I created this page and my blog (www.elenaedwards.com) soon after my cancer diagnosis, to share information about nutrition and natural non-toxic products to help the healing of a chronically ill body and prevent cancer. I believe that this information and this lifestyle have saved my life, after undergoing traditional medical cancer treatment.
In October 2016, I was diagnoised with Stage IV colorectal cancer, at age 42. I underwent chemotherapy, immediately after the diagnosis, and three surgeries. At the time of the diagnosis, I didnโt know much about cancer and cancer treatment. I knew that chemotherapy and surgery cure people of cancer, in some cases. My journey with cancer has never been plain sailing and now I wish to inspire cancer patients to learn about using nutrition as adjuvant therapy in cancer treatment.
I am currently in the middle of writing a book about using nutrition as adjuvant therapy in cancer treatment.
The book is called How to LIVE and extraordinary LIFE with CANCER.
Publishing date: 2019 date TBC
HERE IT IS, IN SHORT, MY STORY WITH CANCER SO FAR:
UPDATED JULY 2019
July 2016, I run some blood tests because I became concerned about my hair loss. The testsโ results showed anaemia (Haemoglobin was 108), Iron deficiency - thought to be related to my plant-based diet, low Zinc level, lack of Vit. D, and the CRP of 30. I was prescribed food supplements: Iron tablets, Zinc, and Vit. D. My condition didnโt improve and gradually I became unwell week after week, with abdominal pain, bloating and frequent bowel movements (10 a day). The Dr said that these abnormalities were the side effects of the iron tablets.
Prior to July 2016,
For about 5 years, I felt unwell with chronic fatigue and lower back pain to the point that I could not sit down. I had a fall on a staircase in my home that left me immobile for a couple of months, so all doctors assumed that the fall caused the pain. The X-rays didnโt show any abnormalities. No scans were offered for further investigation.
The chronic fatigue was associated with my adventurous lifestyle, full- time working activities in various businesses, and being a single parent. I also suffered from Hypothyroidism and the Hashimoto disease and it was assumed that the Hypothyroidism might be another cause for the tiredness.
In the absence of proper healthcare and diagnosis, I decided to change my diet to a plant-based diet in early 2013. I went on a journey to cure myself of Hypothyroidism and almost succeeded. I felt better but still things didnโt go back to what I thought it was normal. I kept losing large chunks of hair.
06 October 2016, I was seen by a Gastroenterologist in a Private Hospital, after a few visits to my family doctor and a trip to A&E with an extended abdomen (to the size of 6 months pregnancy) did not lead to a diagnosis. The family doctor associated the extended abdomen with a pre-menopausal symptom. When I was examined, the Gastroenterologist confirmed that there were no masses to feel, nor pinpoint tenderness. Re**al examination revealed no abnormalities. He recommended to investigate further why I was having 10 bowel movement a day, multiple nutritional deficiencies, and raised CRP level. The differentials included inflammatory bowel disease.
By that time, I lost my appetite and was eating very little. No other symptoms.
I insisted to have a gastroscopy and colonoscopy which he agreed to, within a weekโs time.
14 October 2016, the Colonoscopy revealed an impassable fungating tumour mass in the re**um. I was then referred to have a CT scan and to speak to a colorectal surgeon.
26 October 2016, I was diagnosed with Stage4 colorectal cancer. The CT scan showed the sigmoid tumour to be invading the re**um and back of the uterus and the cervix. There were also suspicions lesions in the liver which required imaging further with MRI. 2 lymph nodes looked inflamed and suspicious. Surgery was booked for the 07th of December 2016, to resect the tumour entirely by performing an en block dissection of the reproductive organs (total hysterectomy), the sigmoid colon, and part of the affected re**um. A temporary de-functioning ileostomy was planned, and I was warned about a permanent stoma. The liver MRI excluded liver metastases.
Final diagnosis: Large malignant mass of rectosigmoid origin which directly infiltrates cervix, vaginal fornix and laterally extends towards the pelvic sidewall. Suspicious local and sidewall lymph nodes. Stage T4bN2
07 December 2016, the lead surgeon had doubts about removing the tumour en block and cancelled the surgery. I insisted to see her on the day, and we discussed and arranged to still go in the Operating Theatre that day to do something, anything. At the time, I was on Morphine derivates (due to the strong abdominal pain), almost bedbound, and with a lack of appetite. She agreed to perform a diagnostic laparoscopy and a de-functioning colostomy.
