Three words come to mind. Coronavirus, Cancer, and well, it sounds better in French “c’est con!”. A cancer diagnosis really brings the world into sharp focus. When my left nipple started discharging blood I thought it was just a side effect of the HRT I had started taking for my night sweats. Just in case, I called the GP who referred me on a 2 week wait to breast clinic. 27th February 2020. I wasn’t expecting that.
Nothing to worry about. I looked up causes of nipple bleeding and self-diagnosed papilloma caused by HRT. The doctor at breast clinic said they wanted to rule out cancer. Well, of course they did, but I was sure it was nothing serious. The look on the breastcare nurse’s face after my mammogram said otherwise. Ok, recalibrate. Everybody was so kind, that spoke volumes. I sat and sat and sat, waiting for the next investigation. My optimistic appraisal that I’d be back to run my own clinic by the afternoon rapidly dwindled until I rang my secretary to apologise profusely that I was going to have to let my patients down.
A couple of needle aspirations and three radiologically guided core biopsies later I was the longest attender of the day. Everyone was so kind, it was most disconcerting. My breast looked like a pincushion. I had some rather spectacular bruises the next day.
I was to come back for the results one week later. We had to curtail our week’s holiday in the Cairngorms to keep the appointment, but we thought it best to find out as soon as we could. I have no idea how we managed, but we got up some munros and tried our best to relax. I wasn’t relaxed at all really but it’s amazing how you can compartmentalise things when you have to. The day before we were due to travel home I received a phone call from the breast clinic saying that my results appointment was postponed indefinitely due to a backlog in the pathology department. My husband was livid. We needn’t have cut short our holiday and we were going to be stewing all weekend. I find it much easier to cope when I have something to work towards. Having the results appointment postponed indefinitely sent me into a tailspin. I joined some online cancer forums, which helped a little, at least to see that others were also waiting ages for results.
The dangers of self-diagnosis
Having been shown my mammogram and seen the segmental pleomorphic calcifications which it showed, I did some googling of radiology journals, and convinced myself that I had invasive ductal carcinoma (the most common type of breast cancer). I started to think about rewriting my will and hoped that I would still be within the NHS death in service contract so that my husband would be ok financially! This sounds ridiculous but I also found myself thinking that maybe the reason that God didn’t allow me to have children was that I would have left them motherless.
I eventually got a phone call to say that the biopsies showed atypical ductal hyperplasia and flat epithelial atypia. Eh? In plain English that’s not cancer but because the abnormal area was so large, there was a good chance that there was something nastier hiding in there somewhere. They didn’t actually say that to me but I deduced that there must be some reason for them to want to do further investigation. They reassured me that there was nothing suggestive of invasive disease, and I felt rather foolish for having planned my funeral.
The next step was a vacuum assisted biopsy. By this point it was Friday 20th March. I’d had a terrible day at work the day before and had the mother of all headaches and a sore throat, but no fever or cough. This was just before the lockdown and the advice was to self isolate only if you had fever and cough.
The radiologist who oversaw the biopsy was the first person to level with me on what he thought the diagnosis was likely to be. About 20% of core biopsies miss a cancer, and he thought it highly likely that I had something called DCIS. Ductal carcinoma in situ is cancerous cells which have not broken out of the ducts. They range from low to high grade, and in some cases never do anything other than sit there. However, you can’t just leave them in case they do transform into invasive disease, which will generally happen eventually, but who knows when?
Being (a) patient when you’re a doctor
I was offered a telephone appointment for the results 10 days later. I was sorely tempted, and came very close, to looking up my own pathology results but I resisted as I realised I could be struck off for doing so. When the time of the appointment came and went with no phone call I became more and more agitated. More than anything, is it not sheer courtesy to inform your patient that their appointment has been rearranged? The following day I received a call to invite me to a face to face appointment with the surgeon 3 days later. Oh-oh. That sounds ominous.
Throughout all this time I was trying to juggle my busy clinical job with breast clinic appointments and the psychological impact which the uncertainty was having on me. I kept having to apologise to colleagues that I wasn’t firing on all four cylinders. Not to mention the impact of all this on my husband, who felt powerless to help. To top it off, the day after my vacuum biopsy I felt distinctly under the weather, with swollen glands, sore throat and a bit of a cough, but still no fever. My husband was flabbergasted that I couldn’t get a Covid-19 test as I “didn’t fulfil the criteria”. Still, I worked from home for a week just in case. Good thing I did as I later tested positive for Covid-19 antibodies. It does make me wonder whether I inadvertently passed it on to any of the staff at breast clinic.
You need a mastectomy
We both went to see the surgeon on 3rd April. He told me I needed a mastectomy. It came as a total shock as I was expecting to hear that I might need a lumpectomy at worst. My husband blurted out “This is the 21st Century! Isn’t there any medication or anything which she could take? Is butchery really necessary?!!” Apparently “butchery” is the only treatment which works for DCIS, but it is curative as long as they take all the abnormal breast tissue (clear margins). I have small breasts so the abnormal area was occupying more than half of my breast tissue. So, no clear margins without taking the whole breast.
What came next felt totally surreal. I could’t really take it in. This is the best kind of breast cancer to have, said the surgeon. It won’t kill you any time soon. Some of these types of cancer never turn nasty. Trouble is you’re young and it’s extensive, taking up most of your left breast. That means it’s too risky to sit on it. It needs to come out. But all “elective” surgery (yes, cancer surgery is deemed elective) has been cancelled for the foreseeable future. We’ll review you in 3 months time. Any questions? (My mind went blank). I think we vaguely mentioned implants and I asked whether I’d be likely to get surgery before Christmas. Who knows, but we’d hope it’d be sooner than that… Bye!
