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Building a new future

Movement can be seriously affected by breast reconstruction after cancer treatment.

But is enough being done to research the problems and to advise patients, asks Sally Priestley  Three years after her diagnosis of breast cancer and almost two years after a breast reconstruction procedure following treatment, Jane Millar cannot put her bag in the overhead locker of a plane; her back muscles lock into place, she can’t go up or down  she’s stuck. It’s embarrassing, but also inconvenient for someone who travels extensively for work. She is fascinated to know why her breast reconstruction has left her so weakened. But frustratingly, it seems no one can tell her. This is all the more surprising given breast cancer’s high profile in the medical world. Breast cancer is now the most common form of cancer in the UK. Usually affecting women, around 47,000 people are diagnosed every year. Many will undergo surgery to remove the cancerous cells from the breast area and there will usually be the option for breast reconstruction afterwards.

Looking ahead

Breast reconstruction surgery is a rapidly evolving area, and each operation is adapted to the individual so outcomes will differ. However, Jane Millar is concerned that there appears to be little information available on what women can expect two or three years after their operation, and even less physio support to help women through this time. An ex-physiotherapist, Jane was particularly well placed to choose the right reconstruction procedure for her. After her mastectomy, Jane talked through her reconstruction options with her surgeon and breast care team. She also did her own investigations, including visiting several women who had undergone reconstruction to talk about their procedures and experiences. She eventually chose an ‘LD flap’; a popular form of reconstruction that involves skin, fat and muscle being taken from the latissimus dorsi area on the back and threaded through to the front of the body to make a new breast. A successful reconstruction gave her a well matching breast and a good result, and Jane was especially thorough in her rehabilitation and physiotherapy efforts. She is now out of the breast cancer ‘system’, and yet is still suffering problems with her core strength. As well as the problems with high lifting, pulling and pushing doors is uncomfortable and her balance is ‘all over the place’. Chiara De Biase is a former physiotherapist and now manager of the Macmillan Centre at King’s College Hospital. She thinks breast reconstruction is a rich and untapped area of research. ‘There is an illusion that everything is going to be perfect and life will be as normal after reconstruction,’ she says. ‘But the latissimus dorsi is a huge stabilising muscle and has a big impact on everyday function.’

Lack of direction

Despite this type of reconstruction surgery happening all over the country, current after-care is ‘patchy, if not non-existent’. There is a lack of specialist training for physios in this area, Chiara says, and ‘it’s normal for band-five physios to be expected to deal with oncology cases after very little experience working with cancer patients.’ Sue Kortum is another physiotherapist who has gone through breast cancer and had breast reconstruction. She too feels that there is a lack of training and education for physios in this area. ‘There is a wide open field on the issues surrounding rehabilitation after breast surgery and physios with research interests should be encouraged to take this on,’ Sue says. She also feels that general support for patients being treated for breast cancer could be lacking. ‘The decision to go ahead with reconstruction is often rushed and patients may wish they had waited before deciding to do so.’ She says the psychological issues around breast surgery are possibly underestimated, ‘but physios are potentially in a good position to help here, given they spend so much time with patients and are well placed to explain the body’s processes for recovery’. Sarah Nevell agrees that there should be more access to counselling around the decision to go ahead with reconstruction. She says: ‘Because everybody is entitled to breast reconstruction, it’s viewed as the positive thing to do. It’s advocated by surgeons, and the world of breast cancer in general, actually.’ She too has had surgery to treat breast cancer, but has chosen not to have reconstruction. ‘Some people have it done at the same time as a mastectomy and don’t even see if they could have coped without their breast. But after a breast is removed some women may feel they don’t need a reconstruction after all, they might find they are actually very happy with a contact prosthesis for example, which are now very good.’

Ready for change

Catriona Futter is an expert in physiotherapy after breast reconstructions. She works in a regional plastic surgery centre at Glasgow Royal Infirmary that sees around 25 reconstruction procedures a month  a particularly high figure. ‘The key message I give people after an LD flap reconstruction is that you will never have quite the same strength in your arm as you did beforehand for certain activities,’ she says. ‘Surgeons might not spell it out as clearly as that, but I can give more detailed information.’ Catriona has only been able to specialise in this way because of the amount of patients that come through the doors of her unit. But while she and fellow colleagues have looked at patients around one year after LD flap procedures, she says there are few studies that have looked at patients any further down the line. ‘There are also many variables with breast cancer and treatment, which make studies hard to compare,’ she says. And in her specialist centre there are no routine follow ups. ‘We see patients on the ward, and progressive exercises and literature are given. A small number require hands-on treatment as out patients. ‘If patients are referred to their local hospital there is usually a physio there that I can advise on surgical details and rehab; but it’s just not realistic to have a reconstruction specialist in every hospital,’ says Catriona.

Across the board

Delva Shamley is a senior research fellow in the clinical trials unit at Bournemouth University; she is also a physiotherapist. As someone who has conducted research in this area, she feels very strongly about what needs to happen now. ‘This lack of physio support doesn’t just apply to people with reconstruction, it’s across the board for people with breast cancer. Rehabilitation is, in the majority of trusts across the UK, extremely poor to non-existent. ‘There are simply not enough rehabilitation professionals to care for patients after the medical care for breast cancer,’ Delva says. ‘We already know there are problems with long-term morbidity, there are enough papers published to prove this. It’s true that we don’t know what’s causing the morbidity in the upper limb, and there isn’t enough follow-up research, but we know there is a problem here. Our own research has shown morbidity for up to six years post treatment.’ Delva is clear about what needs to happen now. ‘We need to increase our knowledge on what patients need after reconstruction, assess the risk factors for upper limb morbidity and work out which risk factors respond to intervention. That way we can identify patient groups and target our resources in the most cost efficient way.’ She says there are too many patients and not enough funding for physiotherapists in the NHS system to get specialists into every unit. ‘But we need to allow patients access to some form of after-care. We need to manage their rehabilitation and their expectations, and we need to get on with this now.’ fl

Helpline

If you have any questions about breast cancer, you can call the Macmillan Cancer Support free helpline on 0808 808 0000, or visit the website at http://www.macmillan.org.uk   Breast Cancer Care also offer a free support line at 0808 800 6000, or visit www.breastcancercare.org.uk If you have any concerns about your employment rights and breast cancer diagnosis and treatment, talk to your CSP steward or contact the CSP directly on 0207 306 6666

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