When active treatment was complete, I felt de-railed and abandoned after the tight regime and monitoring of chemotherapy. It was like feeling around in a dark room for something familiar to grab hold of. This was the inertia period. The aftershock recovery took as long as the treatment. I felt displaced about where I belonged for reporting any health concerns: am I still a cancer patient or do I see my GP? In full acknowledgement of my risks and anxieties, I agreed a 2 week rule with my GP for reporting concerns. If I develop anything which I am concerned about (general aches and pains) I agreed to observe for 2 weeks to see whether it goes away, gets worse or stays the same before consulting my GP. I found having this rule helped me to manage my self confidence with trusting my body again after it had let me down so badly. I also accepted complimentary therapy sessions and clinical psychology to help me to relax and manage my thoughts and anxieties. I strongly recommend this. Having cancer is like having a stalker. It appeared from nowhere, tried to kill you for no apparent reason and you're afraid that it's still out there waiting for you to drop your guard. Paranoia is the new fragrance, utterly seductive with delicate hints of over-reacting.
It is a sad truth that we have found ourselves here in the world of breast cancer and one of the hardest things to cope with is not knowing what caused it because if you don't know what caused it you don't know if you can prevent it from coming back. I don't feel I did anything wrong in any self-loathing fashion but I feel that I may have a sensitivity which needs to be addressed: OESTROGEN (or ESTROGEN if you're from the USA!). This news article from the NHS attempts to give some pointers but states "the body of evidence about proven methods of reducing risk is relatively small". I'm not taking any chances so I've made adjustments based on the latest research which I've trawled the internet for.
I overhauled my life from the nine steps in the Radical Remission book by Dr Kelly A Turner and strongly recommend this. It's important that you decide what changes you want to make and be satisfied that you have done enough and then get on with living again. A new report launched from World Cancer Research Fund (WCRF) confirms this research: breast-cancer-report-2017 and here is their advice for breast cancer survivors. There are a number of health tools on their website which you can use to do a self-assessment: https://www.wcrf-uk.org/uk/here-help/health-tools
I decided to maintain a positive outlook despite being told I was high risk for recurrence. I realised early on this outlook improved my quality of life every day whereas being negative did nothing to improve my health or quality of life. Don't get me wrong, I still had dark thoughts and meltdowns at times but didn't stay there for too long. I decided choosing hope (whether real or false) was psychologically better for me than choosing no hope. No hope felt like giving in and I didn't want to give in. I focused on all the things I was grateful for in my life and the things I wanted to do in my long retirement. I then went about doing those things now instead of putting them off to some ideal time. For me this was about making time for art and creativity and making a space in the house for this to happen; rather than shutting off that side of me I chose to allow it now. I tried meditation but that didn't work for me, however, I found guided meditation and active meditation did. I use 'guided imagery meditation' to relax and Maya Fiennes "Kundalini Yoga to detox and de-stress" DVD. These workouts were particularly helpful after breast surgery healing (both mentally and physically). This DVD continues to be my Sunday morning ritual where I have quiet time to reconnect with my body and work on staying supple. Something I started during chemotherapy which I have continued is regular Epsom salt baths with added aromatherapy oils. I find this very relaxing and helps with aches and pains from cancer treatments. If none of that works you may need one of these: Click Here
I realised the importance of getting closer to nature for relaxation and continue to keep this a priority, going for regular country walks and observing nature through photography. I've built exercise into my daily routine by taking the bus to work and this forces me to walk more. If you have to take the car to work you can always park further away from the building to push yourself to walk more. I've moved away from chemicals more and continue to replace household products with natural products. I have a sports bottle with a carbon filter so I can have filtered water wherever I go.
I joined a clinical trial and the good thing about clinical trials is the extra monitoring you receive as well as putting something back into the breast cancer movement for the future. You need to start thinking about clinical trials before you finish treatment and can discuss this with your oncologist. If there are no suitable clinical trials available at your hospital you can search for one elsewhere but will need to be referred to it from your oncologist.
