The physical recovery from my lumpectomy was good. I healed well and, apart from a few niggles, I had hardly any pain. However, my anxiety waiting for results was off the scale. It was a much longer wait than I had anticipated and I spoke to my Macmillan nurse regularly. I kept thinking “no news is good news” but also why was it taking so long?
Finally an appointment with the consultant came through and I was due to see her on Tuesday 15th February 2022 at 10.00 am, almost six weeks after my surgery.
The evening before, I went with my husband to see ‘Chicago’ at the Congress Theatre in Eastbourne. It was Valentine’s Day and we’d booked it months in advance. I’d seen it twice but he’d never seen it. He loves jazz and we both love a bit of Fosse so I knew he’d love it. Anyway, what’s not to like for him about lots of beautiful women dancing in sexy outfits….?! As I’d hoped, he thought it was fantastic. It was a good distraction for my shattered nerves but predictably I didn’t sleep well that night.
My husband is renowned for his terrible timekeeping and I like to be punctual or, even better, early for everything so I knew it wouldn’t help my stress levels if we had to do our usual rush and ‘white knuckle’ ride to get to my appointment. He is very literal about the time it takes to get anywhere and never allows for potential traffic issues and delays. The route to the Conquest Hospital is often very busy, whatever the time of day, and my anxiety was at full stretch so he needed to be fully respectful of that. To be fair, with a bit of nagging from me, he wasn’t too bad and we actually arrived with some time to spare. There’s a car park opposite the hospital which is much cheaper and offers a discount on coffees if you buy a parking ticket so we spent a few minutes sitting with a coffee but I was very agitated and wanted to get checked in so we didn’t stay long.
My niece works in the same outpatients clinic as my consultant and was working that day. She came over to speak to us before we were called in which turned out to be quite a while after my appointment time. These clinics do tend to run late. I guess patients just can’t be rushed in these circumstances. Ironically I was unknowingly about to be one of those very patients.
I was finally called in and my worst fears were realised. The news wasn’t good. The results confirmed that the cancer was at a more advanced stage than first thought – from pre-stage (early) cancer to stage 2. They had found HER2-positive cancer cells.
“HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2). This protein promotes the growth of cancer cells.
In about 1 of every 5 breast cancers, the cancer cells have extra copies of the gene that makes the HER2 protein. HER2-positive breast cancers tend to be more aggressive than other types of breast cancer.”
HER2 testing is not done routinely for ductal carcinoma in situ, except as part of a clinical trial, so I’m very grateful to have had a consultant who wasn’t satisfied with the original diagnosis and questioned the potential for some unidentified cancer cells and her decision to take a wider margin. If she had accepted the findings of the Brighton clinic and only been concerned with the area of cells which were initially identified as DCIS, it is unlikely that they would have found the HER2 cells which were found directly behind my nipple.
This information was a complete game-changer and meant that, far from being over, my journey was really only just beginning. It doesn’t matter how much you prepare yourself for either scenario, it’s still a massive shock.
There was a lot to take in but I had to face it. No question. The consultant talked to us about all the options. She said she could do another lumpectomy and hopefully remove all the bad cells but it was wide spread and there were no guarantees. She felt the best option was a mastectomy but it would be my decision. A mastectomy is very daunting and a huge thing to face but I felt that I had a better chance both medically and cosmetically. My mum had partial removal and it definitely affected her confidence about the clothes she wore. She had probably lost about one third of her breast and never considered using prosthetics or undergoing reconstruction. Obviously this is about life or death, not vanity, but I was lucky enough to have options. I knew that if I didn’t opt for a mastectomy I would always be worried.
We discussed the different types of reconstruction and from the start I said I would rather not have implants. The consultant talked to me about natural reconstruction as an alternative. This is called DIEP (Deep inferior epigastric artery perforator) Flap Breast Reconstruction and is one of the most common breast reconstruction procedures done after a mastectomy. The consultant didn’t attempt to persuade me either way but she gave me some facts to consider. First of all, if successful, implants only last around ten years so you have to undergo further surgery in the future to replace them. They also carry more risk of complications, such as infections or leakage. If that does happen it can sometimes result in reconstruction no longer being an option. She also said that the organic way is more natural and aesthetically pleasing, particularly if it is only one breast being removed as it is easier to get the symmetry with the remaining breast and it can be tweaked if there happens to be any noticeable differences between the two. For me personally, I preferred the idea of using my own fat and tissue (autologous) rather than a foreign object. It is a personal choice though and that’s not to say I don’t respect other people’s decisions on that.
The natural reconstruction also comes with risks and is very invasive so it’s not the easier option by any means.
In a DIEP flap, fat, skin, and blood vessels are cut from the wall of the lower belly and moved up to your chest to rebuild your breast. With a DIEP flap no muscle is used to rebuild the breast so most women recover more quickly and have a lower risk of losing abdominal muscle strength with this type of procedure.
