Cancer-free. I fought and I conquered. You would think there’s an immediate feeling of elation at that moment but it’s not quite as simple as that. It’s so difficult to explain. Relief is the first emotion but everything else takes time to conceive. The best way I think I could describe it is that it’s like I’d been holding my breath for months and suddenly I could let go but I couldn’t do it all at once. I had to gradually release every bit of anxiety I had been storing and take time to process the whole journey. Having internalised quite a lot of my fears I couldn’t just turn them off in an instant. Added to that is the feeling of going it alone after months of regular appointments which marked the next step towards my goal of being free of cancer. Rather than being an annoyance, for me the appointments really helped me to break down the campaign by knowing what was happening next and ticking a box once I’d gone past that consultation or procedure towards another, in the hope that each one took me closer to putting it all behind me. Don’t get me wrong, each hospital visit, whatever it might be, invoked some level of nervousness and anxiety but each and every one was necessary and had to be faced so I counted each one as another step of progress.
I was wondering if I was being a bit silly for feeling like this until I bumped into a friend who has had her own cancer journey. We talked about where I was at that point and, before I could say it, she said the worst thing is when there are no more appointments and you feel like you’re now on your own. It was such a comfort to know that this appeared to be a ‘normal’ feeling in my circumstances. I have since spoken to other cancer survivors who have voiced exactly the same thing. Good. I could work my way through this without feeling ridiculous about it.
I also had the knowledge that I would be on the radar for a minimum of five years, the duration of the Tamoxifen, and annual mammogram screenings for the same period of time. In a weird way that actually put me at an advantage to many other women as the normal time between screenings from age 50 is three years. It felt like the safest place I could be at this time.
There is a positive side in everything. It just takes a positive mind to see it.
My next challenge was to try to get back to the life I had before my diagnosis. It would be unrealistic to think that everything would be the same. Life will never be quite the same for me again. I had been through a frightening and painful process and will always have an elevated level of fear to before. With my mum’s history I had always been prepared that I might one day face cancer but it hadn’t been an overwhelming feeling, more of a realistic possibility. Having that expectation realised, I now had to consider that I was vulnerable and susceptible to the cancer returning one day, as it did for my poor mum. I don’t want to live the rest of my life consciously worrying and thinking “what if….?” but it’s natural to worry. I will always be vigilant about any concerns regarding my health and of course if anything doesn’t feel right I will be apprehensive.
When I have a really bad day I find myself thinking “my mum only had nine years left when she was my age” or I hear about other unfortunate people who have had secondary cancer which can’t be cured. I am generally a very positive and optimistic person but I just have my days. It’s also still very raw for me so hopefully in time I’ll think less and less in that way. Cancer is an evil disease that destroys lives and it is hard to be completely free of the fear.
Coincidentally, just after I wrote that last paragraph a ‘fellow survivor’ shared a blog which totally summed it up! It says exactly what many of us feel post-cancer. It’s called ‘Don’t Ask Me to “Get Over” my History with Breast Cancer (In our minds, it’s never completely over)’, written by Dr Uzma Yunus and published by HuffPost.com.
This is just a few sections of that post:
“If you have ever wondered why cancer survivors bond with each other or connect instantaneously, it is because we “get” each other. We are able to relate to each other in ways others can’t. One of the biggest emotional setbacks that breast cancer survivors deal with post treatment is the expectation from their family, friends and caregivers that survivors should “get over it” and join life in its entirety.
In fact, the survivor-ship phase, which starts after all treatments end, is actually a very daunting and nerve wrecking time. Through cancer, we get used to regular appointments and medical oversight. But then when treatments end and the oncologist looks at you and says, “You are done. Go live your life,” most survivors feel lost. After six months to a year of intense treatments, we forget what it is like to “live life.” And just like that, with a statement and a pat on the back, survivors are pushed back into the world that is no longer recognizable to them. Many have mixed feelings about the word “survivor” since they are unsure if they truly have.
“Cancer changes everything” is an understatement. Those with cancer are no longer the same people when it hit them. We took an exit off of the freeway and then got lost for a long time on unfinished roads and unfamiliar streets. It’s hard to merge back into the fast lane. It scares us to see everyone moving so fast and, sure, while we feel we are just limping along.
