I had my post-op check-up with my breast consultant surgeon at the Conquest Hospital in Hastings on 8th August 2022. She was very pleased with my reconstructed breast. She then went on to talk to me about the post-op histology. This is the summary:
“Wide local incision showed 37 mm DCIS intermediate and high-grade with 4 mm invasive component, grade 2, no vascular invasion. DCIS was ER* positive 8/8 PR* 6/8 on the pre-op screening biopsy. Invasive component ER positive 7/8 and *HER-2 positive.
Left mastectomy pathology showed a further 30 mm residual intermediate to high-grade thus giving a total size of 67 mm of Ductal Carcinoma in Situ. A further 1.5 mm invasive component found in the mastectomy specimen either grade 1 or grade 2 ER AND HER-2 status on this tumour not reported.”
*ER – Oestrogen Receptor
*PR – Progesterone Receptor
*HER-2 Positive (human epidermal growth factor receptor 2): The extra HER2 protein encourages the cancer cells to divide and grow. Between 15 and 20% of women with breast cancer have HER2-positive cancers.
This was the evidence that a mastectomy had been the right decision. Not only that, had my consultant in Hastings not been vigilant and taken the precaution of an extra margin in my first lumpectomy, I might not be cancer free now and the outcome would undoubtedly have been considerably worse. The advice from the Park Centre in Brighton who carried out the initial biopsy, following many discussions between them and the Conquest Hospital, was that they were not concerned about the second area of cells. Although only a similar amount again was removed during the mastectomy, if left the HER2 cells would have spread. I will always be grateful that this advice was disregarded and that having found the presence of those cells after the first surgery, my Hastings consultant believed a mastectomy was the best and safest precaution.
At the same appointment my consultant went on to discuss the next stage of my treatment. She said that, in view of the results, it was possible that I would not need to be given Herceptin.
Herceptin is recommended if the cancer has not spread into the lymph nodes and the cancer needs to be estrogen receptor/progesterone receptor (ER/PR)-negative or have one high-risk feature. High risk is defined as ER/PR-positive with one of the following features: tumor size >2 cm, age <35 years, or tumor grade 2 or 3.
This put me in a borderline category. She advised that my oncologist would discuss this with me at my appointment with him which had been booked in for later that month. She did put my head in a bit of a spin by saying “I would advise that you still attend that appointment.” To me that sounded like the decision had already been made. I can’t imagine why anyone would not attend a follow up with an oncologist, even just for peace of mind, but I guess there may be people who, for whatever reason, would be satisfied that they were out of danger. However, those appointments are also about prevention, not just cure, and I think it would be quite foolish of anyone to not keep all appointments made for them.
The consultant’s words affected me more than if she’d kept the options open. I didn’t want to give myself false hope but, at the same time, I couldn’t help analysing what she’d said to me and feeling optimistic. At the time of my diagnosis, I was told that Herceptin was typically administered alongside chemotherapy and that was the only option at that time. She had informed me that trials were being undertaken to establish how the Herceptin could be given without the chemotherapy but this option was not available yet. So it was still a case of all or nothing. All I could do was get through the agonising two week wait for the oncology appointment.
Let your faith be bigger than your fear
By this time I was able to do a bit more. I wasn’t driving but friends took me out for coffee, we were invited to have dinner at our friends’ house and I managed to go out for a couple of birthday celebration meals.
My husband invited me to a work ‘outing’ on 17th August. He is an architectural interior designer and has his own practice. They had put together the designs for a complete renovation of ‘The Botanical Brasserie’ at Kew Gardens and the purpose of that particular trip was for photos to be taken and some outstanding bits that needed attention. It was also a leaving/birthday do for one of his designers and a chance for the whole team to see the fruits of their labour! We travelled to London by car. It would have been too much for me to go by train as it was still relatively early on in my recovery. It was lovely to be included though. I am a Co-Director of the company but only in name really! I just tag along for the fun bits!
I had a follow-up plastic surgery appointment on 19th August at the Queen Victoria Hospital in East Grinstead. Everything was as it should be and I would be booked in for another appointment in about three months to discuss the next stage of reconstruction.
On 21st August we went to Brighton. Our son’s girlfriend had bought us a voucher for Christmas to go on the Brighton i360 and afternoon tea at the Hilton Metropole. We also went jewellery shopping for my pearl ring, promised to me for our 30th wedding anniversary. We had looked around and not been inspired so far but then we remembered that there are a lot of jewellers in the North Laine in Brighton. It didn’t take long! We looked in a few windows before discovering a lovely little independent shop with a display of less conventional styles. All of the rings in the window were prototypes of rings that you can have made bespoke to your own taste. I chose one with the pearl set into a circle and two diamonds set in a square either side. We discussed all the metal options and I decided on white gold in its raw state. I didn’t know this but most white gold items you get in high street stores are Rhodium plated but you can have it without. Left non-plated it creates a warm white tone rather than shiny like platinum which is more the case with the plated white gold. We were both very happy with my choice. It would take around two to three months until I could pick it up but definitely worth it.
“Pearls don’t lie on the seashore. If you want one, you must dive for it.” – Chinese proverb
The day finally arrived – 24th August 2022 – when I would find out whether I would be undergoing further treatment. The clinic seemed to have overrun so I was kept waiting for almost an hour. Consequently my nerves were in shreds by the time we were called in. The oncologist was a lovely, straight talking man. We talked through the sequence of events and the histology. Also the potential role of chemotherapy and anti HER2 therapy because of the focus of invasive disease. He said that he was reassured by the sentinel node biopsy and, in his judgement, chemotherapy and Herceptin would give minimal benefit and risk substantial side effects. He added that he would not recommend adjacent chemotherapy and anti HER2 therapy in my situation. This was truly music to my ears! It was exactly what I was hoping to hear.
He did feel that there was a role for anti-hormone therapy, primarily for risk reduction on the contralateral side. He explained that this would reduce by half the risk of subsequent pre cancer or cancer developing on the contralateral breast, in combination with the surveillance mammograms, and felt this would be a good strategy for going forward. I asked how they can be sure that there had not been a stray/random cell that had snuck away to somewhere else in my body and he replied “Never ask a doctor to say never!” He said he was as certain as he could ever be with the information he had. I was satisfied with this, coupled with the fact that I would remain under the radar of the breast clinic for at least the next five years and would have annual mammograms on my right breast.
He gave me a prescription there and then for 20mg of Tamoxifen to be continued until Summer 2027. I asked about side effects and he said the medication was highly likely to send me straight into the menopause. I was 54 and a relatively late ‘menopauser’ but I had been peri-menopausal for at least a couple of years and felt I had only been months away from the full menopause anyway. I would also almost undoubtedly put on weight. He said if I carried on eating ‘normally’ without taking this into account, it was likely I could gain around half a stone. It’s a small price to pay and, to be fair, the same for the majority of women who enter the menopause stage.
“Necessity is the mother of taking chances.” — Mark Twain
On our way home from the hospital I picked up the prescription. It is a daily tablet. I took my first one that day and, no kidding, that evening I felt like I’d been catapulted straight into the menopause! I had hot flushes that night and the symptoms have steadily increased over time. I will elaborate on this in my next blog……
“Even the darkest night will end and the sun will rise” – Victor Hugo (Les Miserables)
Hoping for a Happy Ever After 