The Beginners Guide to Breast Cancer – Part One
Many of you will know that almost a year ago, on New Year’s Eve 2014, we received the devastating news that I had advanced terminal cancer. Having told my six children on Christmas Day that they were going to have a new brother or sister, I had to tell them on New Year’s Day that I they may be about to lose their mummy.
Having breastfed and been pregnant for the past fourteen and a half years, and not carrying the BRACA gene, I had not a single risk factor for the primary breast and possible second primary of ovaries. There are only inadequate words for the feelings you have when told that the cancer is advanced, terminal and inoperable, in that order. I was told that I would need to arrange parental custody of my six children…arrange my funeral…and arrange a will. Being pragmatic and a doer, within the next two working days, I had done all of that. I had also started to arrange our wedding, which was set for Valentine’s Day, leaving us under five weeks to get everything in place from scratch. We were intending to marry later in the year, but had not set a date. When told the news by the breast consultant, just prior to an emergency breast ultrasound and immediate breast biopsy, she tactfully left the room for ten minutes, leaving us alone. I cried and vomited and cried some more, and asked my now husband if we could get married very soon.
It was a few more days before we were to meet with the oncologist, the gynaecology consultant and the specialist breast care nurse. There we were faced with the facts that I had been waiting for, following a rapid deterioration in my health and mobility since the previous July. Myself and our unborn baby had less than six weeks to live, the growth of baby would mean a high risk of total spinal cord compression which would possibly leave me totally paralysed within that time frame. I also had had two spontaneous rib breaks either side of Christmas, these would possibly puncture my lung as baby continued to grow.
Without baby, and immediate spinal radiotherapy treatment at Addenbrookes Hospital and immediate fourth generation chemotherapy and antibody treatment, I may have six months. I had been holding on for the possibility of delivering baby early naturally from thirty two weeks at Addenbrookes and delaying cytotoxic treatment until afterwards in order not to harm baby. I had thought that we had time, not much, but a little. In reality, we had no time. We had a closed door, not choices, not options. I needed to stay here for as long as possible, to be a mummy to my beautiful and precious six children, and to be a wife to my amazing husband.
I started chemotherapy and antibody treatment days later, following the birth and burial or our beautiful and perfect son David Caleb King, and had radiotherapy at Addenbrookes on my spine, as the secondary metastatic cancer had spread to my liver and to all of the bones, with a particularity high disease burden in my spine.
There were many terms used in the first days of the diagnosis and leading up to it, which I had never heard of before.
I could have done with a “Rough Guide to Oncology”, with extra maps and a glossary. So here is my version:
- Metastatic – cancer that spreads to other organs or parts of the body, for instance, lungs or brain from breast primaries.
- Secondaries – where the cancer spreads to, in my case, bones, liver and most recently, brain.
- Primaries – the source of the cancer, in my case behind the right breast and possible second primary on the ovaries.
- Docetaxel – Docetaxel (taxotere ®) is a chemotherapy drug used to treat different cancers including breast, prostate, non-small cell lung cancer, stomach and head and neck cancer.
- Herceptin -Herceptin can be used to treat:
- early HER2 positive breast cancer, following surgery and/or radiotherapy and chemotherapy to reduce the risk of the cancer re-occurring
- advanced HER2 positive breast cancer that has spread from the breast (metastatic breast cancer) – it can be given on its own or in combination with chemotherapy
- advanced HER2 positive stomach cancer that has spread out of the stomach (metastatic stomach cancer)
- advanced HER2 gastro-oesophageal cancer; where the oesophagus (food pipe) meets the stomach
Herceptin can’t cure metastatic breast and stomach cancers, but it can slow their growth and increase survival time.
- Pertusamab -Pertuzumab (pronounced per-chew-zoo-mab) is a type of monoclonal antibody. It is known by its brand name Perjeta. It also used to be called Omnitarg.Pertuzumab is a treatment for breast cancer. It is used before surgery for early breast cancer. It is also used for breast cancer that has spread (secondary breast cancer) or breast cancer that has come back in the breast (recurrent breast cancer). You have it in combination with the biological therapy trastuzumab (Herceptin) and the chemotherapy drug docetaxel (Taxotere).
Pertuzumab is also used in clinical trials for other types of cancers such as ovarian cancer and prostate cancer.
- Cold cap -Cold caps — tightly fitting, strap-on hats filled with gel that’s chilled to between -15 to -40 degrees Fahrenheit — may help some women keep some or quite a bit of their hair during chemotherapy. Because the caps are so cold, they narrow the blood vessels beneath the skin of the scalp, reducing the amount of chemotherapy medicine that reaches the hair follicles. With less chemotherapy medicine in the follicles, the hair may be less likely to fall out.During each chemotherapy session, you wear the caps for:
- 20 to 50 minutes before
- after each chemotherapy session (the amount of time you wear the cap after the chemotherapy session depends on the type of chemotherapy you’re getting). The West Suffolk Hospital offer the Paxman Scalp Cooling System caps connect to a cooling/control unit that then chills the cap to the proper temperature. The Paxman cap is chilled by the unit, so the same cap is worn throughout the treatment.
Because the caps are so cold, some women get a headache while wearing the cap. Most women get very cold, so it makes sense to dress warmly and bring warm blankets with you if you decide to try the cold caps. Taking paracetamol an hour beforehand can also help dull the pain of the extremee cold, as can having plenty with you to do to distract you – whether it is something to read, good company – patient friend or partner, something to listen to or do, for instance an ipod, Kindle, tablet or knitting, hand sewing, crochet, puzzle books, etc.Women who use cold caps during chemotherapy are advised to baby their hair during treatment:
- no blow drying, hot rollers, or straightening irons
- shampoo only every third day with cool water and a gentle shampoo
- no colouring until 3 months after chemotherapy is done
- gentle combing and brushing
In Part Two, I will cover chemotherapy and cold capping in more detail, in the hope that some information may be helpful to those just starting out.