In Eth Lloyd’s pursuit of health, a final obstacle proves a valuable tool for change…
The one thing we can say about life is that nothing ever stays the same and it certainly does not pay to become complacent as we just do not know what is around the corner.
In my last article in the “cancer pathway” series everything was good, decisions made and the risk of recurrence (that is secondary breast cancer) was very small as there was nothing in my lymph nodes. I had healed and was now just awaiting the completion of the reconstruction process to create a nipple and tattoo of that area to match the other side. I was feeling really well and my goals were all lined up and ready to go.
I was due for my six-month check-up with the breast cancer surgeon early September between my trip to Samoa and our trip to Europe. Mid-August I received a call from the Breast Specialist Nurse asking me to come in the next week. Charles dropped me at the hospital and was to come back later; we were only expecting good news.
I went into the appointment feeling very good and was stunned when I was told that due to a systems error the report changing my status from HER2- to HER2+ had not come through until just recently. I was told that while chemotherapy was now indicated in my case I was outside the optimum time for having it. It was suggested that I may have to change my travel plans in order to have this treatment, however I could go on my trip to Samoa as an appointment with the oncologist could not be arranged until after then.
Charles arrived just as the appointment was ending and I asked them to repeat it all to him as I realised I would burst into tears if I tried to. It was valuable to hear it all again and he of course had some extra questions which I hadn’t thought of. However we both left feeling as if we had been run over by a bus.
We had a great week with friends in Samoa and loved revisiting the places we had been to when we had lived there. We shared lovely evenings and had some on our own in a fale out by the beach – truly magical.
On our return we met the oncologist, Dr Leuy who was really understanding. He said – “Go away for five weeks; it isn’t going to make any material difference. But while you are away here are the facts so you can decide if you wish to have chemotherapy or not. Come and see me as soon as you get back.”
The facts were:
- That HER2+ cancer cells might have got into my blood stream. If they had they might settle and if they settled they might
- That there is no research data to say whether having chemotherapy seven months after surgery will make a difference to possible outcomes or not.
- That statistically I am only 10% likely to have a recurrence of breast cancer, that is, secondary cancer.
- If the chemotherapy did work it might make a 4% improvement meaning I would statistically have a 6% chance of recurrence.
- That as with everyone with breast cancer, if secondary tumours do occur then they are incurable.
After a lot of discussion with Charles, other trusted people and research on the internet I came to the conclusion that I did not want to have chemotherapy. However once I came to that conclusion I realised that by turning down treatment I was cutting myself adrift from conventional care. I had to develop a plan which needed to assure me I was doing everything I could to keep healthy.
A close family member who lives in Vancouver has been down her own breast cancer pathway though her statistics of recurrence were more the reverse of mine. She had chemotherapy at the right time which she credits with saving her life. However the chemotherapy also made her very ill.
She has worked on rebuilding her immunity and strength so that now, seven years past diagnosis, she is strong, fit and well – what a fantastic story. While she would never advise me what to do, she has provided me with a great deal of research to help in my decision making, a sounding board and information on what she has done to keep well.
NOTE: Every person’s cancer pathway is their own. You must gather information and then take account of your own situation; you cannot just do as someone else says. If you are going to step away from western medical support you must be sure what you are doing is right for you.
There were many things for me to consider:
- Why did I not want chemotherapy?
- What could I do to help myself?
- How would I feel if secondary tumours do appear?
- How would Charles and our children feel about all of this?
These were hard to answer but primarily I was not happy about chemotherapy. Whether that was sensible I will never know but it was how I felt, very strongly.
While I was in the UK I came across an article about Professor Mohammed Keshtgar, Consulting Breast Cancer Specialist from the London Royal Free Hospital. The article was about his book called The Breast Cancer Cookbook. I ordered this through Amazon and I think it may become my “bible”. He of course supports western medical treatments. However, he sets out what each individual can do to help themselves prevent cancer and support your body during and post cancer treatment, through diet, exercise and maintaining a good body weight. There is information about breast cancer and notes about foods which support your immune system and those that have some evidence (though not all fully researched yet) of fighting cancer, for example:
- Garlic, a healthy seasoning. Treatments for cancer have a profound effect on our natural immunity. Recent studies suggest that including garlic in our diets may provide a means of redressing this naturally. Further research is needed to verify this, but garlic is known to possess many other health benefits.
- Sage for hormonal balance. It is thought that sage’s phytochemical content may prevent the formation, block the action and/or suppress the development of cancer from carcinogens.
This book is valuable for its information and also for recreating interest in cooking with different recipes. It has regenerated interest in food shopping for me with new and different ingredients at a time when I was beginning to find cooking a bore, challenging and something I did not want to do. Food has not been interesting to me for some months and so the quality, except my smoothies, has fallen. I will still cook some of the foods I always have but I now have a wider variety.
Next is the use of supplements: vitamins, probiotics and the very controversial use of Vitamin C. Vitamin C has caused argument and angst within the medical fraternity and cancer patients. I am not in a position to advocate these approaches at all, I have very limited knowledge. What I plan to do is use these, if appropriate, as more tools in my tool kit to keep myself well with a strong immune system.
To manage all this I am building a team. My relative in Canada is one member. I will work by Skype with a naturopath also from Canada, using blood tests to provide core data and I will seek guidance on many aspects of my approach.
My own doctor will be part of my team. She will always be informed of the pathway I am taking and her opinion sought. She is the person to whom I will go if I have a concern about my health and her support is vital. She knows me well and will make her thoughts known if I get too far left of field – we all need someone like that in our team.
My breast surgeon will also be part of my team. I expect to see her within the next 6-8 weeks and will discuss my approach with her. She will oversee me for the five years I am on Tamoxifen and I will ensure she is kept informed.
Finally I will add someone to support me in an exercise regime. I am not good at the gym but I do know someone who has helped in the past, and I hope that she will do this again. Exercise is great but it is too easy to be too easy on yourself if there isn’t someone there to keep you striving.
NOTE: If you choose to step aside from the regular western medical approach to breast cancer treatment then you must have a plan and a support team. I can take this approach because my statistical recurrence risk is very low and I have huge support, but this will not apply to everyone.