Lisa’s Formula
Surgery
Chemotherapy and hormone treatment with drugs including Tamoxifen,
Zolodex, Femara, Aromasin, Docataxel with AMG706, Xeloda.
Radiotherapy
Radio Frequency Ablation
Radio-active Bead Treatment
Slippery Elm Powder
Iscador drops
Vitamin C
Vitamin E
Fish oils
Anti-oxidant compounds
Liquid mushroom extract for immune system
Naturopath’s herbal tonics
Aqua aerobics
Pilates
Meditation and Guided Imagery
Yoga, Reiki
Reflexology
Lisa Brook was first diagnosed with breast cancer in 1996 aged just 33. After five clear years a routine annual check showed a secondary tumour in her liver the day after returning from her honeymoon. Yet eight brave and challenging years on, Lisa continues to feel well and, though still in a cocktail bar of treatments, works full time as an online training consultant for a major bank. ’As a couple’ she says ’my husband Jeremy and I have always fought fairly aggressively together to find medical answers, what other tests we could have and the right people to work
with. Jeremy has always come with me to every appointment.’ Lisa, Jeremy and their three dogs live by the beach, an hour from Melbourne Australia.
’On reflection, it was difficult mentally, yet physically manageable for me to get through breast cancer at 33. I had no symptoms at all, but one day in the shower, I found a breast lump that was already 4cm and oestrogen receptive. I had a lumpectomy, four cycles of chemo, six weeks of radiotherapy and another
four cycles of chemotherapy. Of course, it was pretty gruelling and very scary, but I’ve always had a great family and circle of friends. I think it’s the shock and the feeling of being backed into a corner with nowhere to go, that seems so terrifying. But I’m a pretty practical person so, concluding that I couldn’t
change what I’d got, I just got on with it. The issue of children hit me pretty hard. I wasn’t with anybody at the time, but I had some eggs frozen at that point, just in case. They are still waiting. I coped pretty well, with only six weeks off work altogether. The fear of chemo and not knowing what to expect, was worse for me than the actuality. Once I’d broken through the first cycle and knew what was involved, I felt more robust. I lost all my hair and felt terribly tired, but anti-nausea tablets kept any sickness at bay. My mum was a great researcher into complementary and homeopathic remedies, so I took slippery elm powder to protect my gut from the medications which strip everything away, Iscador drops to boost the immune system, along with many other supplements from a naturopath.
’Treatment in Melbourne was good and fairly accessible, but wherever you are, I think you have to work quite hard at finding good people whom you like and respect and always asking the necessary questions like ’What else is available?’ At one point for instance, I was told by one specialist ’We never operate on liver secondaries’ You then need to ask ’Why?’ and be quite pro-active in the process. Cancer conjures up such terrible fears, but this is my 12th year after being diagnosed and I try to treat it as a chronic illness a condition you can generally live with, not a terminal disease. My mother sadly developed breast cancer after me, but hers was a very different, aggressive form. (HER2 Positive). A year after diagnosis it had spread to her spine, the next into her liver.
’It was quite by chance that I met my English husband Jeremy in 2000. I had been working on a six week project in London and, after changing a flight home to Australia to an earlier day, I found myself sitting next to Jeremy. It was his first day in a new job. I was travelling home to Australia and he was on a buying trip to Hong Kong. We swapped contact details and kept in touch for a year despite being at different ends of the globe. We then thought we had better meet to see if our eight hour phone conversations and emails would be as good in person! He came to visit me in Australia for two weeks. Much to the surprise of family and friends four days after he arrived we announced our engagement. A few months later I took a career break from my job in Australia and went to the UK to be with Jeremy. We returned to Australia for a fortnight to be married in March 2002 - 60 people at an old Victorian hotel by the beach. A few days before the wedding I was taking my mother to hospital for her treatment. As I was due for my annual tests at the same hospital, I thought that whilst I was there I might as well have them done rather than waiting until I got back to the UK. As far as I was concerned there was no particular anxiety about the tests. I felt fine and we were off to a glorious honeymoon on the Great Barrier Reef. I expected the follow-up meeting with the consultant to be a pleasant affair with me saying ’This is my husband.’ But talk about going from one extreme of emotion to another: they’d found my tumour markers had escalated and I had a 5cm tumour on my liver. Poor Jeremy he’d signed up for lifelong marriage only to find his wife had advanced cancer. We were due to fly back to the UK two days later. Faced with this diabolical situation we boarded the plane complete with scans and a recommendation to the fantastic Steve Johnston at the Royal Marsden. Very luckily, having ended up doing some work in the UK for my Australian company, I had private health cover and I could also access the health service as Jeremy’s wife. All the way through we’ve found choice, flexibility and good access to experts we needed.
