a cosmetic ‘extra’. and they will be pleased to wave and some inspiration to all of us The information offered in this 2010 goodbye and to turn their on our breast cancer journeys. issue of The Beacon is consistent sights towards a new, healthier At the very least, women should with BCNA’s philosophy around year ahead. know they are not alone! empowerment of women. We It has been another busy year I would like to thank our offer you, the reader, the latest for BCNA, one in which we can dedicated and energetic Board We wish all our readers clinical information, a range feel proud of our achievements. members, staff, volunteers a happy, safe and healthy of responses and experiences Significantly, we have just and supporters for the extra festive season and new year. www.bcna.org.au Summer 2010 1 BCNA’s Priorities from the Minister Herceptin

Following the federal election research to build a world-class women diagnosed with breast survey in August, The Beacon asked cancer care system in Australia. cancer. This complements the In July this year BCNA, with the Health Minister Nicola Roxon The Gillard Government will Government’s $560 million support of Cancer Australia, to outline the Government’s continue to support women investment in new or upgraded surveyed women with HER2- priorities for breast cancer for with breast cancer, their families cancer centres in regional positive early breast cancer the next three years. Here is the and carers through initiatives and rural communities across about their experiences with Minister’s response. including providing funding Australia. the drug Herceptin. to Breast Cancer Network The establishment of Cancer The survey was designed to The Gillard Government is Australia, digital mammography Australia as a single national inform us about women’s strongly committed to the equipment for BreastScreen cancer control agency will draw heart health during their prevention, treatment and Australia, reimbursements for on best practice. The agency Herceptin treatment and quality care of women with external breast prostheses, will maintain a substantial whether they received regular breast cancer. funding for the McGrath commitment to breast cancer heart monitoring. Heart Breast cancer is the second Foundation specialist breast as it delivers the Government’s problems can be a side effect most common form of cancer care nurses, $168 million over broader cancer programs, of Herceptin for a small number in females behind lung cancer, four years to subsidise the research priorities and improved of women. with more than 12,000 Australian breast cancer treatment drug health outcomes for all Our results found that nearly all women diagnosed each year. Herceptin, and a survey to Australians with cancer. women who responded (99%) help better understand the Australia has made significant I would like to take this received heart monitoring. progression and treatment of improvements in diagnosing and opportunity to wish readers of Seventeen women (6%) breast cancer. treating breast cancer. The Beacon and everyone at said they developed a heart Since 2009, we have committed The focus on rural and regional BCNA a Merry Christmas and all condition which required $2 billion in infrastructure, areas will continue with ongoing the best for 2011. stopping their Herceptin medicines, screening and funds for supporting rural treatment. However, at least eight of them were able to resume Herceptin after receiving treatment for their heart condition. Of particular concern was the finding that 40% had to pay for their heart monitoring tests, with some women paying up to $300 per test. BCNA was thrilled to be invited to present the findings of this survey at a major oncology conference in in November. This demonstrates the impact BCNA members can have on influencing the breast cancer agenda. To read a full report of the survey results, visit www.bcna. org.au > News > Resources > Research reports. BCNA Chair Marg O’Donnell, Prime Minister Julia Gillard, Health Minister Nicola Roxon and BNCA Chief Executive Officer Lyn Swinburne at the 2010 Field of Women LIVE.

2 Summer 2010 Breast Cancer Network Australia Types of reconstruction

Breast reconstruction surgery recreates the shape of a breast following mastectomy or, less frequently, breast conserving surgery. It can be performed using implants, your own tissue, or a combination of both. Most types of reconstruction will involve more than one surgical procedure. You can also have a nipple reconstruction or tattoo Images from our My Journey Kit. to create the look of a nipple.

Implants skin and stop it from stretching to the chest wall’s blood supply. and donor sites. There is also a Silicone or saline implants can enough to accommodate an You may also hear of ‘perforator small risk with a free flap that be inserted under the chest implant. flaps’. These involve removing the breast tissue may die (due muscle onto the chest wall. skin and fat, without muscle, to a lack of blood supply) and Usually, a tissue expander will be Tissue flaps from the abdomen (DIEP or another operation may be inserted first to stretch the skin Tissue flaps use your own skin, SIEA flap) or buttock (GAP flap) required to remove it. and muscle to accommodate fat and muscle to form the shape and attaching the blood vessels Tissue flaps may not be suitable the implant. The expander is of a breast. There are two main that feed the tissue to the chest for women who have other filled over a period of weeks types of tissue flap procedures – blood supply using complex health conditions, such as or months by injecting it with ‘attached flaps’ and ‘free flaps’. microsurgery. diabetes. saline about once a week. Once Attached flaps use skin, fat Skin and fat tissue from your the expander has reached the and muscle from your back healthy breast can also be Nipple reconstruction desired size, you will require (latissimus dorsi) or abdomen used to create a new breast. After breast reconstruction, you another operation to remove the (TRAM flap). A portion of fat and This is called breast sharing may like to have a new nipple expander and replace it with an muscle is tunnelled under the reconstruction. created or tattooed. Nipples implant. skin from the back or abdomen can be made using tissue on The main advantage of a tissue to the chest to form the new the new breast or a skin graft The main advantage of flap reconstruction is that it breast. The flap remains attached from another part of the body, implants is that the operation is produces a more natural breast to its original blood supply. A such as the inner thigh or labia. relatively simple and recovery shape, which will change as saline implant may be inserted Once the nipple is created, the time is usually short. The main your body changes. The main behind it to increase the size of area around it can be tattooed disadvantages are that it can disadvantages are that surgery the breast. to match the colour of the other be difficult for the surgeon to and recovery times are longer breast’s areola. Some women match the shape of the existing Attached flaps may not suit you than for implant surgery, and choose just to have a nipple breast, the new breast may not if you don’t have enough tissue you will have scarring to the tattoo, without any nipple feel natural and it won’t lose or on your back or stomach to form donor site as well as the breast. reconstruction. Because the new gain weight as your body loses a breast. Latissimus dorsi procedures breast has little or no sensation, or gains weight. Potential risks Free flaps are similar to attached can sometimes result in loss tattooing is usually painless. of the surgery include infection flaps, but the skin, fat and of arm strength, and you may in the breast and a build-up of muscle is detached and removed lose strength in your stomach A list of resources for scar tissue that may pull the from the abdomen (free TRAM muscles, or be at increased risk women considering breast implant out of shape. Implants flap) or buttock (gluteal flap) of hernia, with a TRAM flap. reconstruction is available may not be suitable for some and then reattached to the chest Potential risks of flap surgery at www.bcna.org.au > News > women who have radiotherapy using microsurgery to attach it include infection in the breast The Beacon magazine. treatment as this can harden the

