Dr Ruth Edwards
I am passionate about raising breast awareness and developing an understanding of the issues faced by those with breast cancer, indeed all cancers, to enhance our empathy as healthcare professionals.
I saw my GP in July 2014 as something just wasn’t quite right; I didn’t have a lump. My GP was great – she wasn’t concerned but decided to refer me ‘just for some reassurance’. Several months later after mammograms, fine needle biopsies, core biopsies, ultrasound, multiple examinations, a lumpectomy, all the time being told I had a benign papilloma, I was given the news that I had Ductal Carcinoma in Situ (DCIS). It was like a bolt from the blue as all along my tumour had been ‘benign’. That day I was allocated a Breast Cancer Care (BCC) sponsored Breast Nurse who gave me a BCC folder to take away. My lovely nurse (who was a great support throughout) told me I didn’t need to ‘read the entire folder tonight’, to which my husband snorted ‘you don’t know Ruth, she’ll have it read before we reach the car park’. I remember walking out to the car park shocked and numb with this folder under my arm; ‘was this real, did I really have breast cancer?’ – I must have as I was carrying a BCC folder and had my own breast nurse!
The information provided by BCC and others such as Macmillan was so helpful in understanding what was going on, really useful in telling my family what was happening and invaluable later when considering reconstruction. I chose not to read discussion forums on other’s experiences as it was already overwhelming dealing with my own emotions. This is a piece of advice I regularly now give patients; stick to reliable sources of information and try not to get sucked into other people’s experiences, particularly at the early, confusing stage of the journey.
At that point the news was as positive as it could be – DCIS is not invasive and is always classified as Stage 0, no matter the spread. I was advised that they needed to do further surgery to excise the margins but I needed an MRI scan first to determine the extent. A month later, three days after my MRI scan, my consultant phoned to tell me the DCIS was extensive and I would need a mastectomy; shock, disbelief, anger and fear.
I still needed more core biopsies (the most horrible experience, Google it!). I had almost fainted at the last one so was dreading this. At this one, however, the Radiologist kept up a commentary for his junior colleague and it really struck me how important it is to keep a patient constantly involved in what is going on, in any context – so much less frightening!
The outcome of the core biopsy was that there was now a ‘suspicion of invasive’. I really wish I’d asked them not to be so vague and uncertain. I left the clinic reeling, knowing in my head that this really changed the outcomes for me – no longer just surgery but now possibly chemotherapy and/or hormone therapy. I knew that ‘suspicion of’ was medical speak for ‘it’s a fact but we’re trying to break it to you gently’ but my husband interpreted as ‘it’s only a possibility so might still be ok’ and that was tough to cope with. I wish I’d had the presence of mind to ask about all of that at the time but I was too shocked at ‘yet another piece of bad news’ to think and ask. Again this led me to reflect on giving patients information; giving them time to react emotionally but being quite explicit that there may be worries and concerns that arise after they have processed and to create the opportunity to deal with those at a later date. I felt stupid and weak worrying about the possibilities when actually I should have been being kind to myself (as learned to do better later); in reality, these possibilities should have been frightening, despite, or perhaps because of, my understanding from a professional perspective. I also reflected later that knowing something professionally is so different to experiencing it as a patient; knowledge will never prepare you for the emotional impact of the experience. We need to be careful not to assume that those who know a lot about their condition will feel fine about it; very often the two are completely disconnected and often the more you know, the worse you feel!
My next difficult decision was what type of reconstruction to have. My consultant didn’t expect me to need radiotherapy (which can damage a reconstruction) so was eligible for immediate reconstruction; I would go to sleep with two breasts and wake up the same. I was taken aback by how important this had become to me. A had several (daily) appointments with both the breast surgeon and plastic surgeon at this stage (while trying to continue to work!) and they were really supportive in helping me decide. In the end, I opted for a DIEP free-flap reconstruction (using the abdominal tissue to replace the breast tissue); a much longer and more complex procedure but a much better outcome, they assured me. I realised afterwards that throughout this decision-making process, I had been worried about vanity influencing my decision; a shorter implant operation would obviously not carry the same risks as an 8-hour free flap reconstruction and would have shorter hospital stay and recovery time. When my thought process became more logical, I realised vanity had nothing to do with it. My breast was a significant part of who I was physically, mentally and emotionally; part of my identity as a woman. I had completely underestimated the psychological impact of losing it and was taken aback that I was not able to be more logical and detached (again not being kind to myself!!)
I had the surgery on 8 February 2015 and woke up after 12-hour surgery (longer than planned) weak and hypotensive (which I subsequently identified as a side-effect of oxycodone via the BNF on my phone, much to the nurse’s amusement!) but with a perfect reconstruction. I had a large abdominal scar from the ‘tummy tuck’ (with a very flat tummy!) but my breast only had a small round scar where the nipple had been. My wonderful surgeons managed to remove tissue and sentinel lymph nodes as well as perform reconstruction through this small hole and it looked exactly like my other breast!