From that point on life became a whole lot harder. I had never before appreciated what it must be like for my patients to be waiting indefinitely for a diagnosis or for treatment. It is one of the biggest headf**ks there is. I was beside myself with anxiety, not that I feared my life was in danger or anything, but over how I was going to cope with the months stretching out ahead of me with this hanging over me and no plan or even guidance. I greedily sucked up all the information about breast reconstructions which I could find, sought solace in coffee with colleagues at work (socially distanced of course), and desperately reached and reached for some sort of balm to my fevered mind.
I have always been good at seeking help and did so this time with gusto. A contact from my local Christian Medical Fellowship group put me in touch with an oncologist who was wonderful and took time to talk to my husband as well. We were less than convinced by the pathology report, which stated that there were 2 abnormal areas, one which might be DCIS and another which was more likely to be DCIS. Well, is it or isn’t it? I was reluctant in a way to seek a second opinion as I cope much better if I have a plan to work with and I liked the decisiveness of the surgeon’s plan – I needed a mastectomy and that was that. My husband was far from convinced that it was a good plan however, and was very keen for a second opinion. The oncologist had colleagues who he could recommend, so I asked my GP to refer me for a second opinion.
The referral was delayed due to getting lost in the post, but when it eventually arrived (after my chasing it up several times…) things began to move a little faster. The MDT looked at my biopsy slides and were not convinced that they showed DCIS. So I went for another biopsy of the most densely calcified area (why didn’t they biopsy that bit first?) which did show definite DCIS. The 1.5h drive to and from clinic was worth it. Surgery was still postponed indefinitely (mid May by now) but to help characterise the lesion prior to surgery I had an MRI scan which showed “possible invasive foci”.
This galvanised the surgeon into action. He thought that implant reconstruction would resume soon and called me to say that he’d like to operate at the end of June. What a sense of relief! I felt so much lighter. The presence of a plan made such a difference to my wellbeing. I went into planning mode and informed work that I would be having to self isolate from 15th June for surgery 2 weeks later.
During all of this time I had still been at work. A totally different work from the usual and much more stressful. 7 day working had come in and we were doing all of our consultations by phone or video. Many of my colleagues were working from home during the lockdown but I found that actually going to work did me the world of good. Just to have people around helped so much. My colleagues were brilliant. The trouble was that as time went on I struggled more and more to make clinical decisions (all my patients are complex and there is a lot of emotional distress. This is multiplied when you can’t see them face to face and have to make difficult decisions based on a telephone assessment) and I knew that sooner of later I’d have to stop doing clinical work. I was worried I might harm someone inadvertently through indecision and I lacked my usual clarity of thought.
The call from the surgeon was what I needed to legitimise my sickness absence. Isn’t it daft that I felt I needed to legitimise it? People had been telling me that they were astounded that I was still managing to work at all. So I gave notice of my sick leave and that I would be working from home but not doing any clinical work from 15th June. I was expecting to be called to pre-op clinic the following week and when I heard nothing I rang the breastcare nurses for an update. The reply was distinctly not what I wanted to hear – we have not yet been given the go ahead for reconstructions. We will call you next week if we have any news. Whaaaaat! The feeling of having a plan evaporated, poof! I didn’t know where to put myself. I had to go for a power walk to let off steam. What was I going to do now I’d told work that I would be self isolating from 15th June? Was I a fraud? But I knew that I was no longer safe to be doing clinical work beyond that date and that I needed to stop. How long would work put up with my being off sick without even having a surgery date?
Ten days went by, still no news. It was my last day at work. I felt about the worst I have ever felt. Guilty at not being able to “soldier on”, desperate to find some clarity and a plan, despairing over what I was going to tell my husband about my inability to carry on working. I had become deeply familiar with the Association of Breast Surgeons’ recommendations for resumption of surgery after the Covid-19 lockdown and was wondering why on earth some parts of the country had restarted reconstructive surgery while others hadn’t. I even wrote a question for the government briefing. Needless to say, it wasn’t chosen!
A difficult weekend followed, lightened on Sunday by what turned out to be our last mountain walk before my surgery. Seven hours over the Coniston range, it was wonderful to be in nature. Part of my survival strategy has been running, walking and wild swimming. I will miss that whilst my scar heals. My other coping mechanisms have been painting watercolour, doing meditations with a wonderful friend in Sydney, Australia (hooray for internet video platforms!) and counselling from Cancer Care.
Monday came and the sense of relief which I felt from not having to think about clinical work was palpable. It also make a huge difference to the tension which my husband and I were both feeling at home the previous week. I knew without a doubt that I had made the right decision. I was doing my best to hold the uncertainty as lightly as I could. Finally I was rewarded (it might also have had something to do with the fact that a whole load of people were praying for me…) with a voicemail on Tuesday evening to tell me to start self isolating tonight (nothing like a bit of notice – dash to ASDA in a hurry!) for surgery on 1st July.
Now that I have a date I cannot describe the difference in how I feel. I have a plan. My husband posted on FaceBook as a lot of our friends didn’t know what had been happening for us since lockdown and the responses and good wishes have been overwhelming. Who knows how I will feel when I have lost my breast (I hope I won’t be one of the ones whose body rejects the implant). What I can say now is that all the waiting has at least helped me come to terms with what is going to happen – who would ever have thought I’d look forward to having a mastectomy?!