www.bcna.org.au Summer 2010 3 Issue of concern

Women’s experience of breast reconstruction

Breast reconstruction should be The high out-of-pocket cost for a reconstruction. and did not want to go on a considered part of the treatment of private surgery means this We were surprised, therefore, waiting list. Our findings may program for breast cancer is not a realistic option for to find that 94% of survey not be truly representative of patients, not an optional extra some women – 28% of survey respondents received their what is happening in the wider for those who can afford it. respondents who have not had surgery within two years of going community. BCNA will carry – BCNA survey participant a reconstruction said they could on a public hospital waiting list, out further work to determine not afford it. whether or not this is the case. Over the past few years, many and 82% were within one year. women have spoken to us about We are unsure why out-of- I had heard that it took years Satisfaction with challenges they face with breast pocket costs are so high for through the public system so I was reconstruction – long waiting some women. It may be that surgery outcomes very surprised to have the process lists in public hospitals and Medicare rebates do not Nearly 75% of women who had started within 6-8 months. high out-of-pocket costs in the accurately reflect the cost of this a reconstruction were happy private system, even with private type of surgery, especially for Of 18 women on a waiting list with the outcome, rating their health insurance. Some have also more complex procedures which at the time of our survey, satisfaction level at 8 or more. spoken of their dissatisfaction can take seven or eight hours 13 had been waiting less than 8% were unhappy, rating their with the outcome of their of operating time. It may also 12 months and none had been satisfaction at less than 5. reconstruction surgery. be that private health insurance waiting more than two years. My reconstructed breast does (PHI) companies are not entering With support from Cancer There is, then, a considerable not look or feel normal in any into ‘gap cover’ agreements with Australia, BCNA recently discrepancy between what way. It is cold and hard and is an a sufficient number of plastic conducted a member survey women have told us (waiting odd shape. surgeons and anaesthetists, to learn about their personal times of up to 10 years) and leaving women to pay the gap experiences with breast what our survey found (waiting Women said some of the best between the Medicare and PHI reconstruction. We were times of two years or less). things about their surgery were refunds and the specialists’ fees. overwhelmed with the response As only 20% of our survey feeling and looking normal again, no longer having to wear – 462 women completed the Waiting times in respondents had their surgery survey. Some (70%) have had a prosthesis, and increased self- public hospitals in the public system, we think reconstruction surgery; others our survey may have failed to esteem and confidence. (30%) have considered it but not A number of women have reach women who could not It has given me my life back, proceeded for various reasons. contacted us complaining of afford to pay for a reconstruction waiting times of up to 10 years restoring most of my self-esteem I didn’t go ahead as the waiting and confidence as a woman. lists were too long and I was told The worst things included it would cost more than $14,000 pain, long recovery times from privately. surgery, and scarring. Out-of-pocket costs To read a report about the Eighty per cent of women who survey’s findings, visit www. completed our survey had their bcna.org.au > News > Resources surgery through the private > Research reports. health system. Nearly half of BCNA will continue its work to them (40%) had an out-of-pocket improve breast reconstruction cost of more than $5,000, with services for women and will some paying more than $15,000. report back to you in 2011 via our website and The Beacon. The worst thing about my A postie from Australia Post delivers the surgery? The expense! 50,000th My Journey Kit to Teresa Paolilli.