Dealing with cancer is grief and loss at multiple emotional levels. Even though, after the end of treatment, survivors are told they are cancer-free, we are anything but “free” of cancer and cancer thoughts. We are ridden with feelings of anxiety and uncertainty and stalked permanently by the fear of cancer. Many of us hardly get restful sleep at night. I remember how fractured my sleep was on Tamoxifen and how my joints hurt every single day. Women after breast cancer are on 5 or 10 years of hormonal treatment and live quietly with these side effects. They don’t say much because they feel that their life was spared so they should pretend to be happy and just suck it up.”
As well as the emotional fallout of what I’d been through, I now had menopause symptoms to contend with and this hit me like a brick. I’ve suffered from insomnia for years which started with my grief when my mum died but, from time to time, improved. However, peri-menopause reared it’s ugly head and I haven’t slept well for a few years now. In terms of my mood and general mental health, like most women experiencing the drastic changes in hormones, it was a struggle. The ‘brain fog’ is incredibly frustrating and sometimes you wonder if you’re heading towards dementia. ‘Overthinking’ everything and being irrational is another aspect and one that you know is usually ridiculous but you still do it. I sometimes feel very panicky or irritable for no apparent reason, like a loss of control. It happens suddenly and randomly and is both a physical and psychological experience. Unless you’re one of the few lucky women who sail through, barely noticing these changes, it can feel like a sense of ‘impending doom’, like a black cloud hovering over you and blurring your reality on life – disorienting, bewildering and disconcerting. In my situation, it was hard to know if this was down to the menopause or a by-product of the cancer. I expect it’s a bit of both.
“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm Is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about” – Haruki Murakami (Japanese author).
There is so much more acknowledgement and support of the menopause these days and the extent of suffering for many women. This includes medication and therapy. Menopause occurs due to a gradual decline in the reproductive hormones, oestrogen and progesterone, because of natural aging. Hormone Replacement Therapy (HRT) is a treatment used to replace the hormones that the body is no longer producing. However, if you have had breast cancer, some of the options are not appropriate. For example if, like me, your breast cancer was oestrogen receptor-positive you are likely to be undergoing endocrine therapy, also known as adjuvant therapy. In my case, this is a drug called Tamoxifen, taken for a minimum of five years. Tamoxifen blocks oestrogen from reaching the cancer cells. So, as you can see, it would be a contradiction to be treated by something which replaces the oestrogen when that is what would put me at risk of the cancer returning.
There are many other ways to treat menopause symptoms and not everyone chooses HRT so I’m not overly concerned about that option not being available to me. This was not my only interest though. Being unusually vigilant (for me) I thought that it would also be pertinent to check that the vitamins and supplements I had been taking for many years would not interact with the Tamoxifen. I discovered that some supplements can’t always be safely taken along with prescription medication as they can change the way medications and radiation work in your body and may make the treatments less effective. This was not something my oncologist nor any other medical practitioner had spoken to me about.
“Tamoxifen, as well as many other medications, interacts with the CYP2D6 enzyme. This enzyme plays a major role in converting tamoxifen into an active metabolite called endoxifen, which is what makes the drug effective.
Some drugs strongly inhibit the CYP2D6 enzyme, which prevents adequate production of endoxifen from tamoxifen. This would substantially reduce the effects of the drug for you.” (Ref: verywellhealth.com)
The reason these concerns came to my mind initially is that I’m aware, for example, that Siberian Ginseng, which I have taken for some time, can affect fertility and should therefore not be taken if you’re trying to conceive. I realised that this must be related in some way to hormonal activity. So I looked it up online and this is what I found:
“Hormone-sensitive conditions such as breast cancer, uterine cancer, ovarian cancer, endometriosis, or uterine fibroids: Siberian ginseng might act like oestrogen. If you have any condition that might be made worse by exposure to oestrogen, don’t use Siberian ginseng.” (Ref: rxlist.com)
After many hours of surfing the internet I didn’t feel particularly well informed as there were a lot of contradictions. Some sites stated that certain supplements were good for preventing breast cancer whereas others talked about the same supplements having the potential to cause or promote breast cancer. Feeling very overwhelmed by this, I decided to contact a friend who is a pharmacist. She kindly said she would see what she could find out for me. Specifically I asked her about: Siberian Ginseng; Green Tea; Zinc; Magnesium; B12; Cranberry; Vitamin D, Calcium and a herbal supplement for skin health called HRI Clear Complexion. This was what she sent me:
“HRI clear complexion: Tamoxifen can interact with anticoagulants which I know you didn’t mention as something you are taking but the HRI clear complexion contains burdock root which can affect blood clotting so I would avoid if possible.
Other supplements mentioned: NB All dietary supplements are legally defined as ‘food’ so the information on chemical interactions is limited and often conflicting.
