In the Support Group, we all agree that reconstruction is a very personal choice and the decision to have or not have reconstruction should not be influenced by, or to please, partners, family or friends.
Reconstruction offers an opportunity to replace the prostheses for something more permanent, although it is important to know that this may not be achieved in one operation, the outcomes are often very much worth waiting for.
There may be a lot of information to digest about the different reconstruction choices you may have. Add to this the fact that you may still be coming to terms with diagnosis and treatment, reconstruction can be a difficult decision at a difficult time to have a full and frank discussion with your surgeon about what you hope to achieve and what are the best options for you.
Nonetheless, many of us found that having a reconstructed breast gave us more confidence and happiness.Likewise some women choose not to have reconstruction as they have no desire for further surgery and/or are accepting and content with their post-surgery bodies.
In October 2013, Ulster Health Authority in conjunction with the Belfast Health and Social Care Trust produced a short video of 14 different women’s experiences on why they chose to have, or not have, reconstruction. This can be viewed here via YouTube. It may be helpful to look at this, but ultimately we cannot stress enough that this is a very personal decision and should only be made by you and for you.
Anyone considering reconstruction will need to talk to an appropriate surgeon about options that will be available to you. The treatment is available on the NHS, together with nipple reconstruction and alignment surgery for the opposite breast.
Currently reconstruction surgery is not available at St Marys. However, a specialist plastic surgeon does visit the Island twice a month and he carries out all forms of reconstruction. This surgery is carried out at Odstock Hospital, near Salisbury, Wiltshire. Referrals are currently being made to Portsmouth Hospital but locally Southampton and Winchester hospitals are also available. The NHS does allow a patient to choose the surgeon and hospital, but you may need the consent of your GP, as well as receiving the agreement of your chosen surgeon if you decide to go off the Island.
Tattooing of the nipple and areola are done at Winchester. Travel fares are paid but options are being looked at to have a local service. For more detailed information contact your Breast Care Nurse at St Mary’s Hospital, Newport. (Tel: 01983- 534562)
If choosing to go privately, obviously you have more choice over surgeon and hospital. Please note, that some private medical insurance companies impose a time limit on reconstruction based on the date of your original mastectomy/breast surgery. There are no time limits imposed for NHS surgery.
With regard to waiting times, if your surgeon feels you are suitable for immediate reconstruction and you are happy with this, then reconstruction will be carried out at the same time as the cancer surgery. For a delayed reconstruction, a patient has to wait at least six months from the initial surgery to allow time to heal. Some surgeons also ask that a patient’s BMI is less than 30 before reconstructive surgery, therefore a patient may have to be given time to lose weight to achieve this.
The group felt that finding a surgeon who not only has a good skill set, but to whom you can talk easily, is important. Reconstruction can be a long process. Most of us had further work carried out after the initial surgery for adjustments (often called ‘tweaking’ by the surgeons), as well as further operations for nipple reconstruction and breast alignment on the opposite side. Whilst this does not necessarily mean great discomfort or long stays in hospital, it does prolong the process often by several months, or perhaps years, when you factor in waiting times. The general consensus was that the post-reconstruction work was often more of a mental hurdle rather than a physical one.
However, like reconstruction, post-surgery work is optional. Some of the group found they were happy with the initial reconstructed breast and could not face any more surgery to tidy up areas. Other women found that they were happy with a replacement breast and did not opt for a nipple or alignment. It is entirely up to you how far you wish to go with reconstruction. At the start of the process you may decide for limited or full surgery but then change your mind during the course of surgery.
There are books on reconstruction which you may find helpful, available from Applegate Breast Care Unit at St Mary’s. Please ask the Breast Care Nurses if you cannot find an available book.
If you wish to speak to someone who has had reconstruction, either ask your Breast Care Nurse or please contact the Support Group. Many of us are happy to discuss reconstruction and some may even be prepared to show you their results.