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Overview
Do you have a close relative who has died from, or is experiencing, aggressive breast, ovarian or prostate cancer? Have they been tested for the BRCA gene mutation? Have you? At the age of 35 and following the death of her mother from ovarian cancer, Clarissa Foster was found to carry a harmful mutation in the BRCA2 gene which drastically increased her risk of developing breast and ovarian cancer. She searched for a book that would help her to understand the full extent of what it meant to carry a harmful mutation, the options available to her to lower her risk and, most importantly, how it would feel to undergo preventive surgery. Finding nothing that answered her needs she set about reading all the available medical literature and liaising with relevant medical professionals to answer her questions. This book is the result of that research and of the decision she took based on it - to have a full mastectomy and oophorectomy. Within the context of her own painful experience of family cancer and of elective surgery, Clarissa explains what the BRCA mutation is, what it signifies, what the individual's choices are and what the fall out can be in terms of a woman's body image, identity and sexuality.
Product Details
| ISBN-13: | 9781781611210 |
|---|---|
| Publisher: | Hammersmith Health Books |
| Publication date: | 11/13/2017 |
| Sold by: | Bookwire |
| Format: | eBook |
| Pages: | 320 |
| Sales rank: | 711,396 |
| File size: | 3 MB |
About the Author
Clarissa Foster is a qualified Human Biology teacher at FE level and an experienced writer for the pharmaceutical industry. She is also a health blogger and an ‘expert patient’ in relation to the BRCA mutation. To produce this book she has worked with Consultant Gynaecological Oncologist, Alasdair Drake and Consultant Plastic & Reconstructive Surgeon, Michael Taylor.
Read an Excerpt
CHAPTER 1
How it began
In 1995, at the age of 44 years, my mother developed a few symptoms that were unusual, including a bloated abdomen, backache, needing to pass urine more frequently, constipation and general malaise. I was 16 years old at the time and at sixth-form college.
My mum had always been a fit and healthy person and was very rarely ill. She ate a healthy diet, very rarely drank alcohol – her only bad habit was smoking. She had always enjoyed a very slim, petite figure throughout her life. When she developed a swelling in her lower abdomen and didn't feel her normal self, it was clear that something was wrong.
She visited her family doctor on numerous occasions but, sadly, her cancer was missed and a number of months passed before it was finally diagnosed. A blood test was carried out to look for the cancer antigen 125 (CA-125) which is produced by some ovarian cancer cells. The test revealed an elevated CA-125 level of 450 units/ml and, given the presence of a mass, ovarian cancer was strongly suspected.
Within a couple of weeks, she had had a total abdominal hysterectomy with bilateral salpingo-oophorectomy to remove her ovaries, fallopian tubes, womb and cervix. After her surgery, the surgeon explained that he had found a tumour about the size of a small grapefruit on each ovary. There was also evidence that the cancer had spread to the peritoneum – a membrane that lines the abdominal cavity and supports the abdominal organs.
The doctors soon confirmed that she did, indeed, have ovarian cancer and she was diagnosed with advanced stage (stage III/IV) bilateral ovarian cancer with metastases to the peritoneum. Very soon afterwards, she started a course of cisplatin chemotherapy, typically used to treat ovarian cancer.
Seeing my mum endure chemotherapy was really tough. After each chemotherapy session she would be very ill and unable to carry on everyday life. She would spend the next few days in bed, only surfacing to vomit. She also experienced some of the more occasional side-effects, including a metallic taste to her food which, in turn, led to a loss of appetite and subsequent weight loss. She later went on to develop a permanent ringing in her ears (tinnitus), a very common side-effect with cisplatin treatment.
Probably the most upsetting side-effect was watching my mum lose all of her hair, including her eyelashes and eyebrows, within a few weeks of starting chemotherapy. She was a beautiful, proud lady who always took care of her appearance and being a hairdresser by profession made it all the more upsetting. Clumps of her hair started to fall out and, with this, my mum lost confidence in her appearance.