4 Summer 2010 Breast Cancer Network Australia Reconstruction

Not all plain sailing Waiting game I was 30 when I found a lump in my left breast. The youngest I was diagnosed with breast of my four children was four cancer when I was 32. I wanted months old, and as I was to have the reconstruction breastfeeding him I assumed that at the same time as the had something to do with it. mastectomy but my surgeon My husband and I went off said it was better to wait. to see the doctor and, to my For the next 12 months I walked surprise, I was told I had cancer. around with one e-cup breast I had a left breast mastectomy, and the biggest prosthesis I and going through the public could get! I read anything I hospital system, was told I could get my hands on about would be put on a waiting list reconstruction, consulted two to have a reconstruction. plastic surgeons and decided on There was no doubt in my the TRAM Flap reconstruction mind, even at that time, that method. I felt totally prepared. I wanted to rebuild my breast What I didn’t expect was that Kirsty and her partner. to something that I was something may go wrong. comfortable with. went straight back to theatre for and still need to have the left Initially it went well and looked surgical debridement. I was left breast reduced. I know I will I went a long while with only great; a fl at tummy and a perfectly with a gaping hole, had to have be happy with the end result one breast, and although I shaped breast. However, after a skin graft, and dress the wound compared with the concave scar lived with it I never felt very being released from hospital, three times a day for the two left from the mastectomy. confi dent about myself. despite a fever, part of the wound months and take antibiotics. during that time it was found I on the breast was black and I Full recovery was about eight had the BRAC2 gene mutation, knew something wasn’t right. I have a defect in the weeks and it was defi nitely and I was told the chances of The surgeon said part of the fl ap reconstructed breast (which my painful for the fi rst three, but you the cancer occurring in my had died and was infected and I surgeon says can be repaired), soon forget that! remaining breast were high, so I Kirsty, QLD decided to have my right breast removed and reconstructed. Making the most of it! I was on the waiting list for 2½ years. I had a TRAM Flap In September 2005 I was I told the surgeon I didn’t care procedure and used my diagnosed with early breast what size breast he made, stretched stomach (having four cancer and underwent as after having F cup breasts children helped me with that!) a partial mastectomy, I would be happy to have a to make my new breasts. reduction of the other breast. chemotherapy, radiotherapy It has been six months since and hormone therapy. I found the pain after surgery my reconstruction and I am so was tolerable and I only needed happy with the result. Although Two years later I had a full right paracetamol on the fi rst day. mastectomy when a routine it was sore for a while, the results The most uncomfortable thing mammogram showed the cancer are wonderful and it is fantastic was having to be in a room heated had returned. I was left with an to have a fl at stomach again! to 28°C for 24 hours to help the ugly scar because my previously Using my own tissue has right breast, and a left breast circulation to my new breast. made my breasts feel just like irradiated skin did not heal well. reduction and nipple tattoo. I am delighted with the results my old ones, only with a few I decided to have a breast I chose a free TRAM fl ap and would recommend it added scars. I am a week away reconstruction because I found operation because it would give to anyone wondering if it is from the fi nal stage of having the 600g prosthesis awkward me the most natural result as worthwhile. I now swim with my nipples done, and then and heavy and it constantly well as a ‘tummy tuck’ that would my granddaughter without tattooed, and hopefully this will reminded me of my cancer. reduce the apron of fl esh left worrying about my prosthesis be the last time I need to be in My surgeon performed a free after a caesarean section some fl oating away! hospital for a very long time! TRAM fl ap reconstruction of my 32 years ago. Andrea, SA Kylie, QLD www.bcna.org.au Summer 2010 5 Reconstruction Ask the expert dr Kerry Sherman

Dr Kerry Sherman is a types of reconstructions and ask researcher and senior lecturer to see photos. It is also important in health psychology at that whatever decision you make Macquarie University, . is made for yourself – do not Her research focuses on make it for anyone else. You have the emotional wellbeing of to live with that decision. Talk to Wendy women with breast cancer as many people as you can, but and developing information make the decision that you think Comfortable and resources to help them. is best for you. She is currently developing a Some women are physically in my skin decision aid to help women unable to have a reconstruction. A breast cancer diagnosis in who are considering breast What can these women do to help 2006 meant a mastectomy. Dr Kerry Sherman reconstruction following a their emotional wellbeing? breast cancer diagnosis. I discussed a reconstruction Speaking as a psychologist, with my wonderful breast care The more important issue is How important is body image I would strongly advise any nurse and my female surgeon, the timing of making a decision to a woman’s self-esteem and woman who is not feeling but decided against it as I was about reconstruction. For an emotional wellbeing? good about herself, or who is 60, had been separated for immediate reconstruction, feeling distressed, to seek some many years and had no special For most Australian women a woman may have only one professional help. A psychologist man in my life at the time. there is a strong emphasis on or two weeks from diagnosis to can help you develop skills Importantly, I was comfortable physical appearance. Research breast cancer surgery – that is a to manage your feelings and in my skin and did not need to shows that our perception of short time in which to make a big change the way you feel about do it for myself. ourselves – our body image – decision. If women are not well yourself, including accepting the is critical to how we feel about Four years on I do not regret informed at the outset, they may changes to your body. ourselves. It tends to be more my decision. In the early days not make the decision that is best important to us than our other I twice forgot my prosthesis for them and may be less likely to Do women who decide not to attributes or skills. when going to work – the be happy with the outcome. have a reconstruction always adjust well? fi rst time I stuff ed my bra with What can be the psychological tissues and the second time I What advice do you have for The way any woman with breast benefi ts of breast reconstruction? went back to retrieve it. women trying to make a decision? cancer adjusts to her treatment Some of the benefi ts include My advice is to be well informed will depend on a number of I am content with myself and enhanced body image and about the full range of options aspects, including whether she have had relationships with increased quality of life. Research available to you. do not rely on a is satisfi ed with the decision she caring and considerate men shows that women who have a 20-minute consultation with the made about reconstruction and (my choice not to continue reconstruction often feel better surgeon for all your information her ability to accept her new the fi rst and the second is still about themselves because they and do not make your decision body in the way it looks and going well). The lack of a lump feel they have an appearance too quickly. Consider all the feels. Any woman having trouble of fatty tissue does not seem to that is not so diff erent to how options and the possible side accepting the changes to her be a problem at all. They accept they looked before breast cancer. eff ects or complications that body may like to seek support me, as I accept me. Does timing make a diff erence – could arise from each of them. from a counsellor or psychologist. I have been given the fl exibility immediate v delayed? Are you prepared to live with A list of resources on breast to have a reconstruction should Our research does not suggest these? It is really important to reconstruction and an article I decide I want one, but so far that the timing of reconstruction understand what the outcome about dr Sherman’s decision aid I have no intention of going surgery makes any diff erence to of any surgery might be, so talk are available at www.bcna.org.au down that road. women’s emotional wellbeing. to the surgeon about diff erent > News > The Beacon magazine. Wendy, WA