Here is where you can find clinical trials available:
|A year after chemo with new curly hair|
or here: (USA drug companies run some trials in Europe)
Here is a list of re-purposed drugs being trialled:
I read a great deal on nutrition as I feel looking after my healthy cells is very important for swinging the balance in my favour. I stopped eating dairy products and alcohol since diagnosis and continue to do so. This was a very personal choice which does not suit everyone (my decision to ditch dairy was based on the research I've read on Hormones and IGF-1 and IGF-I&II which dairy contains). This article suggests there may be a reduced risk for ER+ pre-menopausal women consuming dairy but I would like to hypothesise this may be due to the protective effects of Tamoxifen on IGF1 rather than the dairy itself. IGF1 being blocked by Tamoxifen and Metformin is also pointed out by Jane McLelland in her Metro Map, How to Starve Cancer. I substitute with my favourite plant based milks which are oat, soya and hazelnut. There are excellent vegan alternatives available now so there has never been a better time to avoid dairy and still enjoy the same food experience. I don't eat meat but occasionally fish and eggs, though less and less as time goes on. (I make "scrambled [v]egg" from silken tofu and add a bit of turmeric, nutritional yeast, black pepper and olive oil and heat gently in a pan). I eat wholegrain foods and avoid processed and refined foods as much as possible (white flour, white sugar). I have increased my fruit and vegetable intake, in particular raw. I avoid eating large meals late on and usually eat lighter vegetable based meals if I go out in the evening. I drink Dandelion Root Tea daily first thing in the morning and also Green Tea, daily (3 strong cups). I try to incorporate only natural sugars (especially stevia) which are compatible with a diabetic diet as these release glucose much more slowly (Low GI), which is generally more healthy for anyone than refined sugars (although many manufacturers like to put sugar in everything). I am not perfect but aim to be 90% good with my diet (someone asked what my 10% bad includes and it's generally white flour, potato and products containing sugar, which is hard to avoid, although I think I'm actually doing better than 90% good most of the time!). There are so many do's and don'ts out there, I think its possible for people to develop an eating disorder after cancer treatment. I use the following mobile phone app (Dr. Greger's Daily Dozen challenge) to keep track of my daily healthy eating habits - its a simple checklist to remind me to keep eating all of the good things every day: https://nutritionfacts.org/daily-dozen-challenge/
I take supplements and I've shared below what I take as I know we all read similar articles and it's good know what each other is doing. I introduced supplements gradually, roughly one per week, to ensure I could test any reactions to the latest one before introducing another. I realise the number of supplements seems quite excessive but I also realise that cancer uses multiple pathways to grow so my aim is to thwart as many as possible so that any remaining cancer cells will give up and die as they have the wrong environment in which to grow. Tamoxifen may give me some protection but nowhere near 100%. Bear in mind that I had a partial response to chemotherapy and significant local lymph node involvement with a high risk of recurrence. If your risks are low then you may not feel the need to take so many supplements. We all face different challenges. I recommend you search for yourself on any of these 'supplements + breast cancer' - the research is out there and guess what?! .......... positive research now can take at least 10 years to be proven for NHS standards (if at all, sadly research doesn't always get the recognition or funding it deserves). I've read so many research papers which end something like this: "..... blah shows positive promise as an anti-tumour agent and further research is recommended" .....so, what do you do in the meantime? .....and guess what else?!........ with diet/nutrition/lifestyle there are also too many factors at work to try and measure everything individually, with certainty (a.k.a. Chaos Theory) ......hands up; who is going to eat only broccoli and pineapple for a year so the impact can be measured? ......but wait a minute, broccoli and pineapple are not poisonous and don't need clinical trials, we can eat them freely right now! ....... as long as it doesn't interfere with Tamoxifen (Tamoxifen and Aromatase Inhibitors are metabolised by the CYP system so I avoid anything which interferes with CYP metabolism, which includes grapefruit) and as it makes me feel I'm taking back control of my health; psychologically this feels good.