I would spend my breaks from coursework and exam revision sitting on Mum's bed, holding her hand, or stroking her head and just being there for her in whatever way I could. I loved her so much and wanted to do whatever I could to make life more bearable for her. Living through a diagnosis of cancer with someone you love is incredibly tough. I felt very alone and I carried a huge weight of emotion on my shoulders. I kept these emotions to myself, often pretending that I was okay so as to not add to Mum's stress levels but, in reality, I was struggling and terrified of losing her. I didn't turn to friends for support because I felt they couldn't possibly understand what I was going through. I lost any sense of being carefree, often finding it hard to enjoy myself. All the while, I felt overshadowed by the fear of my mum's illness and of one day losing her to cancer. It forced me to grow up very quickly and I often felt more mature than friends around me.
Over the course of my time at college, my mum underwent several courses of chemotherapy as the cancer always returned. I spent many nights during this time unable to sleep, wondering if Mum was going to die and, if so, when this would be. Would she deteriorate suddenly, or would it be gradual? Would she go to bed one night and not awake the next morning? I had no idea – how could I possibly have any idea? I had never seen anyone die before. I decided to visit the nurse at my family doctor's and I asked if she thought she would die. The nurse at the practice said, 'Yes, she is very likely to.' Hearing this wasn't easy but, in my heart, I knew it was true.
I worried a great deal about whether or not to go to university when I turned 18 years old – what if Mum died whilst I was away from home? This thought terrified me. I wondered if I should delay going to university and stay at home so that I could continue to support her until the end. I asked her if she would like me to defer my application but, as any mother would do, she told me to continue with my plans.
There were periods when my mum was given the all clear, and told she was in remission, but the fear of the cancer coming back continued to hang over us all and, sadly, these periods of remission were only ever short-lived. The cancer always came back. My mum never returned to being the same, relatively carefree person that she had been prior to her diagnosis of cancer.
In the summer of 1996, during the revision period for my final set of A-level exams, my mum went out for what I thought was a shopping day with a friend – I was pleased to see her doing something nice for herself. I studied hard that day, as I had always done, and I was looking forward to the end of my exams in a few days' time. Late afternoon, I heard her return home; she popped into my room to see how my revision was going. I immediately noticed that both her arms, and the back of one hand, had cotton wool and tape stuck to them. My heart sank. The cancer was back and she had started yet another course of chemotherapy. I wondered just how much more her little body could handle of this aggressive chemotherapy.
I had been really looking forward to finishing my last exam and enjoying the summer before moving to Loughborough University and, now, I wondered how on earth I would be able to leave my mum. I again considered postponing university but, at the same time, now that it was only round the corner, I wanted to go. I had worked so hard to get to this point and I had been looking forward to starting a life for myself. I tried my hardest to focus on my studies, at least for a few more days until I had finished my exams.
In August, my A-level results were available for collection from my college. I was excited, and nervous, but I was confident that I would have achieved the grades I needed. I opened the envelope as quickly as I could, eager to see my results. I was so pleased to have exceeded the grades required to study Human Biology at the university of my choice. Despite the tremendous strain I had been under throughout my time at college, all of my hard work had paid off.
At the end of September 1996, I left my home and travelled to Loughborough. I was excited about the start of my new life, but it was overshadowed by the worry of leaving my mum. Mum and I arrived at the campus and we were directed to my halls of residence. The room was basic, but perfectly good enough, and I was excited that this would be my home for the next year.
Once I had finished unpacking the time had come to say goodbye, but I didn't feel ready to do so. I felt so much emotion come to the surface but, as always, I held back the tears. I looked into my mum's eyes; neither of us were able to speak. I wondered if this would be the last time I saw her and I could feel that she was asking herself the same thing. Still trying to hold back my tears, I told her I loved her and we cuddled for longer than we had ever done before. Saying goodbye to my mum on that day was one of the hardest things I have ever had to do in my life.
