I am a doctor and have had breast cancer. Mind you, this hardly makes me unique. There are over 53,000 women and 340 men diagnosed every year in the UK and we all have to negotiate the hospital system. As an insider did I find it easy? By no means, but by the end of my journey I had learned a great deal, importantly that excellent care is indisputably available, but knowing the best way to access it is crucial. I have much to share, but today I want to discuss getting the best operation.
Here's what happened to me:
Another week on, and I was in the out-patient department again.
So far I'd had a mammogram, an MRI scan and multiple biopsies. Now, surely they'd get on and remove my tumour, before it grew to the size of a football?
I had brought a small overnight bag with me --just in case. We waited the statutory two to three hours before being called in.
My consultant seemed to take ages before she spoke, 'Quite good news.' She paused. Straining forward, I willed her to continue. And? Get on with it woman, you're not announcing the results for 'Strictly Come Dancing'.
'Two and a half centimetres of your tumour is grade two carcinoma. The rest is pre-cancerous.' she continued.
'So what's the plan?' I asked.
'I can just remove the tumour, or I can do a mastectomy with a breast reconstruction. Which would you prefer?'
I was confused. I didn't really know enough about the options. Maybe she didn't realize she hadn't explained them to me. She continued to stare. I tested the water, 'I suppose just removing the tumour would be best?'
'There'd be a lot of scar tissue, and the breast will be smaller than the other side. You'll need radiotherapy, which could make the breast shrink more.'
It all sounded negative. Maybe she was steering me towards mastectomy. 'Oh, OK. So maybe a mastectomy with a reconstruction?' I asked.
She took a breath. 'Well if that's what you want, there are different types of reconstruction. You could have an artificial implant, or a latissimus dorsi flap, using tissue from your shoulder. Alternatively, fat can be taken from your tummy to form a new breast. That's called a DIEP flap.' She stared again. She didn't exactly glance at her watch, but I was conscious that her clinic should have finished hours ago.
I tried to focus. I'd heard that implants gave poor cosmetic results at my age. Removing part of my shoulder muscle didn't appeal either, however, the DIEP-flap--an NHS boob job AND a tummy tuck, sounded perfect. I could certainly spare some belly fat, and this should leave me with least disfigurement. 'I'd like a mastectomy and DIEP-flap reconstruction.' I was confident I'd made a good choice.
'I can't offer that operation--you'd need to go to a plastic surgeon,' she replied. She didn't explain how this could be achieved, and, fearing a long delay, starting again with a new surgeon, I dismissed the only option that had seemed appealing. So what should I do? She'd painted a negative picture of the local excision, but had only offered unappealing reconstruction options for the mastectomy.
I felt weary. I tried to ask more questions, but her explanations were confusing. It seemed like I'd be left with a chest that even Gok Wan couldn't salvage. She was waiting for a decision. I couldn't hold her up any longer. So I made one of the most important decisions of my life on little more than the toss of a coin.
- Excerpt from award winning 'From Both Ends of the Stethoscope - getting through breast cancer by a doctor who knows' by Dr Kathleen Thompson
With most illnesses there is only one suitable operation. Breast cancer has the blessing, and the curse, of choices. Sometimes a particular operation is not appropriate for your particular cancer type or stage, however NICE guidelines state that all appropriate breast reconstruction options should be offered and discussed with patients. If your choice isn't available locally you should be referred to an appropriate surgeon.
So what can you do to ensure you have the best options? Some tips:
1.Take a friend: A cancer diagnosis puts us into shock. You will not absorb all the information provided. I remembered only 50% of the information my friend had written down for me during my consultations. Two pairs of ears are better than one, and it is easier to challenge decisions when you're not on your own.
2. Knowledge: Learn about your illness. You will have confidence if you understand your treatment options, and you will be aware if a suitable treatment hasn't been offered. Check out your choices of specialist, make sure you get the best one available - why not?
The Internet provides copious information, but no 'Truth Filter'--so choose your sources carefully. Good websites include:
a. Breast Cancer charities, American Cancer Society, Cancer Research UK
b. Regulatory bodies: FDA (USA), EMA (Europe), plus NICE.
c. Pubmed for original research papers.
3. Understanding: Take a tube of superglue and glue your bottom to your seat. Don't leave until you have understood what your doctor has told you. Don't be embarrassed to ask again and again. Your doctor may quote statistics--they can be confusing, make sure you understand. I have written an article to help you.
4. Self-worth: During my treatment, I noticed my more assertive fellow patients got far more out of the system than I did. So:
a) If you need something, speak out
b) Remember that your needs are as important as everyone else
c) Speak a little slower and louder than normal
d) Be polite but firm
Wishing you the best health, and a successful journey through any treatment you should need.
Note: This article expresses my personal views. No warranty is made as to the accuracy or completeness of information given and you should always consult a doctor if you need medical advice