’As I was feeling so well, and the tumour was odd-looking and quite encapsulated, there was some talk of whether it was indeed malignant. So we faced six weeks of uncertainty and more MRI and PET scans. How did we cope? It’s one of those strange things that we just got on with it. I remember when I was first diagnosed in 1996 thinking there could be no worse news to receive than you have cancer. I was wrong being told you have secondary cancer is debilitating, gut-wrenching and terrifying. Every day we live with the thought of having limited time together, which in some ways give tremendous freedom of choice if there’s ever some doubt as whether or not we should do something special, take this holiday or that treat, we say What the heck! And we go for it.
’April 2002 was a particularly devastating time for us: my tumour did turn out to be malignant and my mother died six weeks later. In a race against time, we got back to see her a day before the end. It was a challenging time seeing her fade and pass away, knowing that I had been given a similar diagnosis.
Back in England I was put on a series of drugs to shrink the tumour all of which worked for a time
Tamoxifen (a hormone treatment), then a monthly injection of Zolodex which shuts down the ovarian function thereby reducing the production of hormones to which the tumour was receptive. As a result, the tumour started shrinking. At the same time I was also referred to Prof Andy Adam at St Thomas’ Hospital another wonderful man, who did a procedure on the liver tumour called radio frequency ablation (RFA), which I’ve had many times since and always with good success. Basically they go in with a fine needle and cook the tumour with microwave radio frequency. Tumours don’t like heat. It’s quite a localised procedure, so despite a general anaesthetic, you are only in hospital overnight at most. My tumour was so large; it took four goes to reduce it about 95 per cent. The last little bit was so close to my diaphragm that it would have caused far too much pain to cook. This is where radio ablation has its limitations, because all the possibilities depend on location, access and aspect.
’The next question was whether they could operate to remove the last remnants. When the liver tumour appeared, they said that they tend not to operate on secondaries from breast cancer. My guess is that’s because cancer has usually travelled elsewhere in the major organs if it’s reached the liver. It’s more unusual for breast cancer like mine to spread to one contained place in the liver, and not into the bones as well. I’ve been so lucky that there’s been no further spread. Working with both my consultants Steve Johnston and Prof Andy Adam, I was referred to a liver specialist Prof Roger Williams and surgeon Nigel Heaton at the Cromwell both brilliant in their field. Both were very positive about the possibility of surgery. I have two powerful memories from Prof Williams one is his certainty that surgery was a good idea a must have because I was so young. The second is that just before I was to go into theatre he wished me good luck. because you will need it Prof Williams had a direct approach but a very kind heart! At the same time I also had a consultation at the Homeopathic Hospital in Queen Square and through them saw Professor Sikora at the Hammersmith. Prof Sikora was fabulous and just so positive. One of the keys for me has been finding the right doctors, who transmit the right energy and attitude. Prof Sikora said Oh, you have so much to live for and you are doing so well. It’s great that you are also feeling well. He was very positive about future options and I’ll never forget him. We have been SO lucky both in the UK and in Australia with the wonderful team of doctors that we have been fortunate to meet and have been willing to work with us on pursuing different treatment options. All this time we still did have our lives and I was working three days a week throughout. This was quite important, as it normalised things. I didn’t want to live my life fighting cancer. It was just a part of my life, just an aggravation I had to learn to live with. Jeremy and I view it as something that comes, is treated and goes away until the need for more treatment. This philosophy doesn’t lessen the pain when things come round, but it does help you believe that you are not going to die tomorrow.