My mum continued to battle with her cancer throughout my first and second years at university, but the more time passed, the more I began to realise that she couldn't fight it forever. Heading home for the Christmas of my second year, I was looking forward to seeing my mum; I had missed her. Sitting on the train heading to London, I couldn't help but feel that this would be her last Christmas. I imagined future Christmases without her and how they wouldn't be the same again. I felt deeply saddened. Christmas Day was overshadowed by this sadness and I could see in my mum's eyes that she knew it would be her last too. I felt close to tears for most of the day, but I tried my best not to dwell on it and instead did my best to make the most of this time with my mum.
In early January, the term restarted and I was soon into my exam period. I continued to have anxiety that mum didn't have long left and, in February, I made the decision to change accommodation to allow me to remain on the campus throughout my final academic year. I knew that if Mum died, our family home would have to be sold, at which point I wouldn't have a home to return to for the holiday periods.
In May, just prior to my final exams, I made a call home, but there was no answer. I knew instinctively that something was very wrong. A while later, I 'phoned home again and this time someone answered. I was told that my mum had been taken into hospital as she was in a lot of pain, but this was all I was told. It was far from the full truth, I knew that, and I realised information was being kept from me because of my exams. I thought about returning home, but I couldn't as my first exam was in a few days' time. I considered informing my department, and delaying my exams, but that seemed more stressful than getting the exams out of the way as soon as possible. I reassured myself that if Mum's death was imminent then, surely, I would be asked to go home. I plodded on with my revision, but it was very hard to concentrate and I found it hard to care about my exams; they seemed so insignificant in the scheme of things. But, at the same time, I knew they were vital to secure the future that I had planned for myself.
My exams came to an end and, in the last couple of days, I took some breathing space to gather my thoughts. I tried to prepare myself for what I knew was coming, but I dreaded the idea of going home to see my mum die. Arriving back home, I headed up the stairs towards my mum's bedroom. I opened the door and saw her sitting up in her bed. She started to cry and described how awful it was to have to tell me that she was dying. My heart sank and I was overcome by the deepest sense of sadness. I was speechless, but yet desperately trying to think of anything to say to make it better. Inside I broke down, but outwardly I wanted to remain strong for my mum. I questioned what good crying would do anyway. I had cried so many tears over the last couple of years and I had reached the point where I was sick of crying.
Shortly after my return home, Mum went back into hospital to help manage her pain. The consultant came and explained to me, in front of my mum, that she was dying and that we needed to start making arrangements. I felt so sorry for Mum having to hear those words yet again and, for me, hearing it from the doctors made it all the more real. Within a few days, the hospital transferred her into a hospice, to make her end as comfortable as possible. She became gradually weaker and weaker.
I had no idea what it would be like to see someone die; I had never seen anything like this before and, of course, this isn't the sort of thing taught at school, or college. I asked the nurses what to expect to help prepare myself. One of them described to me what might happen and I tried to imagine each of the possibilities she'd suggested so that it wouldn't be so frightening when the moment came. I barely slept during this time; I just felt so scared and would only fall asleep as it started to get light outside.
In early August my mum started to deteriorate further, sleeping a lot more in her last few days. I realised that she was beginning to let go and in some ways this brought me comfort knowing the end was near for her sake. On 4th August, I had a particularly strong sense that I needed to go to the hospice and I knew what this meant.
Arriving there, I was immediately met by one of the nurses. She appeared stressed and asked if I had got the message to come as the end was near. The call never arrived, but I had instinctively known anyway.
I walked into Mum's room and I could see she was in a lot of pain – her abdomen was massive. The nurse explained that it had most likely perforated. I felt really helpless; I just wanted it to be over for my mum now – she had been through enough. The nurse came in to give her some more morphine, but it barely seemed to take the edge off the pain.
Around 11 in the evening, it was clear that Mum was deteriorating further. A doctor came in and checked her pulse. I watched him nervously, frightened by the concern on his face. I felt helpless, and heavy-hearted, just sitting there and waiting for a moment that I had feared so much over the last four years. I asked the doctor if she was okay – silly really when she was far from okay. I asked him if he thought she was going to die soon. 'I'll be surprised if she's still here in the morning,' he responded. I lowered my head and then felt the doctor's comforting hand on my shoulder. I smiled and thanked him for checking on my mum.