I organise my supplements into pill boxes at the weekend, one for morning and one for afternoon so I don't have to think about them too much (I bought the biggest pill organiser I could find). There is no way I would open each packet reliably every day. I intend to take these supplements for my first two years after finishing treatment as this is my highest risk period. After 2 years I plan to review them. I've highlighted in red/bold the supplements which I take with me on holidays as my minimum. Some people frown upon taking supplements yet would have no issue with unhealthy junk food, or alcohol which is classified as carcinogenic by WHO and WCRF. If certain foods and alcohol are detrimental to my health then I no longer view them as a pleasure anyway in the same way a diabetic wouldn't regard consuming sugar to be good idea. There are excellent alcohol-free alternatives and I regularly drink alcohol-free red wine; 'Rawson's Retreat' Cabernet Sauvignon is my favourite, it's nice and dry and should be naturally rich in polyphenols and resveratrol.
I take daily low dose gastro-resistant aspirin (75mg) to counteract the thrombosis risk of Tamoxifen and also Clarityn Loratadine (10mg) anti-histamine to counteract the aches and pains from Tamoxifen. Loratadine is also being researched for anti-metastatic properties in breast cancer. (Always ask your consultant before taking any additional medication and double check interaction information here: https://bnf.nice.org.uk/interaction/ or here: https://www.drugs.com/)
Immune support, amino acids and antioxidant supplements:
(Always check with your consultant before taking supplements and only buy from well known reputable brands --your consultant may be interested but unable to advise so you may have to make your own decision). If you read any published papers, remember "in vitro" means; its been tested in a petri dish (cell cultures) so bio-availability through the digestive system can be lost. "In vivo" means it has been tested on animal/human models so more likely to be promising research. I buy vegan supplements. Most are available on Amazon:
- Vitamins/minerals: D3, K2, magnesium citrate, B complex (I buy B complex with Folate instead of folic acid as there have been concerns about folic acid and breast cancer. B12 is very important, especially if you've given up eating meat. Niacin (B3) doses above 50mg can cause facial flushing --trust me, I've tried this and broke out in a rash to my face, neck, knees and wrists which lasted about an hour. Its harmless and can be reduced by having a large glass of cold water and gets better with prolonged use of Niacin according to this article. I take Niacin in a B Complex in the morning and take a separate supplement of Niacin in the afternoon which keeps each dose below the reaction limits.)
- Astaxanthin 7mg - I buy from Time Health
- Beta glucan & polysaccarides (from mushroom extracts - I buy from Time Health) there is also research that Beta glucans may reduce Tamoxifen resistance. Brewer's yeast also contains beta glucan and chitin.
- AHCC/alpha glucan 600mg (from mushroom extracts) - I buy from Time Health
- Alpha-Lipoic Acid (300mg)
- MSM (Methylsulphonylmethane) (500mg) (I take this supplement in the morning as it may interfere with sleep)
- L-Lysine powder (1/2 teaspoon) once a day (L-Lysine Hydrochloride). After almost choking several times on my enormous L-Lysine tablets I've now switched to the powder form to add to drinks. I've done lots of research on this amino acid and it's truly wonderful. It can reduce herpes attacks, can help with calcium absorption, reduce cholestrol and more: see here and here I buy from Health Leads
- Acidophilus Complex probiotics (includes L-acidophilus, L-rhamnosus and L-casei)
- Quercetin (1/4 tsp), Amla (1/2 tsp), Bergamot (1/2 tsp) powder added to soya or oat milk drinks. Bergamot is from the same family as grapefruit so I'm cautious with quantity due to intereference with CYP metabolism and don't have bergamot every day.