Although I decided very quickly the route I wanted to take the consultant was still keen for me to go away and think about it first. As I wasn’t sure what the timescales would be I tentatively mentioned a family holiday we had booked for Easter 2022. It had been postponed twice due to Covid and we were all really looking forward to it. I stated that I knew it wasn’t the most important thing in the circumstances but she replied that, on the contrary, she believed it was very important for me to have the holiday and, in any case, she didn’t think the surgery was likely to happen before then. If I opted to have the DIEP reconstruction it would have to be done at the Queen Victoria Hospital in East Grinstead, a specialist NHS hospital providing life-changing reconstructive surgery, burns care and rehabilitation services for people who have been damaged or disfigured through accidents or disease. The surgery would be undertaken by both the breast surgeon and a plastic surgeon and would take most of the day so both diaries and theatre availability would have to be coordinated.
She added though that she thought, with the new information that they now had, it would be sensible to remove a couple of my sentinel lymph nodes from my armpit on the left side, just to be absolutely sure that they were clear. Knowing that it helps me to have something going on and not just a long anxious wait she suggested that I could have the lymph node biopsy in the meantime. It would also mean one less thing to have done when I had the mastectomy. I agreed that this would definitely help me so we sorted out a date and she booked me in for Wednesday 2nd March 2022.
Directly after the appointment we were taken into a different room to chat with one of the breast care nurses to go through what we’d been told and to check we understood everything or whether we had any questions. By this time I was crying a lot and found it hard to talk. It was all so overwhelming. I did manage to ask some questions about the chemotherapy, like how many rounds she thought it would be and whether I would lose my hair. Unfortunately she said that all chemotherapy for breast cancer results in total hair loss. I didn’t know that. Again she advised us to go away and consider the options for surgery and to contact her once we were confident with the choice. Then she gave me more leaflets….
As well as the surgery, the consultant told me about a particular drug called ‘Herceptin’ which is the brand name of a medicine called trastuzumab. Herceptin can help control the growth of cancer cells that contain high amounts of HER2 and works by blocking the effects of HER2 and encouraging the immune system to attack and kill the cancer cells. Herceptin can be used to treat early-stage HER2 positive breast cancer, following surgery, to reduce the risk of the cancer coming back. She added that it is usually administered alongside chemotherapy initially then once the chemotherapy is finished, by injection every three weeks for twelve months.
During the same appointment we discussed family history and it was interesting to hear that HER2 was only discovered in 2006 and the targeted drug developed specifically to treat it. This would mean that my mum whose primary breast cancer diagnosis was in 1993 would not have been tested for this. She may or may not have had the same strain of breast cancer. I do know from attending appointments with my mum following her secondary diagnosis that her primary diagnosis was an oestrogen receptor positive cancer. I doubt we’ll ever know whether the cancer was HER2.
Directly after the appointment we were taken into a different room to chat with one of the breast care nurses to go through what we’d been told and to check we understood everything or whether we had any questions. By this time I was crying a lot and found it hard to talk. It was all so overwhelming. I did manage to ask some questions about the chemotherapy, like how many rounds she thought it would be, how often and whether I would lose my hair. Unfortunately she said that all chemotherapy for breast cancer resulted in some thinning of the hair but, more often, total hair loss. I didn’t know that. Again she advised us to go away and consider the options for surgery and to contact her once we were confident with the choice. Then she gave me more leaflets….
When we left, my niece was in the waiting area anxious to hear how I’d got on. She could instantly see that I’d been upset and commented on how long we’d been in there, almost two hours. I think she had also been expecting it to be straightforward and all sorted.
A letter was sent to my GP with a copy sent to me, summarising the consultation. I found it really helpful to have the exact details of the results so I could gain a better understanding of the diagnosis.
“Diagnosis: screen detected carcinoma of the left breast. Left wire- guided wide local excision 5th January 2022 together with lateral cavity shaving. Histology confirmed 37 mm of intermediate and high-grade ductal carcinoma in-situ together with an invasive component measuring 4 mm which has been graded as Grade 2 and is ER 7/8 and HER-2 positive. The DCIS component is ER positive 8/8. There is no vascular invasion. There was DCIS in the lateral shaving. DCIS lies 1.5 mm from the lateral margin, 0.5 mm from the inferior margin, 0.8 mm from the medial margin and 2 mm from the superior margin.
In view of the above histology we have discussed left completion mastectomy and sentinel node biopsy of the axilla to stage the axilla. Mrs Hammond does have a family history of breast carcinoma as her mother was diagnosed and treated at the age of 45 and died of bone metastases at the age of 64. She would therefore prefer left completion mastectomy and reconstruction rather than contemplating further margin excision.
We have outlined the different forms of immediate reconstruction. Mrs Hammond is not keen on implants and is considering autologous reconstruction and has taken away all the information leaflets from the breast care nurse to consider her options further and will return for further discussion to decide whether she would like to proceed in which case I will refer her to the plastic surgeons for consideration of a DIEP flap and skin-sparing mastectomy.
In the meantime we have discussed upfront sentinel node staging of the axilla prior to undergoing immediate reconstruction and I have gone through the risks and benefits and also the potential complications of axillary surgery and have booked a date on my list at the Conquest for left sentinel node biopsy using dual technique radiocolloid and blue dye injection on Wednesday 2nd March.”
When we left the hospital my husband said “I think you knew, didn’t you?” In all honesty, there was a bit of me that felt unsettled by the long wait for results. I just wish I’d been wrong….
However, the toughest part of my day wasn’t over yet. I had to break the news to my family and friends, knowing my daughter would take it particularly hard…
“You never know how strong you are, until being strong is your only choice” – Bob Marley
Hoping for a Happy Ever After 