Jenny’s ‘comedy of errors’ experience as a breast cancer patient
Being a keen walker and having witnessed first-hand the advances in breast cancer diagnosis, treatment and aftercare, signing up for the Breast Walk Ever 10k was the ideal choice for me. I was raising money for breast cancer research whilst doing something I enjoy.
I met and married my husband whilst working as a Psychiatric nurse on a secure unit in Epsom. We were keen to start our family straight away but after numerous tests, we were told it would be very unlikely that I could conceive.
On my return home from hospital after a shocking miscarriage I received a letter from the medical oncology unit. I had been diagnosed with a hydatidiform mole. Back in 1977, this was an extremely rare type of cancer.
Soon after, I fell pregnant again and although this was high-risk for myself and my baby, I was monitored very closely by the hospital and I had a very healthy baby girl.
Eighteen months after giving birth to our first daughter, we welcomed our second daughter in 1982. Soon after, I noticed staining in my bra. I went to see my GP about the nipple discharge, and she scheduled a mammogram.
Looking back, it was very antiquated to say the least. Mammograms were never conclusive, and the detection rate was very low.
My contact at the hospital was with the general surgeon; back then there were no breast cancer nurses, oncologists or specialist surgeons.
After the lumpectomy, the drain they had fitted kept falling out and the nurses just kept reinserting it. I left with a temperature but soon after the pain and swelling at the drain site was unbearable, so I returned to the hospital for another operation. The abscess was drained successfully, and the consultant confirmed that the mass removed was benign.
Three years later, I mentioned to my neighbour that I had found a lump. Her mum had been treated for breast cancer and her aunt had sadly died from it, so she was very insistent that I went to the GP straightaway.
I was quickly referred to the hospital, to see the same surgeon as last time, who had previously told me I’d just be prone to lumps and bumps.
Whereas nowadays they do a biopsy straight away and if you agree to it, they’ll do a reconstruction in the same operation, I was woken up after the lumpectomy and sent home a few days later. I was due to have the long stitch removed on the Monday, but my appointment was rearranged to Sunday morning as I needed to change surgeons due to my current one being off sick after a speedboat accident.
We didn’t have anyone to look after our daughters, so we all went for the appointment. I was called in first, told it was malignant but not to cry. My husband was then called in and told separately. Walking out of the hospital was awful. When I was told that I couldn’t have kids, all I saw was prams, this time all I could see were women with large breasts!
The new surgeon told me there was indication that this would happen as the first surgery showed dysplasia around that area indicating the presence of cancer susceptible cells. He said he was sorry as I was only thirty-five, but I would have to have a mastectomy. I was concerned what my husband would think.
After the surgery there was no follow up and I was not offered any other treatment. Six months later I went in for my prosthesis. A reconstruction was mentioned, so we made an appointment with a plastic surgeon. At first, he was citing long waiting lists and was not friendly with the children at all. My husband told the surgeon that we were covered by private health insurance and suddenly, he was patting the girls on the head, giving them paper to draw on and we had the number of his secretary!
One week later, I arrived for surgery only to be told that they had forgotten to order the implant! It was truly becoming a comedy of errors. I returned the following week and had the reconstruction. My nipples had been removed and I was given stick-on ones which were made by Corningware, the same company that made kitchen pans and dishes.
The reconstructed breast was much smaller, and I looked lopsided. I went to another plastic surgeon who agreed to do the corrective surgery on the NHS as my husband’s new health insurance, would not pay out despite me being deformed by the previous surgery. He reduced the size of the other breast and created a nipple from the skin on my groin. This was brilliant, until pubic hair started to grow around my new nipple!
It was now November 2001, almost sixteen years had passed, and I had tragically lost my husband to cancer. I noticed a hardening on the side of my reconstructed breast. My GP thought the implant had ruptured so I was referred to a plastic surgeon and then to a breast care centre in Windsor to determine how much leakage had occurred. I took a morning off work and was planning to do some Christmas shopping after my appointment.
Five hours later, they had scanned both breasts and performed biopsies. I had met with a consultant, radiologist, breast cancer nurse and an oncologist. They had told me it was malignant and not only that, it was in both breasts.
It just didn’t seem possible to have recurrence after a mastectomy…
In fact, the consultant said it is very rare and he had only seen it in women who had elective mastectomies due to carrying a BRCA mutation.
I started chemotherapy immediately which I didn’t mind, but I disliked the cold cap. It felt much worse than brain freeze, and it was just too heavy and uncomfortable. Although the cold cap works to prevent hair loss, I still did experience this.
After three months of chemotherapy, the tumour was not shrinking and so they had to operate as quickly as possible. But something very drastic happened on the operating table and I woke up attached to oxygen, with two drains and a catheter.
After two weeks of recovery, I returned home only to wake up the next day with my bed and clothes saturated in yellow discharge. My GP visited me that morning and the district nurse dressed the wounds. Once again adding to the comedy of errors that is my journey, that same day I received a letter inviting me to have a mammogram! I rang the number given to cancel the appointment and I was asked if I wanted to rebook. I can just imagine the woman’s face when I said I had just had a double mastectomy!
When I went back to hospital to have the stiches removed, the breast surgeon took a swab and arranged a small operation for a few days’ time. Two of my daughters took me in and they were asked to wear gowns and masks, as were all the staff. I was isolated in a room on my own and it wasn’t until I heard the surgeon confirming with the ward sister that theatre knew I was MRSA positive that I realised why! As they wheeled me down, I facetiously cried out ‘Unclean, unclean’ whenever we passed anyone.
This operation was performed under local anaesthetic and I returned to isolation with an IV drip of antibiotics. I had no access to a radio or TV. I was completely cut off from the world.
I returned home with five different antibiotics to take, then I contracted E. coli, so I had another two antibiotics taking the total up to seven!
Then came radiotherapy. I was grateful for the hospital transport from Marlow to Mount Vernon in Middlesex. The driver would do detours for us, pick me up first and drop me off last. I was just so pleased to be out and about.
The last fraction delivered an extra boost only to the reconstructed side. I burnt badly and came out in blisters. By this time, I was on first name terms with the district nurses!
I asked about a reconstruction and whilst one plastic surgeon was happy for me to undergo this, my oncologist strongly advised against it saying that it was unlikely that I would survive the anaesthetic, especially knowing how badly I reacted to it last time. Although I understood his concerns, the breast nurse could see I was disappointed and gave me a larger prosthesis to give me the illusion of the tummy tuck I would have had with the TRAM flap reconstruction!
I currently take Letrozole, an aromatase inhibitor which reduces the amount of oestrogen in the body. When I first started taking it years ago, my GP hadn’t heard of it and my pharmacy had to order it upon request. Now it’s widely available. I take Calcichew-D3 Forte to tackle the reduction in bone density caused by the Letrozole.
Research has changed the patient experience significantly and I can see the improvements clearly, having had recurring breast cancer and seeing first-hand the differences in diagnosis, treatment and aftercare. I do believe that if the advancements were around when my first lump was found, I would not have had two recurrences.