’The liver surgery was pretty gruesome at the time, and I believe quite dangerous. It involves being in intensive care for at least 24 hours. Jeremy tells me I was in a lot of pain but fortunately I don’t remember too much about it. It was very hard for Jeremy to see me in intensive care and needing morphine for the pain. Getting to shower three or four days after the operation was a massive exercise and you go through a lot of physio to start walking again. It’s amazing what you use your stomach muscles for. But knowing the tumour had been successfully removed was psychologically so well worth the pain for me. It gave us a huge emotional push. 60 per cent of my liver was taken away, but within 10 days it had grown back to full size.
’Surgery left me with a 34 cm scar across my middle, but I was back at work about six weeks later, albeit moving fairly gingerly! Given the all-clear, we then decided to make the move we’d always
planned and return to Australia. That’s been a great decision which has given us a wonderful lifestyle living by the beach and the opportunity for Jeremy to open his own retail furniture store, which he could probably never have done in the UK, even after 30 years in the business. Also in my situation, I wanted the support network of family and friends. It was hard leaving the UK as Jeremy’s three daughters (all in their twenties) are still there but we try and keep in touch as much as we can using phone, email etc. I know he misses them terribly.
’It was disappointing to have another tumour detected in my liver only about a year after surgery, in March 2004. I’d hoped to get more time than that. So I then went on to another hormone treatment, Femara whilst still on the Zolodex injections. I decided at this point to have my ovaries out so that I could stop the Zolodex quite a hard decision, because it evoked the realisation that I was probably now never going to have children, though the frozen eggs remain. In the September, a further spot was found on my liver and I had another RFA (ablation), this time in Australia. Another year passed before a new tumour on the liver was detected in Aug 2005. I had another ablation treatment on that spot and also changed to a new hormone treatment Aromasin. In Feb 2006, three new spots were found in the liver which were also ablated and by June 2006 growth was found in a previously ablated spot so it was clear that more chemo was called for.
’My oncologist in Australia is au fait with many new trials so, with a bit of trepidation and a lot of hope, I then went on a Phase I trial with docataxel chemotherapy plus the trial drug AMG706 a new drug which works by angiogenesis - cutting off the blood supply that feeds tumours. Going on the trial was quite a big decision and fairly scary too. At phase one they are just determining what the right dose is, so it feels you really are one step up from a laboratory rat. There’s a lot of documentation to read through and they confront you with every eventuality all the worst things that can happen. On the plus side you are monitored very closely and it’s heartening to have such individual attention. The whole process is pretty intensive: for the first two weeks I had to have hospital blood tests every day sometimes several tests a day.
’Throughout this time in fact throughout my illness, my company has been endlessly supportive. They’ve offered me flexible working conditions, working part of the time from home and always saying that I should take off whatever time I need. I could never do what I do if I had to be in an office five days a week. All I want is for my life to be normal, and work normalises life for me. You often hear the idea expressed at cancer self-help groups, that there must have been something wrong in your life that caused the cancer. That doesn’t add up for me: I really enjoy my life and I’m totally happy with it. I think I’ve showed my employers that work is important to me and they’ve responded because they know I’ll do the best I can. When I joined them in 1997 I had a much senior job in another organisation so, of course, at interview they asked why I wanted this lesser job. I explained that I wanted to step back a bit after breast cancer. Being honest and open from the start meant that my managers and colleagues could work with me and the health commitments I had. I am convinced that this has made a huge contribution to me staying so well.
’After six months on the angiogenesis trial my blood pressure started creeping up one of the known side effects. So they pulled me off it. A scan showed I’d had some great results, but nonetheless a new tumour was appearing. This was a terrible emotional blow, but after picking ourselves out of the black hole we looked for what next available treatments there were. Luckily I still had no symptoms and felt physically well. I then started on an oral chemotherapy programme with Xeloda it’s a fantastic drug not only because it’s in tablet form but because it specifically targets the tumour, so you don’t get the whole body side-effects of chemotherapy such as fatigue, hair loss, nausea etc.