6 Summer 2010 Breast Cancer Network Australia Reconstruction

Second time round

I was fi rst diagnosed with breast further fi ne tuning, i.e. nipples cancer in 1995 while pregnant; and areolas tattooed on. therefore reconstruction at the The only negative thing about time of the mastectomy was this reconstruction was that not an option. Instead I had a the donor site was my bottom reconstruction fi ve years later. – I couldn’t sit up for a month, As it was classed as elective although I was able to recline, surgery, I had to go on a public and walking was pretty diffi cult. system waiting list for a TRAM fl ap Now three months later, there is Annie reconstruction with donor tissue no pain except for an occasional and skin from my abdomen. dull ache in the new breast. I am Turning The experience was horrible, walking fi ne and am in a much I felt like Frankenstein’s monster, Debbie better frame of mind due to the around the outcome was not much better aftercare the doctors have given. The doctors were marvellous, I had a TRAM Flap bilateral and the aftercare was terrible It took a second time round to more compassionate and seemed reconstruction done in – as was the fi nished product. get the result and compassion I to care more than last time (a November 2008. My second breast cancer was had hoped for the fi rst time, but diff erent hospital this time). It has meant a great deal to this year, but this time I had a I am still here to tell the tale and The fi nal result has been fantastic me. I became depressed when skin-saving mastectomy and that is the most important thing. – there are plans in the future for trying to cope with using a reconstruction at the same time. Debbie, VIC prosthetic breast, and these feelings were almost too much to bear. So I began doing Taking time to make my decision some research on the internet starting with the Aussie Breast Cancer Forum and then I was told that I had cancer a had the permanent implants other more formal medical week before my 46th birthday. inserted. I feel that I look just internet sites. Armed with this I went on to have bilateral fabulous, and it has given me an information, I went to my half- mastectomies (exercising my incredible sense of wellbeing. yearly appointment with my choice to have both removed They are beautiful breasts! breast surgeon and told him at the same time) and Both surgeries for this procedure that I was looking into TRAM chemotherapy. were uneventful. Flap reconstructive surgery. The only negative aspect I can He immediately recommended At that time I did not want to think of is having to wear a crop a surgeon in Sydney. have a reconstruction; in fact, top for a few weeks. This surgery, although diffi cult, it was something that I said I Alison painful and expensive, was the would never do. I just wanted to Having the tissue expanders in best thing that I could have get fi t and healthy again, get my for about three months gave I then decided to get fi tted for done for myself. My self-esteem life back to what it was, and, as me an opportunity to ‘test drive’ a pair of prostheses. Suddenly I has improved dramatically; I was only just an A cup, I didn’t the size. At fi rst I felt too busty, looked great, but unfortunately I have my cleavage back! I’ve feel that I had too much to lose. but this gave me time to adjust I found them hot and recently had the nipples done Also, I am a theatre nurse and I to having a fi gure. As a result, I uncomfortable to wear. and now, instead of having did not want to undergo, what feel totally comfortable with the Two years after my the areolas tattooed on, I’m was to me, major surgery just for choice of permanent implants. mastectomies, I decided thinking about getting roses a fi gure. I have a fi gure that I feel is to have a reconstruction; a tattooed over my breasts For the next year I didn’t wear perfect for me; it’s a great bilateral latissimus dorsi with (to give the aged care nurses a prostheses. I bought clothes that novelty having breasts! tissue expanders. I have now laugh when I’m 90)! hid my fl atness. I was just happy Alison, WA completed all the surgery and Annie, ACT to be well.

www.bcna.org.au Summer 2010 7 Reconstruction

The waiting game … reconstruction in the public system

I was put on the waiting list for Hunter New England Health ‘Most reconstructions are reconstruction but was told it in northern NSW was able to a three-stage process – was likely to be a five-year wait, launch a breast reconstruction reconstruction surgery, surgery even though I am only 23. service earlier this year after a to make any adjustments, and – BCNA survey participant plastic surgeon moved into the then nipple reconstruction and/ area and agreed to carry out or tattooing,’ Dr Dean told The The prospect of long public publicly funded reconstructions Beacon recently. ‘My aim is to hospital waiting lists for one day per month. This gives have this process completed reconstruction surgery is women an option to have their within 12 to 18 months.’ distressing for some women who reconstruction at a local public Dr Dean also runs a nipple tattoo undergo breast cancer surgery, hospital rather than travelling clinic once a month. especially those who cannot to Sydney. Depending on the ‘I am a firm believer in trying to afford to pay for surgery. hospital, waiting times are offer a comprehensive service,’ In recent years, the federal currently around 12 months. she said. ‘I like to make sure I and some state/territory In Adelaide, the Flinders see women through the whole governments have allocated Dr Nicola Dean Medical Centre (FMC) has process of reconstruction.’ additional funding to help run a comprehensive breast The services provided by Western reduce waiting lists. Some public reconstruction service since While waiting times for delayed Hospital, Hunter New England hospitals have also introduced 2007. FMC employs a full-time reconstructions were shorter Health and Flinders Medical their own initiatives. plastic surgeon, Dr Nicola Dean. when the service began, Centre give an indication of The Beacon recently contacted increasing demand for breast The appointment of a full-time what can be achieved in the three public hospitals to ask reconstruction surgery and a breast reconstruction surgeon public health system when what they do. We know there are higher number of immediate has had a remarkable impact. there is a willingness to improve others around the country that reconstructions have lengthened In her first full year there, Dr reconstruction services for offer similar services. waiting times for delayed Dean performed 72 breast women affected by breast cancer. In Melbourne, the Western reconstructions. Previously, reconstructions to 12-18 months. Certainly, the appointment Hospital has a specialist the hospital provided 10-15 There is no waiting time for an of a full-time plastic reconstructive surgeon, reconstructions each year. immediate reconstruction. surgeon dedicated to breast Mr Damien Grinsell, who The complexity of some It has also helped to keep waiting reconstruction appears to make attends outpatient clinics reconstruction procedures also times down. The current waiting a big difference to surgery rates fortnightly for consultation for affects waiting times. Many time for a delayed reconstruction and waiting times. Dr Dean delayed reconstruction. Other women are advised, or choose, at FMC is 3-6 months. acknowledges that hospitals times are available for women to have tissue flap need to provide a supportive requiring advice on immediate reconstructions, which can environment, including regular reconstruction. Consultation take a full day’s operating time Prosthesis access to operating theatres, in with a Breast Care Nurse is also (6-8 hours). This often means that order for a good reconstruction available, where women can scheme only one delayed reconstruction service to be run. view photos, tissue expanders Included with this issue of can be done per fortnight. BCNA hopes more hospitals will and breast implants, and discuss The Beacon is a flyer about BCNA is aware that public take on the challenge to improve any concerns. the Federal Government’s hospitals sometimes have breast reconstruction services Nipple reconstructions and External Breast Prostheses difficulty attracting plastic for women, and that more plastic tattooing are also offered, with Reimbursement Program, surgeons, who can earn a surgeons will follow the lead no charge to women. which provides refunds for great deal more working in of Dr Dean and others into the women who buy prostheses the private sector. public hospital system. following breast cancer surgery.

