I was 38 when diagnosed with breast cancer, married with two young children. My daughter was 5 months old and my son was nearly 2 ½ years old. It was a HUGE shock but very quickly I knew I wanted everything to ‘look’ as normal as possible so I opted for a mastectomy with an immediate reconstruction (using the Latissimus Dorsi – LD flap or back muscle). After recovering from surgery, I went on to have 6 cycles of chemotherapy, 4 weeks of radiotherapy, a year of Herceptin, started Tamoxifen for 5 years, then lastly had Zolodex injections (these were to give me an early menopause due to my hormones still raging around my body so my Oncologist wanted to shut my ovaries down) I had these for 2 ½ years and finished them in February 2012.
I was lucky. I researched my surgery options very early on and even met a woman 3 days after my breast cancer diagnosis who was willing to show me her reconstruction. I also knew that I didn’t have to just have surgery at my local hospital. You can in fact, so the NHS Choices guidelines state, www.nhs.uk go to any NHS hospital in the UK for treatment or surgery. Of course, subject to a referral from your GP but that shouldn’t stop you from having the surgery you want or need. My local hospital couldn’t provide the surgery I wanted, so I had to look elsewhere. The surgeon who could offer the surgery was still within the same NHS Hospital Trust. Why didn’t I get all my options offered?
Many, many women don’t realize and don’t know they have a choice, which reduces their options OR may result in them deciding on wrong surgery for them. I have met women who didn’t get ANY option and have just ended up with a mastectomy. I have also met women who’ve had poor surgery. 13 years on the situation is changing for the better but people still need correct information. Reports like this New Breasts Not Offered After Most Cancer Ops back in 2011 stating the exact same figures on reconstruction – only one in ten women are offered reconstruction surgery. When I created my website 5 years later nothing had changed. Has it changed now? It’s hard to get information on surgeons and specialists who perform the various reconstructions.
My vision was that I wanted to provide links to all UK hospitals that carry out breast reconstruction surgery. This will also include the reconstruction surgeons. This will be a great source of information for women and men who have been given the distressing news that they have breast cancer and give them the options they need to make informed decisions. The links also include the Cancer Network that these hospitals work under as they provide the working guidelines for cancer patients. But seeing as these were changed and haven’t been finalized I don’t have the Network info yet. Still waiting…
Another area where I want to make a difference is when I specifically wanted to ‘view’ photos of other womens’ reconstruction surgeries, the leaflets say from Breast Cancer Care, even though fantastic and informative, I wanted to see what it would realistically look like. This was where there is a distinct lack of visual information. Yes, some of the Breast Care Nurses sometimes get a volunteer patient to meet at hospital to show off their successful reconstruction etc but it takes time and effort. This lack of ‘to hand’ information stops you from making decisions and making them quickly… massively important decisions – decisions that can affect you for the rest of your life. Decisions that can help you in your recovery after being diagnosed with cancer. Decisions for some, that can make you feel better about yourself after surgery. Decisions that can also have a negative effect and some patients have long term side effects. It’s not an easy decision.
Everyone is different, I know. My experience was that I didn’t want to wake up after having a mastectomy without a breast. Some people don’t want reconstruction. I felt I had to have an immediate reconstruction and my surgeon was able to do this for me. It’s not right for everyone, or there may be medical issues that they cannot have this immediately. Personally it helped me cope with my image and treatment. The way you cope is a state of mind but this will help you get through the biggest trauma of your life… Feeling good about yourself can massively help you in your recovery. It can stop you from being depressed, as you have enough to cope with going through surgery and treatments without having to deal with a mental illness in addition.
My vision is that I want photographs of reconstructions available to any patient so that they are able to make an informed choice – quickly. Women who have been through this procedure know how important something like this is. I have shown many women my reconstructed breast. If it helps someone to make the right decision for them then that can only be a good thing.
At my local hospital the Breast Care Nurse came to see me 2 weeks after the devastating news to show me pictures and for me to make a decision as to which surgery I wanted. She came with only 2 photos, both looking like the surgeon had not really cared with the surgery. I already knew that I didn’t want surgery at my local hospital but this confirmed it. The surgeon’s procedures were old-fashioned and outdated. What I want for patients is information on which types of surgery are performed at which hospital up and down the country. In fact, the photos should be a testament to how good the surgery is. Of course not all surgeries go to plan and there are risks with any surgery. My surgeon was fantastic. She had great knowledge and experience which is why I felt safe in her hands. I had a good experience.
So that’s where all this has began; a need for more information and photos available on line for patients to see. The analogy is this.
You are buying a new car… you wouldn’t buy a new car without a test drive, or looking at it or reading up on it or getting recommendations about it. This is SO much more important that a car. You need to know that it’s right for you. It would be fantastic if I can get at least one woman, who’s had breast cancer reconstruction surgery, from every hospital up and down the country, to post a photo of their breast reconstruction on my web site. You take a photo and email this with basic details of the Consultant/surgeon, which hospital etc so I can upload this onto a secure app on my site. The patient or user can then look in the privacy of their home on the secure login site. ABCD – Breast Reconstruction Advisor will give genuine pictures provided by patients. I am sure this will help many women making this tough decision at the most upsetting and crucial time of their life.
The more information you have the better. Knowledge really is power.