Cancer and Aspergillosis - a double whammy
Aspergillosis is not a well-known disease, whereas cancer is extremely common. What happens when you have to manage the two together? I’m writing about my experience in the hope it will help other people.
The context
I have APBA and CPA. Both were stable when I got diagnosed with breast cancer in April 2021 aged 54. Diagnosis took a while as I noticed a subtle change to one of my breasts in August 2020 during a period between Covid lockdowns and shielding. I got two opinions from GPs and was somewhat reassured but alert. Fast forward to April 2021 and I’m sitting in a breast surgeon’s office reeling from the news I don’t ‘just have a baggy milk duct’ which is what I was told a few weeks before on first presentation at the clinic. My next thought was - how on earth was my aspergillosis going to affect treatment plans? I showed no sign so far of cancer in my lymph nodes and was cheerfully told that a mastectomy would likely see me clear.
Top Tips
1. Get your teams talking and get advice
This does rather assume you have teams and that they will talk. I was living in London when I got diagnosed with aspergillosis in 2015. I quite quickly looked for a second opinion and onward referral, as my very kind and willing local lung docs felt at a loss to help me further. I needed to stay with a London team as I had young children at the time and was also juggling work and the end stages of dementia care for my mother. This led me to the Royal Brompton Hospital, which became my specialist hospital. Intravenous drugs and emergencies were dealt with via my local hospital in east London but the communication between the team there and the Brompton was constant and both spoke highly of each other. When I learnt I needed breast cancer surgery, my first thought was to have my breast removed and not attempt any reconstruction. My very fragile skin is thought to result from the interactions between existing medications. I can cut my leg open on the corner of a cardboard box if I am not careful. I was sure my skin would be a nightmare in surgery and was immediately worried about it. The breast surgeon wanted me to seriously consider reconstruction at the same time as mastectomy. I immediately knew whose advice I needed and I emailed my Royal Brompton consultant Prof Robert Wilson about the surgery issues, and he emailed me right back saying can I call you now? To have this semi-retired esteemed doctor, who was for 10 years the medical director of the Brompton be available like this, made me cry with relief and gratitude. A lot more crying was to come.
The key questions were
What was his assessment of my current fitness?
What did he think about my fragile skin, and did he have a view on whether it could stand reconstruction?
Prof Wilson was sure I was fit enough as I was in a good place with a recent CT, but felt the issue was my skin. We did the surgery. Despite discussing it a lot, the breast consultant said he had never seen skin dry and shrivel like mine during implant reconstruction. I ended up with a necrotic patch which required further surgery.
2. Exercise if you can
When I knew I was having surgery I did my best to get fit. I followed every instruction for all the things, including specific exercises, that you are meant to do after a mastectomy. On the day I went back to clinic I was told I was in better shape and had recovered better than younger patients. And that they were relieved I had a viable breast now as my skin had been so weird that this was never a given. Which they had never mentioned. Breast care nurse, surgeon and myself all cried.
3. Chemo and aspergillosis
Since my teens, I have had three big things I am scared of – global pandemics, cancer, and severe lung disease. Consequently, 2015 onwards has been like aversion therapy. Chemo particularly scares me as an idea. I was very unlucky – sampled lymph nodes, which had looked fine on an MRI scan, turned out to contain cancer. Having this bad news when things look ok is something that happens to a minority of breast cancer patients – more usually a problem with the lymph nodes is apparent earlier on in the diagnostics. I had to have all of the nodes under one armpit removed in a second operation. The black necrotic skin was removed too. There were also signs that the cancer was pushing on the lymph node wall to get out into my body. More drains followed and a thing called a seroma where fluid built up and had to be drained by syringe. My tumour was also bigger than first thought and quite large for a breast cancer at 6cm. Doing my own reading using Macmillan Cancer as a trusted site, I saw I was a good candidate for the cancer having metastasised and spread. More scans followed to see if this was so. I was booked for oncology ahead of chemo. My next-door neighbour found me outside waiting for my husband so that he and I could set off for the hospital to meet the oncology team. I had already got through three tissues. I was allocated a new doctor at the Brompton – Dr Anand Shah who seemed highly regarded. The communication between him and my oncology team was constant. Again – relative to the situation – I got lucky. My oncology team was 2.5 miles away at Bart’s Hospital and a world leading team in breast cancer care. Dr Shah over at the Brompton reviewed me in a video call each month. He advised and worked with the oncologists to put me on preventative antibiotic treatment. I had said to Dr Shah on our first appointment that he was presumably used to dealing with the CPA / chemo situation and he said not really, as it’s not all that usual for people with CPA to be able to attempt chemo. I found this humbling and overwhelming and was very worried.
4. Some of the things we do for our aspergillosis are relevant for cancer treatment
Scans, IVs, PICC lines, At least I knew what to expect. To my amazement my cancer had not spread any further. I was alert to hazards as a result of my aspergillosis knowledge. My first chemo saw me hospitalised, but it was ok – I had fever due to low white blood cells, but not sepsis. I was put on a ward and spotted someone nebulising. I had a feeling this was not right in an open ward setting. I felt bad but gently asked the other patient about her treatment – she had pseudomonas which not long ago I spent a year getting rid of. I packed my bag and explained I was going to sit in the corridor till some clinically safe arrangements were made. I messaged two longstanding supportive friends in our patient group for advice – and I called the out-of-hours registrar at the Brompton who agreed the current arrangement didn’t sound safe and offered to talk to the ward staff at Barts. An hour later I was back in the bay and the other patient had their own room.
5. Cancer treatment may not be smooth when you have CPA, but there are resources via cancer routes that can help
My chemo had to proceed at a reduced dose and then stop early. I lost my two big toenails and got pseudomonas in the nailbeds but was able to access the wonderful resource of the local NHS Foot Clinic. My skin was what caused my eventual downfall and I was very sad and anxious. I developed burns on my hands and face not long into the 12 weekly sessions of the chemo drug which makes up the second part of the six months’ chemo treatment programme for the type of breast cancer I had. After a long wait, I got 12 psychology sessions by video appointment – the oncology psychologist was my lifeline. As was Dr Shah and his regular check ins. The things you can get for free when you have cancer were an eye opener. I had radiotherapy and my skin did ok. Which a lovely unexpected final bonus. I started hormone treatments as one good thing was that I had a type of breast cancer which responds to these. I predicted this second, induced, menopause would set off my aspergillosis again as my first, natural, menopause saw its onset. I appear to be right and have more challenges now. Dr Shah and team are on the case, and I feel well supported albeit scared. So far in my latest round of aspergillosis treatment, parts of me that worked before cancer treatment (veins for PICC and midlines for example) are now problematic. But a synchronised team seem to be finding ways round most things. I have a condition called lymphodema from having my nodes removed. Lymphodema is also a side effect of the steroids and intravenous antifungals that make up the main part of my latest aspergillosis treatment, so I now have a swollen hand, and only one arm will ever be usable for bloods, intravenous drugs, and things like taking my blood pressure.
Conclusion
I have always been a little wary of English pub cellar doors which open up in the pavement for beer deliveries, although I don’t think any passing pedestrian has ever dropped down one. In terms of my aspergillosis and cancer situation, I feel like I am standing on one of these pub cellar covers. One flap is marked ‘cancer’ and one is marked ‘aspergillosis’ and I’m waiting to see which drops first and pitches me down into a dark place. But for now there is research, there is a day unit, there is a treatment plan, and I have hope.
Fran Pearson - November 2022