- Ursolic Acid as Holy Basil supplements (800mg)
- Seleno Excell
Anti inflammatory supplements:
- Boswellia serrata (800mg twice a day)
- Feverfew (1000mg) (Parthenolide active ingredient in Tanacetum parthenium)
- Bromelain (500mg) (Bromelain can have a blood thinning effect, like Aspirin so I take Aspirin at breakfast and Bromelain in the evening to space them out)
- CBD oil may have anti-cancer properties, on the ID-1 gene expression (at least: more research here. It may also be therapeutic for inhibiting inflammatory cytokines and NF-kB signalling events.... and definitely reduces anxiety for me. It is not a psychoactive (that's the illegal THC part). I take 2-3 drops twice a day (I buy from here: 1000mg strength, which lasts me about 3 months), at least 2 hours after Tamoxifen to avoid any interaction in the liver. I put the drops onto small tabs which I make by cutting rice paper into squares and place this between the gum and cheek for slow release. If you buy CBD oil read the details and ensure it is full spectrum & 100% cannabis oil and specifies the CBD % content (some claim to be high strength but are mixed with other oils. Lab reports should be available to verify quality),
- Black cumin seed oil (Nigella Sativa) (1/2 tsp)
- Sea Buckthorn oil (contains omega-3,7,9, tocopherols & tocotrienols and squalene) Amaranth oil also contains squalene. I take 3 drops or 1/4 - 1/2 tsp once a day. Biopurus and Fushi have a fantastic selection of oils.
- Turmeric and Black Pepper: I use standard turmeric in cooking but I don't take any high strength curcumin supplements as I read these may interfere with Tamoxifen,
- Piper longum and Piperine (added to food)
- Berberine 500mg for stabilising blood sugar (I was taking this 3 times a day but since starting the COC protocol , approx one year post-treatment, I only take once a day) see also: Tamoxifen and Berberine. Caprylic [Octanoic] Acid supplements may increase the bioavailability and have anti cancer properties in vitro. Caprylic acid is an extract from the coconut.
- Ginger Extract 12000mg (see also Shogaols) I buy Peak Supps
- Panax Ginseng
- Glucosamine Sulphate 1000mg for joint pain (but not with Chondroitin Sulphate) See also here for research on Glucosamine Sulphate v Glucosamine Hydrochloride I buy from Hellenia
I take 5-HTP or herbal melatonin at bedtime to improve sleep quality.
I buy my melatonin here
(valerian *may* not be taken with anti-oestrogen medications, however, this research is being challenged)
On the COC Protocol I take:
Mebendazole 100mg (3 months on, one month off to keep liver/bilirubin level normal)
More information on natural supplements can be found here or here.
I check for known herbal interaction updates here:
My big "GoTo" references are: Jane McLelland "How to Starve Cancer" for mapping metabolism and Dr Kristi Funk "Breasts - The Owners Manual" for general breast health.
I also keep an eye on research updates from the following websites: Nutritionfacts.org and foodforbreastcancer.com and Canceractive.com
I like to keep up-to-date on the latest breast cancer research projects here: http://breastcancernow.org/breast-cancer-research
Returning to work
The BCC BECCA app was really helpful after I'd finished treatment as I felt the need for continued reassurance and connection to the community whilst pursuing a "normal" life again:
Here are two articles from Marie Ennis-O'Connor giving good insight into returning to work after treatment and I made a small contribution to the content of part 1:
I have general health check ups with my GP, including a fasting blood test for glucose and cholesterol levels - I've read it's important to keep these levels down (as well as Body Mass Index (BMI)) to reduce recurrence risk, as always, more research is needed before it becomes fully recognised. It's also important to check your breasts regularly and this app: Breast Check Now helps you and allows you to set alarm reminders or, alternatively this website allows you to set text reminders: https://coppafeel.org/remind-me/
I feel well and full of energy. I have hair again and eyelashes and eyebrows. My life has changed for the better in many ways.
I found the BCC 'moving forward' information useful:
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Disclaimer: I am not a medical professional. I do not claim that anything which worked for me would work the same for you. This blog is no substitute for the advice of your doctor. Always seek medical advice if you have any concerns. Always check with your consultant before taking any supplements. This blog is my personal journey and a journal of how I coped. I do not take any financial incentives from any products mentioned.