Within 2 weeks, post colostomy, the lower back pain and the abdominal pain disappeared. My appetite reverted to normal.
Medically, the treatment prescribed was:
neoadjuvant Chemotherapy Oxaliplatin + Capecitabine 12 cycles
neoadjuvant Radiotherapy 6-week course of radical chemoradiation to try to shrink down the pelvic tumour further, and hopefully operate it in the future. I was warned of the side effects: vaginal stenosis, pelvic fractures, bowel dysfunction, infertility, and premature menopause.
surgery to remove the tumour mass, if the two therapies above worked
When the doctors said that they were not sure if the treatment would work, I decided to take the matter in my own hands and changed my kitchen into a proper โkitchen labโ. I read lots of materials about the right diet for a cancer patient and decided to follow all the recommendations I read online. I transformed my plant-based diet into an organic low carb wholefood alkaline diet overnight.
After 6 chemotherapy cycles, a CT scan was requested, and the scan showed that the tumour shrunk to nothing. The tumour deflated and all it was left of it was its skin, attached to all the organs and tissues mentioned above.
The Oncologist cancelled any further chemotherapy and radiotherapy indefinitely.
07 March 2017, I was admitted to hospital with septic shock, with a raised lactate (3.9) and possible neutropenia, induced by chemotherapy. I was administered IV antibiotics and fluid resuscitation. The treatment caused respiratory insufficiency and I was put on oxygen machines for a few days. I was discharged on the 11 March 2017. I struggled with my breathing and walking for 2 months after I left the hospital.
15 May 2017, I had the surgery to remove all the organs and the tissues to which the tumour was attached to, total hysterectomy - BSO plus anterior resection -two separate bowel segments which were attached by mesocolon. The segments measured 190mm and 80mm. The shortest specimen was proximal and on opening contained 15mm tumour which was present at the closed distal end. The distal long segment included the re**um. Within this segment, there was probably a tumour at the proximal closed end. Metastatic tumour was present within two of seventeen lymph nodes removed, with the apical node clear.
Stoma was reversed and the healthy part of the colon was re-connected to what was left of the re**um.
28 May 2017, the body became septic while I was still in hospital post-surgery, and I had to have another open abdomen surgery to remove blood clots that got infected in my pelvis, after the surgery on the 15h of May. I spend another 10 days in the Intensive post-surgery recovery unit where I was fed artificially and was bed bound for the first 7 days.
Post-surgery histology report confirmed: moderately differentiated adenocarcinoma of the sigmoid colon, Dukesโ stage C1, TNM 5 stage ypT2N1 (2/17).
05 September 2017 - CT scan confirmed no local recurrences or new distant metastases.
09 October 2017 โ genetic service results: immunochemistry MLH1, MSH2, MSH6, and PMS2 protein present in tumour samples but this did not support a diagnosis of the genetic condition called Lynch syndrome. In other words, my cancer was not passed on by my family. I created this disease.
28 March 2018 โ CT scan no local recurrences or new distant metastases.
12 June 2018 โ colonoscopy โ some mild erythema and likely granulation tissue at the anastomosis.
Follow up recommendation: CT scan once a year, and the CEA marker once every 6 months โ for 5 years
Towards the end of 2017, one of the patients that I kept in touch with while we were in the hospital called me to say that his liver was covered in tumours, after we were both given the ALL CLEAR, following a CT scan in September 2017. Within three months after he was given the ALL CLEAR, he developed metastasis to his liver and almost 90% of his liver was covered with tumours. Our Oncologist told him โsorry, there is nothing that I can do for you nowโ. This was my wakeup call that cancer was not just a tumour and I went back online to search for ways to see if I still had circulating cancerous cells left in my body. My local hospital didnโt pursue my research any further. They didnโt have the facilities or the protocols in place to carry out this kind of tests.
