Friday, 2 October 2015

Regaining Control - My Breast Cancer Journey

Today’s post is from one of our beneficiaries who kindly agreed to share her story. Laurence, 53, from South East London underwent extensive treatment after being diagnosed with breast cancer in 2014. Whilst suffering gruelling side effects, she began to explore other options that could support her recovery.

I was diagnosed with breast cancer in October 2014. I had noticed a thickening of the skin in my breast, but no lump as such just a change of texture. I had been having yearly mammograms for the past 20 years due to family history but they had always been clear. Both my mum and her sister had breast cancer and their mother, my grandmother, died of colon cancer aged 54.

My GP referred me for tests immediately. At the hospital, I noted that I was being processed completely differently. Previously when I was given a mammogram, I would be sent home and told to wait for a letter. On this day, I had a mammogram, a scan and four biopsies, followed by a meeting with the consultant and breast cancer nurse who invited me to the Macmillan unit the following week to talk about the results. It was obvious there was something wrong.

The following week, the diagnosis was revealed; grade 2 invasive ductal carcinoma. I was offered a local excision and dual technique sentinel node biopsy followed by radiotherapy.

I underwent a range of further tests, scans and radioactive injections all of which were invasive and scary. The outcomes were encouraging and I felt I was in good hands, in a good hospital with modern diagnostic tools and all this was carefully co-ordinated by the breast cancer nurses.

I carefully considered the consultant’s proposals, sought advice from the Macmillan nurses, had a good look at the websites aiming to support decision making, considered my options and asked for a second meeting.

I expressed my preference for a total mastectomy in order to try and avoid radiotherapy or the potential to have to undergo two operations. This is what happened to my mum. She had a lumpectomy followed by radiotherapy, only to be told soon afterwards that she needed a mastectomy. I was offered reconstruction but declined as I did not want silicone in my body. Also, I could not cope with the thought of having yearly mammograms on a breast that had been operated on.

I found the consultants and nurses supportive, caring, clearly hugely experienced, and felt that we made the right decision, with a full understanding of the facts. I had a mastectomy in November 2014. The operation went well and the surgeon was able to remove the tumour. Two lymph nodes were removed and tested. The cancer had not spread. This was wonderful news and I felt very grateful for their timely intervention.

The pain following surgery was indescribable. I had substantial swelling and a haematoma which took several months to resolve. There was substantial accumulation of fluid around the wound, which was incredibly distressing.

I was then prescribed Letrozole for two years followed by Tamoxifen for three years, the cancer being oestrogen receptor positive. I had an immediate adverse reaction to Letrozole. Very scary indeed with a swollen, dry tongue with red spots and terrible stomach pains. I was then prescribed Anastrozole which I took for some weeks and seem to tolerate well. 

Then I started to feel depressed, with loss of appetite, nausea and complete dehydration even though I was drinking several litres of water a day. I lost 9 kg in 3 weeks. I was prescribed yet another drug of the same family but decided that enough was enough. It was clear to me that the drugs were damaging me and preventing my recovery.  I wanted to find out more about the risks associated with taking the drugs but received no information from the hospital.

It is fair to say that I was very confused for some weeks, not knowing where to turn. I was scared because I could not eat, I had no saliva, and food was getting stuck in my throat. I looked like a skeleton, someone with anorexia. I became very anxious, mainly in the evening with fear making my throat tight and my heart beat erratically.  Friends and family, and my GP were recommending I try the new drugs; my naturopath friend was warning me of the dangers and recommending other solutions.

One day, I went to my dentist and arrived in floods of tears – this was the effect the drugs were having on me. My dentist recommended I seek a second opinion from one of his friends, a senior oncology surgeon. This was the start of regaining control of my life, which had been completely lost in previous months.

The second opinion was valuable as it provided some statistics on my risk of re-occurrence, and I was recommended to see another expert who commissioned an Oncotype DX test to better understand the histology of the tumour. I felt I was getting somewhere at last, and working towards a solution which would not be generic, but tailored to my needs. 