8 Summer 2010 Breast Cancer Network Australia Reconstruction

Time heals all wounds

I live in Geraldton in the middle of Western Australia, approximately 430 km from Perth. I was diagnosed with breast cancer in my right breast in December 2008 and following two lumpectomies decided to forgo radiation treatment and instead have a mastectomy.

Part of that decision was arrived at because radiation treatment is only available in Perth and I would have had to leave my young children and husband for six weeks to access it. I was lucky enough to be in a fi nancial situation to consider a breast reconstruction with a plastic surgeon in a private hospital. I didn’t realise how Suzannah with her daughters lucky I really was, until I met someone who had to treatment would not have been Unfortunately I got quite a in my left breast and decided to wait two years in the public possible without PATS. Having severe infection following this once again have a mastectomy system – that’s just cruel. I to travel to Perth so regularly procedure and needed to go and reconstruction. It was never considered not having a became a little bit of an ordeal back to hospital. The infection a lot easier the second time reconstruction. At 42 I felt that I but I got through it by reminding cleared up but the nipple round, though I continued to was still on the young side and myself that the worst was needed to be redone. Nothing is be plagued by drain pain and deserved to have breasts. actually over and the cancer had simple with me! infections. The mastectomy was a success been removed. All this time I was travelling up despite everything I am really and I woke up with much smaller Three months after having and down from Geraldton like a pleased with the fi nal product. breasts (the left breast had the expander inserted, I was yoyo and having time off from It is sad that I can’t feel touch in been reduced). After a lifetime back into hospital to have the work! Thank goodness for a those areas anymore and they of being big busted I was expander out and the implant sympathetic boss! can also be quite uncomfortable absolutely delighted! inserted. I actually found this One of the hardest things about at nights. However, the The fi rst part of my operation to be harder than the the reconstruction was the alternatives just didn’t appeal reconstruction was the insertion mastectomy and took longer drains after the surgeries. After to me and, as I said before, of an expander. Over the next than I expected to recover. all my surgeries I went home time heals all wounds. My eight weeks I travelled to Perth However, time really does heal from hospital still attached to advice to anyone considering a weekly to have the expander all wounds and I was soon back drain bottles. I frequently ended reconstruction is to make sure infl ated. The money tree had in Geraldton and back at work! up with painful infections. you are comfortable with your dried up by then so I was Three months later it was plastic surgeon as you are going grateful for the fi nancial support Unfortunately just as the time for my nipple to be to be seeing a lot of him or her! of the Patient Assisted Travel reconstruction was almost reconstructed and luckily Suzannah, WA Scheme (PATS). In fact my whole fi nished, I found another lump this was done in day surgery.

www.bcna.org.au Summer 2010 9 Reconstruction

A long journey

My breast cancer journey began Six months after that fi rst in August 2005. After diagnosis operation, I went back to hospital I had a left breast mastectomy, to have the expander removed followed by chemotherapy and and my right breast reduced. radiotherapy. It has been a long recovery, physically and mentally. The Along with this, I was given a physical side of it I could deal lot of information about breast with, but the mental anguish has reconstruction. I liked the idea; been diffi cult, and something it helped going through all the that will take time to accept. treatment knowing that one day While going through breast I would have a reconstruction. Jacqui and her husband Kevin celebrate cancer, there is a wealth of their 20th wedding anniversary at Uluru. I read all I could, spoke to women information and support from the who had had the diff erent sorts of community, family and friends, treatment, and waited until I was nervous but excited. However, needed to supply blood to the which is wonderful, but there is mentally ready for the operation. when I woke from the operation, reconstructed breast. no support or information for Sometimes I did consider not I was told reconstruction was The surgeon tried her best to see those of us when a reconstruction having it at all, but by the end of not possible. I do not know who if another artery could be used, is not possible. I have felt so alone 2008 I was ready. was more devastated, me or the but it wasn’t possible. in dealing with it. surgeon. I discussed the reconstruction She did insert a tissue expander, I have just passed my fi ve-year I would have with my surgeon I had been warned of possible but after months of injecting milestone, so there is much to – a tissue fl ap from the back internal scarring from the saline solution to expand the celebrate, but I do wonder if followed by a reduction of my radiotherapy; I did not have any skin, this option also had to be there are more women out there right breast. scarring, but the radiation had abandoned as the radiotherapy like me for whom reconstruction On the day of the operation I was badly damaged the main artery had damaged the skin’s elasticity. was not possible. Jacqui, SA With love and support