Through my own research, in June 2018, I managed to arrange an appointment to meet Prof. Dr John Ionescu at his private clinic Spezialklinik Neukirchen Germany, after watching a TV interview on social media where he was talking about the metabolic approach to cancer treatment, something that I had studied extensively since my diagnosis.
06 June 2018, I had the first tests carried out at Spezialklinik Neukirchen Germany. The elevated tumour markers TKTL1, Apo10, and M2-PK confirmed metastatic tumour cells metabolism in my body. Elevated TKTL1 values confirmed poor response of previous radical and apoptosis-inducing therapies. Other tests confirmed imbalances in vitD ratio, Omega6: Omega3 ratio, immune-suppressing viruses, heavy metals accumulation, etc.
Prof Dr John Ionescu suggested the administration of food supplements, heavy metal chelation therapies, and pro-oxidative protocols for a couple of months to recover my weak immune system, while simultaneously causing pro-oxidative stress on the tumour cells.
My energy levels shoot up within two weeks, after starting this protocol. I am a big travelling geek and I love to drive for leisure. I stopped driving at night many years ago because I was falling asleep while driving. Since starting this therapy, I have been able to drive again, day or night, without any tiredness spells.
12 December 2018, the tumour markers TKTL1 and Apo10 were coming down. M2-PK was still rising.
Other health markers improved, too. The protocol was changed to match the new blood testโ results.
The energy levels were still on the up. I didnโt think that I could have so much energy. I thought that the natural ageing process slows people down, after a certain age. This year, I am turning 45, and there is nothing that will slow me down. I feel like a little girl in a playground all day long.
20 February 2019, all three tumour markets TKTL1, Apo10, and M2-PK were coming down. The blood count formula looked great. My thyroid functions are gaining momentum. I have been on medication for hypothyroidism for 27 years. It was at Spezialklinik Neukirchen Germany that I did the first in-depth tests for my thyroid functions in my whole life.
My hair is growing healthy. I feel as if I am getting my life back. It was the hair loss that made me investigate what was wrong with me. Now, the hair growth is my โhealth markerโ.
UPDATES MAY 2019
March 2019, I was due o have my annual CT scan at my local hospital, to check for metastasis and local recurrences.Due to the fact that the cancer cell metabolism markers tested in Germany were still present, I requested my local hospital to do a PET scan because you cannot see small tumors on a CT scan. I told them about the tests I did in Germany. They told me that a PET scan is not part of the NHS protocol in cancer treatment follow up. Why not? PET-CT is the most in-depth testing technology in cancer diagnosis. I offered to pay for it. They declined my request and went along with the CT scan anyway. I wanted to go privately but you cannot do a PET scan anywhere, without a referral from a NHS Dr - catch 22! The CT scan results came positive as in no metastasis and no recurrences so they wrote to me to say that weโll meet again in 2020.
I told them that something is not right. In Germany I was told that I had cancer and in the UK I am told that I donโt have cancer. I requested the full CT scan report from the radiology, which they provided. I read through it and noticed something new, not seen on previous scan - some nodes on my lungs. I requested another Dr to read the scans to make sure there are no abnormalities and insisted on a PET scan which was declined again.
The second CT scan interpretation confirmed abnormal tissue in the pelvic area. Instead of booking a PET scan, they went for a MRI. Why? I have no idea. An MRI scan is not a diagnosis scan in cancer. The MRI scan confirmed the tissue in the pelvis. I insisted on the PET scan and if declined again I was going to go privately, eve n if I had to pay for it but I asked the hospital to confirm in writing why they refused the PET scan and to give me a referral to go privately. At this point they agreed to d the PET scan.
2 weeks later, I had a meeting with the lead surgeon who oversees my care. She didnโt have the PET scan results with her and no pictures, so we met to talk about nothing. I left the Drโs office under the promise that she would send the details in the post to me. I decided to ask for my records from the hospital where I did the PET scan and I went to pick them up, before my Dr sent anything to me. What a shamble of a system and what a waste of our tax money. She only sent the radiology report. No pictures. Luckily I requested the files myself so I can see where the tumors are.
She agreed to refer me to a more specialist hospital, months later after I requested a second opinion. I now feel that her Ego is far higher than my healthcare. Why she refused all these tests and referrals I have no idea.