Fast forward 4 days and the reconstruction failed! I needed emergency surgery in the middle of the night to repair the vasculature (and now have a fab Harry Potter scar on my foot where they took a donor vein from!) My surgeon was really upset; despite numerous similar procedures, this had never happened to him at day 4 – I told him that I just like to be unique! What followed were several worrying days for me and the medical team including dealing with severe anaemia (but being unable to receive a transfusion because of risk of clotting in the reconstruction) and fever which was treated with iv paracetamol and antibiotics. I remember watching all this as if it was happening to someone else – the nurses were so compassionate and caring but I couldn’t believe this was happening to me. Twelve days after the original surgery I had the reconstruction removed and left hospital with only one breast and a load of scars. I was in shock – having woken up with a perfect reconstruction I had now lost that along with my breast.
I was a regular (almost daily some weeks) visitor to outpatient clinics for about 8-10 weeks for dressing changes, tissue expansion (to prepare for a later implant) and radio-isotope scan (to ensure the tumour hadn’t already metastasised). I received the pathology results which were good news (small invasive and grade 2) but at the same time was told of an incidental finding of an ovarian cyst from my pre-surgery CT scan (which thankfully ended up being unsuspicious). I saw the oncologist who discussed my ongoing statistical risk of recurrence and mortality (low) and that whilst chemotherapy would reduce this risk further, the risks of treatment outweighed any small statistical reduction in risk. I felt like this was the first piece of good news I’d been given in 9 months but still worried that this was the right decision. As my tumour was hormone receptor positive, tamoxifen would significantly reduce my mortality risk and so I started treatment.
During this time period, I received support from my breast nurse, the onco-psychiatric services and I started to visit the local Maggie’s centre. I was shocked how difficult the mental and emotional recovery was – my physical recovery from surgery was hard but the loss of confidence, fear and anger took much longer to recover from (and still affects me). NHS cancer care services were amazing but have limited resources to deal with the mental and emotional support, especially once treatment is finished.
For me, Maggie’s was a godsend! It was a safe and comfortable place where people understood what I was going through without forcing support on me. Through Maggie’s, I recovered some of my confidence and started to feel hope. Through one of their courses, I also met a wonderful group of ladies who had had a similar experience and we have become firm friends and a fantastic support for each other. If you have a Maggie’s Centre in your area, please encourage anyone impacted by cancer (including families and friends) to visit.
Two and a half years (and a silicone implant reconstruction) later, I am still coming to terms with many of the issues I have faced and I’m still not finished reconstruction. I have had to accept that cancer and its associated treatment has changed me as a person which is difficult to accept when I prefer the person I was before. This is apparently very common; traumatic experiences including cancer do change people. I battle daily with slower thought processes and decision making, lack of confidence in my body (which is also covered in scars) along with the side-effects of tamoxifen (weight gain, fatigue and tiredness) all of which affect my self-esteem and confidence. But I am alive and am trying to celebrate the scars as the sign that my cancer has gone; like anything, easier said than done! Throughout my treatment I’ve had good and bad medical experiences, none of which depended on the medical care received but instead on the communication skills of the professionals involved. Where I felt involved and treated as a person rather than a body with a cancerous breast, the difference was amazing, something which has absolutely impacted on my professional practice.
As well as professional support, I have had amazing support from my husband, family, friends and work colleagues, some of whom have figuratively and literally held my hand and walked beside me through the tough times. They made me laugh, helped me try to think positive and have hope when I felt like there was only bad news. For that, I am immensely grateful.
My husband and friends decided to say thank you for the care I received from Maggie’s by writing and recording two songs to raise money and awareness for the work the centres do. The story of these songs and the links to download are available HERE.
From a professional perspective I want to finish with several pleas for pharmacists and other healthcare professionals:
- Practice and encourage breast awareness (Breast Cancer Care have some really useful resources that can be ordered free from HERE.
- Consider opportunistic intervention, for example when dispensing oral contraceptives, you may wish to offer. Taking care of you breasts’ mini-guide.
- See the whole person, not the disease; involve them in decisions about their care.
- Have compassion when you are dispensing tamoxifen for patients (they will almost certainly have had quite a difficult journey to this point.) Offer support if you feel appropriate and able to but do not push people to speak about their experiences (I have lost touch with some of my Maggie’s friends because they don’t want to be reminded of their experience … and that’s ok!)
- Direct anyone for emotional support to organisations like Maggie’s and Breast Cancer Care (many people try to stay strong and say they don’t want help but the emotions eventually catch up).
- Signpost to reliable sources of advice such as MacMillan, Breast Cancer Care or Cancer Research UK.
- Consider fund-raising for one of the wonderful charities involved in supporting those affected by cancer.
Writing this article has helped contribute to the healing process. Pharmacy in Practice asked me to write about 18 months ago after I spoke at a pharmacy event but I wasn’t ready to do so at the time. If my experiences can help others in terms of raising awareness, improving care for those experiencing cancer or raising funds for charities who provide emotional support then it will have been worth it.