Having just celebrated two From that day on she advised me Unfortunately I did have long and painful recovery. What years with my new breasts, I to take care of my breasts, so after lots of problems; a massive helped me through this was a can honestly say it was the best a lumpectomy in 1993, a partial haemorrhage after a 10½ hour loving family, amazing care and decision I could have made. mastectomy in November 2007 op, back to surgery for another the nursing staff telling me what and a bilateral mastectomy in 4½ hours to reconstruct the vein wonderful cleavage I had. My grandmother lost one breast April 2008 I was already thinking that had not held – put down to At a later date the surgeon at 54 and the second at 84 and that a reconstruction at the same the six weeks radiation that I had wanted to give me nipples but she hated not having her breasts. time as the surgical removal of my 16 years before as this can leave I did not go back. I hear it is a After her fi rst mastectomy her breasts was the answer for me. the tissue and skin very fragile. relatively simple operation and body looked like she had been Medical advice was given freely, The amazing medical team they look great but as I am no mutilated. Those were the days most of it with caution as it was removed a vein from my foot and longer at an age where I would of the radical surgery – but she to be a massive operation. My skilfully replaced the damaged consider entering wet T-shirt survived. Her fi rst prosthesis husband felt I should not take vein and put me back together competitions, I can live happily was a bag of birdseed she made such a drastic step but was with again. There was concern that I without them. herself, and she was always me all the way, with love and could lose that breast, but the worried that if she perspired It was tough, but I came home support, once he realised that skill of the surgeons did not let excessively she would begin feeling and looking as I did when this was the path I had chosen. that happen. to sprout! She also hated the I entered that hospital, and I can I researched information, read I was in hospital for 23 days, lopsided feeling as we are a honestly say that it was the best all the pros and cons but still much longer than was initially family of big-breasted women. decision that I have ever made. decided to go ahead. thought necessary, and it was a Lynn, VIC

10 Summer 2010 Breast Cancer Network Australia Profiling our Member Groups Connecting young women in Geelong Linking

The Young Women’s Breast together Cancer Support Group is an Over the past 10 years a key informal social group that has part of BCNA’s mission has been been running in the Geelong to link Australians personally area since November 2007 for affected by breast cancer. women under 50 diagnosed We welcome new Member with breast cancer. Like many Groups to our network. They groups it was started by one now make a total of 284. woman’s need to connect with New Member Groups: others who could understand • Young Women’s Support what she was going through. Group – Tamworth, NSW That woman was Tammy • Mudgee Breast Cancer McDonald and here is her story. Support Group, NSW At the age of 32, while pregnant • BAGS (Breast Cancer and with my third child, I was Group Support), Strathmore, diagnosed with breast cancer. VIC Although my friends and family • Copper Coast (ASA) Dragon were amazingly supportive, I felt Geelong girls enjoying themselves at the Boat Club, SA the need to connect with others. Young Women’s Conference in Queensland. • Brimbank Breast Cancer I contacted the local support there were only a few of us but an occasion, so we arranged to Support Group, Delahey, VIC group and attended one of their the group has grown over the past meet at one of our homes. • Mt Warning Dragonboat meetings. I sat in the meeting three years. We have all benefited The night started quite formally Club, NSW room with my premmie baby in from each other’s knowledge, with introductions and chit chat • Rockhampton Dragon Boat my arms and a scarf on my bald experience, friendship and, most while everyone arrived. The Club, QLD head. I was easily the youngest of all, support. awkwardness soon disappeared as • Young Women’s Breast by 20 or 30 years. The group One of our members recently a member took it upon herself to Cancer Support Group, had a guest speaker who spoke underwent a prophylactic stand up and say ‘this is what we’re Launceston, TAS about osteoporosis prevention. bilateral mastectomy and here for’ and lifted up her top. • Yarrawonga Breast Cancer It was obvious to me that, even implant reconstruction and was A chain reaction followed though we shared an illness, Support Group, VIC asked by her employer if she was and within minutes we all our need for support and • Geelong Young Women’s prepared to talk to a friend who had our tops up, showing our information was different. Breast Cancer Support was trying to decide what type reconstructions. Lots of laughter Group, VIC I knew I had to find a group of reconstruction to have. and relaxed conversation specifically for younger woman – • Breast Cancer Support During our next group meeting, followed. By the end of the night, but none existed in the Geelong Group, Geraldton, WA when the woman’s dilemma was armed with the experiences area. Melbourne offered what I • The Doves, Castlemaine, VIC brought up, we realised that as of our group, the woman had needed, but the task of travelling a group we had a ‘smorgasbord changed her mind about the You can visit our website to find to Melbourne at night while of boob jobs’ and that our type of reconstruction she felt a Member Group, including having chemo and radiation was experiences could help. was right for her. support groups, in your state or much too hard. territory at www.bcna.org.au > A ‘Show and Tell’ session was By connecting with others who As it turned out I wasn’t the only About BCNA > Member groups. decided upon as a light-hearted had been through this process, one living in the Geelong area and humorous way to help this woman felt able to make an BCNA also has more than who wished to connect with other her. Our usual hotel location informed decision. That is what 50,000 individual members young women. In the beginning clearly wasn’t suitable for such our group is about. across Australia. www.bcna.org.au Summer 2010 11 Mini-Field magic in local communities