The fight continues. Next stop -> Germany, to continue with my tests and treatment.
Update 29/07/2019 see pictures attached to the FB post dated 29/07/2019
Back to my desk, after almost 6 weeks break.
What did I do all this time?
I am still asking questions about my healthcare in the UK. I am still awaiting answers - 4 months on!!
I went back to the private clinic in Germany to re-take all the tests, following the PET/CT scan in the UK.
This was because no course of treatment/action was taken in the UK, following the scans.
I began a new protocol treatment in Germany that will last until the end of August when I will do a new PET/CT scan.
Here it is the latest update to my case that I will attach to my page story:
UK March 2019 - scheduled routine CT yearly scan
I received the results that confirmed no metastasis and no recurrences - copy attached.
I questioned this scan and requested a second reading because this result didn't match the diagnosis in Germany that confirmed that I still had cancer.
Following my request, a second radiologist spots one tumour.
I requested a PET/CT scan which was rejected on a few occasions, despite the fact that I offered to pay for it.
Finally, after intense pressure from my part, the PET/CT scan was scheduled on the 30th of May, almost 2 months since the previous scan was wrongly interpreted.
The PET/CT scan confirmed two new tumours.
I arranged to see a member of my care team to discuss the PET/CT scan results. The consultant was my surgeon who didn't have the pictures or the radiology report on the day so nobody could explain to me what these tumours were.
I requested a referral to the Royal Marsden Hospital in London. The request was declined, and I was referred to Basingstoke to meet a team of world-renown surgeons in pelvic surgery.
The world-renown team said that my case was not something that they could help with and they advised being referred to Southhampton Hospital or St Mark's in London.
I chose to be referred to St Mark's in London because they are a specialist hospital for bowels diseases.
I have now received an appointment to see a consultant at St Mark's Hospital in London on the 16th of August 2019.
I will keep you updated on the evolution of my treatment and my wellbeing, as soon as I have more information.
But for now, I am back to my desk, and back to writing, while I can.
Not all days are good days, and some days I have no desire to write anything.
If you need any info from me, please feel free to get in touch with me and don't just wait for the book.
Any information can save someone's life.
Your DNA is not your destiny - this is what it says on my screen right now.
If you know of anyone diagnosed with cancer, ask them to question everything and ask them to double-check all the information.
Human errors during diagnosis are possible like it happened in my case constantly over the past three years.
A health system might not have all the solutions for you, like in my case.
A doctor that you trusted your life with might tell you that he/she doesn't know what to do. You cannot afford to receive this kind of information.
You want someone to save your life, right?
Then, learn from me that it is your job to save your life. Nobody loses sleep over your life.
It is so easy for a Dr or Nurse to say "Sorry, there is nothing more we can do". How would you feel, if you heard this sentence?!
What if you could use all this time to ask questions and ask more doctors for opinions!
Keep your options open all the time.
My experience with the metabolic approach to cancer treatment undergone at Spezialklinik Neukirchen Germany is mind-blowing. You can read many articles online or books about how to fight with this disease, but you are limited on what you can achieve at home on your own.
I strongly believe that in-depth testing is key in learning how to heal a chronically ill body. Without knowing why the body developed a certain disease, how are you going to approach any treatment?
Cancer is not just a tumour. Cancer is a systematic metabolic, environmental, and emotional disease. The surgery will remove a tumour. Radiotherapy is a highly toxic intervention at the tumour site. Chemotherapy cannot be prescribed for many years, without killing the body. What are you going to do with the tumour cells after the chemotherapy was stopped? How are you going to eliminate the chemotherapy toxicity out of an already toxic body? These are just two questions that Iโve asked my Oncologist. I havenโt received an answer yet.
All the recipes that I am creating are made:
with organic plant-based ingredients
with wholefoods
with low carbs ingredients
with ketogenic foods
in my kitchen
with love for the cancer patients, people who suffer from chronic diseases, Type2 diabetes, and for you the reader, so that everyone can Live an Extraordinary Life
Love,
Elena
You can watch my latest TED TALK style talk here https://youtu.be/yRw9YYfHGGc