Mum continued to go downhill, yet midnight came and went. Out of nowhere, it seemed, I started to panic. I couldn't bear the tension any more. I got up, opened the door and I ran so fast down the stairs that it felt like I was flying. I heard screaming, and realised it was coming from me. Part of me was trying to remain strong and I tried to stop myself, but I couldn't. A nurse came running out of the office and I begged her, 'Please help my mum; please, I'm not ready for her to die!' I realised as I was saying those words that there was nothing that anyone could do to save her, but I was terrified and, even with the years I had had to prepare myself, I still wasn't ready for this moment.
The nurse held me and said she couldn't do anything more, but I didn't want to be held. I wanted to run. I wanted to run out of the hospice and far away from everything. I ran from the nurse and headed for the front door, but somehow, I forced myself to stop, realising that, if I missed Mum's last moments, I would regret it for the rest of my life. I forced myself back up the stairs and again sat down in the chair. My heart was racing faster and harder than it had ever done before. Only moments later, she lapsed into the final stages. Her breathing became shallower and I watched her take her last breath. I remember looking so closely, willing her to breathe again, but she didn't. I remember saying, 'She has gone.' I looked at the clock: it was 12.50 am on the 5th August 1998.
Again I panicked and flew back down the stairs screaming. The nurse came running out, this time realising that my mum had died. She tried to comfort me, but I couldn't bear to be touched. I felt consumed by grief and had the most awful feeling in my chest and stomach that words can't even begin to describe.
After a while, I managed to calm myself down. For my mum's sake, I felt pleased that it was all over but I knew that, for me, it wasn't. I would now have to go through the long process of grieving and living the rest of my life without my mum. I was only 20 years old and life just wasn't fair.
I thought about how I would never hear my mum's voice again, or speak to her on the 'phone. She wouldn't see me turn 21 in a few months' time, nor would she see me graduate. I thought also about how she would never meet my future husband, or be there on my wedding day, or see her grandchildren. Our family home would have to be sold and my dog whom I adored would have to be re-homed. I was losing everything I cared about and every ounce of security that I had. I was heart-broken, deeply saddened and very frightened of the future that lay ahead. I was terrified at the prospect of returning to Loughborough in a couple of weeks' time to finish the final year of my degree. I felt that my life was completely unbearable and what I had ahead of me insurmountable.
After the funeral I travelled back to Loughborough to finish my third, and final, year, but I really didn't know if I had the strength to get through it. I had nothing left in me but, at the same time, I knew that any bit of strength I could find would be directed towards my degree and towards making a great future for myself.
(Continues…)
Excerpted from "Understanding BRCA"
by .
Copyright © 2017 Clarissa Foster.
Excerpted by permission of Hammersmith Books Limited.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Title Page,
Dedication,
Forewords,
Explanatory note,
Acknowledgements,
Introduction,
Section I: Living with BRCA gene mutations,
1. How it began,
Section II: Understanding BRCA gene mutations,
2. The history of BRCA,
3. What is the BRCA gene?,
4. The effect of BRCA gene mutations,
Section III: Cancer and its relationship with BRCA gene mutations,
5. Cancer,
6. Breast cancer,
7. Male breast cancer,
8. Ovarian cancer,
9. Uterine cancer and BRCA mutations – is there a link?,
10. Prostate cancer,
11. Other BRCA-associated cancers,
Section IV: Managing your risk,
12. Referral to a specialist genetics service,
13. Screening,
14. Chemoprevention,
15. Risk-reducing surgery,
16. Survival impact – efficacy of risk-reducing surgery and breast screening on reducing cancer mortality,
17. The importance of a healthy diet and lifestyle in cancer prevention,
18. Other useful information,
Section V: My personal journey,
19. Diagnosis and decision making,
20. My risk-reducing surgeries,
21. Effect on my body image, identity and sexual functioning,
22. A final thought,
Glossary,
Appendix – European BRCA1/2 mutations,
References,
Resources,
Index,
About the author,
Copyright,