’Going for one more RFA in May 2007, I was offered Sirtex Radio Active Bead treatment. It’s more
commonly used in bowel to liver cancer and is still fairly new in Australia as a treatment for breast to liver cancer. It’s delivered rather ike an angiogram they put a probe into your groin and feed radioactive beads to the targeted tumour site. So it’s like having a form of radiotherapy from the inside. They have to scan and map your liver carefully beforehand to ensure that they can access the right site and avoid any arteries. Again I was lucky to be a suitable candidate. It was just an overnight stay in hospital for monitoring purposes. With that behind us, six weeks later we had a wonderful 12 day trip to Paris with some dear friends. I’m still on the Xeloda treatment and they’ve found multiple spots on my liver, which is beginning to resemble the coat of a dalmatian dog. It could be that there is growth, but it’s quite hard to read what is a new problem and what a previously ablated spot. Two scans ago the tumours were increasing, but the last scan showed that they were on the decrease. So I’m just in that waiting stage again. I am working full time, helping Jeremy in the business and doing aqua-aerobics, pilates, meditation and yoga on a regular basis.
’I’m told it’s extraordinary that I look and feel so well and always have. Blood tests show that despite the tumour battering my liver, the liver function tests are still normal. Perhaps the complementary ’extras’ from carefully chosen practitioners with cancer experience have helped: I use a whole range of meditation cd’s and I learned some useful guided imagery visualisations at a local cancer centre in Purley, when we lived in the UK. I find taking myself off to a good place in my imagination lessens the stress of scans and blood tests. I’ve had a lot of reiki, and I think it’s a good healing aid if you believe in energy fields and chakras. I’m currently taking Vitamin C, fish oils, an anti-oxidant compound and have just started on a liquid mushroom extract from five different fungi. A naturopath with a lot of experience in cancer work suggested it as a good booster for the immune system. I also have reflexology for relaxation and because it can help release toxins from associated organs. I’ve looked into fairly extreme diet programmes, but they just didn’t work for me. I try to eat healthily; I’ve cut down a lot on meat and take more fruit and vegetables now, but I do have a weakness for sweet things. I’d be miserable without them altogether. You have to find what works for you. If ever I write a book of my experience I’m going to call it I’d rather have a chocolate biscuit. Altering my diet has probably been one of the biggest challenges a glass of champagne and some chocolate always sounds a good idea to me!
’What has helped most I don’t really know, but I have been very lucky with how my body copes following so many scans and treatments going into my body. I’ve managed to continue working, practically throughout and even with the very high-dose trial chemo, apart from the initial two weeks which involved intensive monitoring and testing, I had only four days of feeling knocked out in a three week cycle. I seem to have a capacity for bouncing back, but then I also have such great support.
’I remember asking a friend of my sister’s who has since passed away with liver cancer, how he coped and he was really helpful. He said You’ve got to keep one step ahead of science. As long as there is something they can try for you, that’s good. That’s so true and I never forget it. Every time you get bad results, it is devastating and every time it’s gut-wrenching enough to knock you off the perch. Instead of automatically assuming the worst, you have to hold off until you have all the information from the doctors and you know the whole picture and what the options are. Many a time we have been totally shattered with the news and very frightened to think there was no hope. But after seeing the doctors and talking about options, more doors have opened on to possibilities. i c o n is also an enlightening and uplifting resource that provides so much information in a single publication real people and real stories. It’s helped me source and explore different treatments such as photodynamic therapy, useful supplements and dietary changes that I might not otherwise have come across. Above all i c o n has enouraged me and given me hope of increased survival.
’When I’m bloated up on steroids and bald, I still have Jeremy to say ’You’re beautiful’ and he’s always there, getting to know the medical team as well as I do. Sometimes a partner can be left behind when the other is diagnosed, but the truth is that you really both get the disease. No one can underestimate the effect on you as a unit. So I recognise how special Jeremy really is. What the future holds I don’t know, but of course the one thing I want is to grow old with my husband. Statistically, I should have been dead three times over by now. I’ve had more than my nine lives. So I thank my lucky stars every day that I’m still alive and still feeling so well. After having been through what I have been through, I think everything around you becomes more precious which then heightens your awareness simple things like the grass seems greener, the sky bluer and the sunshine warmer. It doesn’t take much for me to appreciate the real pleasures of life like seeing the sun come up each day and being thankful for the wonderful people that surround me.. ’