The histology of the tumour provided some useful statistics, which showed that my risk of re-occurrence was less than previously understood, and that the drugs would only reduce it marginally over 10 years. Benenden helped me with funding to seek this second opinion which provided a turning point in helping me make difficult decisions about my treatment. I decided not to take any further conventional drugs until I had got back to a normal weight and had regained some strength.

Following surgery and to support my recovery, I had tried massage, reflexology and acupuncture, all of which I had previously benefited from but the treatments just made me feel even more exhausted and I remained in a downward spiral.

Then I discovered Yes to Life, who offered to help with a range of other alternative approaches and started on some different therapies.

This was substantially funded by Yes to Life which was a massive help as I had to leave my job. I was too exhausted to work and needed to focus on my recovery.  My husband and I also attended a wonderful cookery workshop organised by Yes to Life which we found useful and enjoyed very much.

Yes to Life provided the tools to help me regain control of my life, and to help find treatments which were adapted to me, not generic. It is clear to me now that NHS doctors follow standard protocols, these are the same all over the world, and the endocrine treatments prescribed are based on clinical trials funded by the very pharmaceutical companies selling the drugs.

The NICE guidelines are confusing and difficult to interpret, for example, they compare 2 drugs in relation to the increased risk of fracture. This was not what I wanted to know. Having a scientific background, I wanted to see baselines, statistics, and comparative studies, understand the risk of re-occurrence over time for me, with and without the drugs.

Yes to Life and organisations that help people in this way are led by incredibly courageous people, with an intelligent and inquisitive approach to tackling the challenges posed by cancer. They are not afraid to stick their head above the parapet and suggest other solutions.  For example, it was recommended that I have a complete hormone test, which I thought was eminently sensible considering my cancer was oestrogen receptor positive.

The results showed that I had virtually nothing left in terms of oestrogen, progesterone, DHEA, testosterone etc. This clearly showed that there was no point whatsoever in my taking harmful drugs to reduce oestrogen levels. Instead, a range of supplements were prescribed to promote more effective methylation by the liver and digestive system, and to create a hostile environment for cancer, through other supplements and diet.

There are many charlatans out there, preying on people made vulnerable and desperate by cancer.  But Yes to Life helped me find competent and qualified people who could help me. I am still not out of the woods and only time will tell whether I will make it, but have found the advice and support invaluable at this challenging time.

Yes to Life has proved itself to be a caring, well informed organisation. For me, it has been a lifeline at a very confusing and scary time.

Yes To Life has also been able to give me some financial support towards lymphatic drainage massage which has helped with lymphoedema and osteopathic treatment as the mastectomy affected my posture.

This has been a massive help as I had to leave my job following surgery. I really thought I would be able to go back, and indeed, many of my friends who have had surgery and treatment are back at work and doing OK.  I did try to go back to work, perhaps too soon, and just did not have the energy... This has come as an enormous shock to me. I have always been a professional person, doing interesting, well paid jobs, and suddenly, I just could not work. I did not have the stamina or strength. Yes to Life’s support has enabled me to access these treatments without worrying about their costs.

I am truly grateful to all the people who have helped me and stuck with me through what has been a life changing experience. I have gone from being a fit and healthy individual with substantial energy, a demanding job, many activities including regular martial arts training for over 30 years, to someone who get completely exhausted after a couple of hours of doing something not particularly demanding.

My husband, family, friends, work colleagues, the hospital team, the oncology experts and surgeon, my dentist, have all been wonderful and continue to be.

Yes to Life has provided something else; a guide to important lifestyle changes and a path towards recovering my health and well-being, as opposed to just being cancer free.

With awareness rising and demand for our services at an all-time high we need your backing more than ever.  

Donate today and help us support more people like Laurence

2 comments:

  1. I met Laurence for the first time at camexpo 2015. What a pleasure to meet someone we have been supporting - an amazing lady.

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    Replies
    1. Thank you Sue, it was an absolute pleasure to meet you and Claire. Thank you for all your help and support. I am truly very grateful. Best wishes,

      Laurence

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