2010 was a bumper year for beetroot sandwiches and pink An important element of Thank you to all the 2010 Mini-Fields around Australia. cupcakes were set out on pink the Mini-Field event is the coordinators and their The magic started in October tablecloths. From a gathering acknowledgement of support supporters who spurred their and more than 300 Pink Lady at a picture theatre to drifts of that is available locally – many communities into action to displays coloured the landscape silhouettes across local gardens of our Member Groups took spread the word with great across every state and territory – the diversity was inspiring and the opportunity to let locals enthusiasm – without your to celebrate Australia’s Breast each paid tribute to women with know how their groups work the magic would not Cancer Month. breast cancer. support women. have happened. Providing opportunities for communities ‘The local hospital was an ‘We had a wonderful day and Once again the Mini-Fields to come together with a shared ideal location for our Mini-Field the best part of it was that we were a wonderful way for focus leads to laughter, quiet – we will be doing it there again now have three new ladies in our communities to come together contemplation, meeting new next year.’ – Judith support group.’ – Zoe to pay tribute to women and friends and most importantly families who have been affected further opportunities to provide by breast cancer. support for women and their The events were as diverse families. It is a vital way that as the communities they we can reach out and help represented. The variety was community members affected wonderful – from the month- by breast cancer. A Mini-Field long display at the Floriade in a local community results Festival in Canberra to the in dynamic and personal 20 silhouettes in a private connections that can transform garden during a special morning women’s lives. The commitment tea. There were gatherings of organisers is a precious in gardens and morning resource. teas in workplaces, displays ‘Thank you for asking me at roundabouts in country to share such a beautiful towns and municipal libraries, day.’ – Mary champagne corks were popping,

12 Summer 2010 Breast Cancer Network Australia ‘The women really enjoyed the day and got a lot out of it.’ – Debbie

Thank you to the Community Liaisons who added to the impact of Mini-Fields by sharing their personal breast cancer stories and making inspirational addresses. The Mini-Field events are enhanced by the support of our valuable partners. We acknowledge especially the wonderful support of our partners Bakers Delight and all the bakeries around Australia who baked delicious morning and afternoon teas, and Australia Post, the sponsor of Mini-Field of Women events.

Floriade, ACT www.bcna.org.au Summer 2010 13 Young Thank you women’s conference • Gail Gear – Morisset Ladies’ • St Columba’s Essendon, VIC We appreciate the The 2nd National Conference Golf Club Ladies’ Day, NSW • Stazy Give & Getaway financial support given to for Young Women affected • Green Acres Golf Club, VIC us by individuals, clubs, • Sussan Group by Breast Cancer was held organisations and companies • Jade Ryan, QLD • Tesselaars Tulip Festival, VIC on the Gold Coast in early around Australia. We would • Janet Hoyer, NSW • Tony Hamilton, VIC September. Around 150 young especially like to acknowledge • Janelle Trebbin, QLD Memorials women attended from across the recent help of the following • Jane Howard, VIC the country to meet and share We pay tribute to the lives of: outstanding supporters: • Jarrad Holmes, WA their experiences with other • Andrew Price, NSW • Jason Henderson, NSW • Anne Templar women and to hear from guest • Barbara Epstein – Pink • Jenny Horn, QLD • Annetta Zanon speakers about strategies to Ladies Christmas Golf Day, • Johanna McCall, VIC • Brian Ponting manage issues affecting them. • Darcy Brady Thirteenth Beach, VIC • Judy Dallas, TAS Topics included the latest • Fay Trickey • Barbara Richards, VIC • Julie Pegg, QLD treatments for young women, • Bella Blight, VIC • Kerry Palmer, VIC • Jean Chamberlain sexual wellbeing, exercise, • Beverley Milligan, QLD • Laurieton Haven Craft, NSW • Jean-Marie Vivian D’Avoine lymphoedema, managing • Blackmores Sydney Running • Linda Collins, VIC • Julie Ann Lyon-Theodotou the side effects of treatment, Festival participants & donors, • Lisa Sewards, VIC • Linda Nadort getting involved in the breast NSW • Lisa Turner, VIC • Marie Polla-Mounter cancer community and dealing • Calder Park Raceway, VIC • Lynn Brewster, VIC • Mavis Taylor with financial issues. • Patricia Kregor • Corrine Patch, QLD • Madeline Paske, TAS Other sessions included a • Roland Jecis • David Munroe – West • Margaret Browne, NSW Look Good Feel Better workshop, Wallsend High School, NSW • Margaret McKenzie, QLD • Sue Deans ‘pink’ pilates and a conference • Deb & Pearl’s Pink Party, VIC • Mary Crickett – A Voice for • Vera Kostovski dinner where participants • Dianne Kennedy, VIC Pink, Fundraising Dinner & Celebrations were able to get together, • Dixie-Lee Collits, SA Opera, VIC Thank you to those who have some fun and dance the • Ellen Hepworth – Think Pink • Michell Stewart, NSW celebrated a special occasion night away. Maida Vale Primary School, WA • National Council of Jewish and asked for donations to BCNA BCNA was very pleased to • Essendon Ladies’ Hockey Women of Australia in lieu of gifts; support this conference. Club, VIC • Nikki Henderson – Tickled • Aloysius Moses To read a report about it, visit • Estate of Paul Burgess, VIC Pink Breast Cancer Charity • Lyn Hunter our website www.bcna.org. • Floriade, Kerrie Griffin, ACT Ball, VIC • Melissa Strudwick au > News > Latest News > • G-Force Recruitment, VIC • Patricia Houston – Lawson • Michelle Marriott September > Report: 2nd • Gail Wing-Tang, VIC Mixed Bowling Day, NSW • Rob Daniel National Conference for Young • Patties Foods Ltd • Simone Miles Women affected by breast • Ross Cardinal, TAS • Vivien Kainer cancer.

Ovarian Cancer Australia has launched a new-look website at www.ovariancancer.net.au. For further information, phone 1300 660 334.

Shane Crawford stops to thank The Hills Breast Cancer Support Group on his journey from Adelaide to Melbourne. We thank all the communities and corporate supporters from around Australia.

14 Summer 2010 Breast Cancer Network Australia Reviews

Reading by Moonlight by I found it frustrating that Brenda Walker, Penguin 2010, initially some profound issues Breast Cancer: Taking Control RRP $29.95 were only lightly touched on – Breast Cancer: Taking Control guilt, shame, fear for children, The idea of a book that talked is a resource to assist patients crippling anxiety mixed with about how reading had helped and caregivers in making emotional paralysis. However, the author (a professor of English informed choices and find a greater detail of her experiences literature in Western Australia) path to recovery. to get through her breast cancer is covered later in the book. The The author, Professor John experiences from diagnosis to bulk of the narrative is taken up Boyages, MD, PhD, is an survivorship, was intriguing with descriptions of plot and oncologist and founding (particularly as during the same characters from the books that director of the Westmead Breast process I had lost all ability to Ms Walker felt reflected these Cancer Institute in Sydney. read for pleasure). experiences or helped her deal with them, interspersed with This book is the culmination While reading this book, reflections from her previous of research, peer and patient I reached the 12-month life experiences growing up, reviews. It also includes case mark after my post-bilateral working and travelling. studies and 20 key ‘control mastectomy, associated tone is very good. John’s ability The direct connection between points’ that are important chemotherapy and abrupt to explain different parts of the her experiences and the literary decisions you need to make transition from pre-menopausal journey is outstanding.’ on your path to survival. Each to complete oestrogen works is not always obvious section is colour coded for easy Until 31 December (while deprivation and was recovering and the works chosen are not reference: red (at diagnosis); stocks last), BCNA members from multiple other surgeries necessarily easily accessible to orange (before treatment starts); will pay $34.99 and receive free and investigations as a result of the reader as a result of their style and green (after surgery). postage and handling worth the diagnosis of a rare multiple and complexity. Some may find $13.20 and an additional $5.00 cancer gene. I discovered in stories such as Samuel Beckett’s BCNA member Sue Timbs said discount off the recommended reading this book what is no Malone Dies or the tales of Edgar ‘I found the book to be retail price. doubt obvious to many – how a Allan Poe hard going. excellent. It is easy to read, To order, go to www. book affects you is the result of Ms Walker’s writing style is well thought through in its breastcancertakingcontrol. your previous experiences, where engaging and a pleasure to read approach and structure and com/BCNA. you are currently at mentally and as each section unfolds it is very easy to understand. The and physically, and what hopes easy to relate to her emotional and expectations you carry. and physical journey: the relief Ms Walker has chosen somewhat truth of her experiences and the Depression surrounding to be alive but the feeling of dark authors who write about reality of survival. having been unjustly punished, re-staging and recalling my own ‘the fluctuations of emotional Bits of this are great and the ongoing shock of having experiences as I read this made it survival’ and whose characters other bits are hard going for a willingly submitted oneself both compelling but occasionally range from the horrific to the multitude of reasons, but if you to physical and chemical distressing – provoking pitiable, to help her explore are at all a reader this is worth mutilation, the abruptly memories of fear, hurt and the and make sense of the darker tackling. inevitable passing unkindnesses menopausal sleep-deprived emotional path of cancer Reviewed by experienced. body and the surprising words of survival. In this way she reminds Amanda Woodward comfort from the unexpected. herself and the reader of the

BCNA gratefully acknowledges our partnership with Bakers Delight.

‘Promonesque’ by Barbara Fahey www.bcna.org.au Summer 2010 15 The printing of The Beacon is kindly Dates for your diary supported by Vega Press

23 January 2011: One-day seminar, Meditation, Meaning and the Mind, presented by Petrea King, Quest for Life. Augustine Centre, 2 Minona St, Hawthorn, Melbourne. For further information or to register go to Seeking www.questforlife.com.au Stories 10-11 February 2011: 13th National Breast Care Nurses’ Conference, Melbourne Exhibition Centre. We are seeking stories for 28 April – 18 May 2011: Bakers Delight and BCNA Pink Bun Campaign. Visit your local bakery to show your support. the Winter 2011 issue of The Beacon on the topic of 10-12 November 2011: 16th Reach to Recovery International Breast Cancer Conference, Taipei, Taiwan. emotional wellbeing. For further information go to www.reachtorecoveryinternational.org Did you struggle with anxiety, depression or feelings of low self-esteem? Who or what helped you in your recovery? How have you come to terms Pink Lady with the ‘new you’? Perhaps breast cancer prompted you around to reassess your life, try new things or fulfil a lifelong dream. the world What advice do you have for women still adjusting to their Right: Daniel Deason with the diagnosis? Pink Lady at Mt Kilimanjaro. Please email articles of 200-300 words (about half a page) to [email protected] Below: Australian Youth Ambassador Bridey Kerwick by the end of March 2011. was inspired to hold a We ask you to also include a Mini-Field of Women in Kenya. high-resolution digital photo, She hopes the event will help or post your photo to us and we start the conversation about will scan and return it to you. breast cancer in Kenya.

the BEACON Layout: SUBStitution BCNA 293 Camberwell Road, Camberwell, 3124 1800 500 258 (freecall), (03) 9805 2500 [email protected] or www.bcna.org.au If you wish to unsubscribe to The Beacon or The Inside Story please contact BCNA.

16 Summer 2010 Breast Cancer Network Australia