However, when researching the individual supplements you mentioned, ginseng came up as one to avoid as it can reduce the effectiveness of tamoxifen or increase its side effects. Similarly with green tea. This can increase the level of tamoxifen in the blood with unpredictable results and an increased chance of side effects.
I couldn’t find much info on the other supplements but things like vitamin D are fine which may help with some of the side effects of Tamoxifen and there is some evidence that shows it might also inhibit breast cancer growth at a safe dose.”
The reference to anticoagulants was a surprise as I had no idea that Tamoxifen carries a risk of Thromboembolism. Thromboembolism is the name for when a blood clot that forms in a blood vessel breaks loose, is carried by the bloodstream, and blocks another blood vessel. This is a dangerous condition that can affect multiple organs, causing organ damage and can even be fatal. There is a small increased risk associated with tamoxifen treatment and the risk is higher for women with a personal or family history of thrombotic disease. Thankfully I’m not in that category.
While waiting for a response from my friend I also popped into my local ‘Holland and Barrett’ store, one of the world’s leading health and wellness retailers, to see if they could give me any advice. The lady I spoke to was very helpful and gave me a few snippets of information but it was a bit nebulous and I still felt I needed more clarity. One thing she did tell me though was that Zinc is a cell producer (hence why it is good for hair, skin and nails). After speaking to her I did a bit of my own research and this (in summary) is what I found:
“Zinc has long been known to play a vital part in human health. However, the mechanisms for delivering zinc into cells are not well understood. New research has identified one switch which allows zinc to flow. This has implications for a number of diseases, including aggressive types of breast cancer.
Dr Kathryn Taylor, of Cardiff University’s School of Pharmacy and Pharmaceutical Sciences, said: “We know that zinc, in the right quantities, is vital for development, our immune systems and many other aspects of human health. But when something goes wrong with the body’s zinc delivery system, it looks as though disease can result. In particular, our research has shown a link to highly aggressive forms of breast cancer. Our better understanding of how exactly zinc is delivered suggests if we can block malfunctioning transporter channels, we can potentially halt the growth of these forms of cancer. We believe this makes zinc, and zinc delivery, a high priority for future cancer research.” (Ref: Sciencedaily.com)
I also contacted my MacMillan nurse to ask if she could email the oncologist for me but she said I would probably have more luck by contacting ESHT (East Sussex Healthcare Trust) Medicines Information Team. Initially she gave me a phone number but it wasn’t recognised so she then forwarded my email to the team and they responded directly to me. This is the information I received from them:
“The data relating to the use of herbal medicines is really limited however we do subscribe to a complex database which does contain robust information.
The tamoxifen that you are on is cleared by a number of liver enzyme pathways. This unfortunately means that it is often the subject of many drug interactions.
The green tea, Siberian ginseng, cranberry and zinc are all documented as interacting with tamoxifen. We would therefore discourage the use of these. Vitamin D in high doses also interacts but this is dose related. If you are taking less than an 1,000 iu a day this is not thought to be a problem.
Magnesium and B12 as long as they are not in high doses have not come up as an interacting item.”
I also discovered that vitamin D levels may be linked to the effectiveness of tamoxifen and that levels of endoxifen tend to be significantly higher in women in the summer months which suggests that vitamin D may help fight breast cancer. As if I ever needed an excuse to spend time at the beach….
This brings me on to food and links with breast cancer. To be fair, that’s a whole other story and would need its own separate blog but, in short, there are also many contradictions around diet and breast cancer. One example is soya/soy protein. I have read lately that this is good for preventing breast cancer. However, it seems it’s not quite that black and white as it again depends on your individual diagnosis.
“Consuming soya remains controversial amongst those diagnosed with breast cancer. The concern often stems from the fact that soya contains what is known as “phytoestrogens” – chemicals which have structures similar to oestrogen. Because of the potential for these chemicals to bind to oestrogen receptors, it was hypothesised that they could potentially stimulate the growth of ER+ breast cancers. However, there is actually increasing evidence to suggest that soy consumption may be beneficial in reducing breast cancer risk, mortality and recurrence, even whilst on tamoxifen. Currently, there are no definitive answers to whether soy should or shouldn’t be included in the diet. With more human clinical studies, our understanding can develop.
There is no clear evidence to suggest that you should stop consuming soya after being diagnosed with breast cancer and whilst taking tamoxifen – it may even be beneficial. So, if you do regularly have soya, or cut it out because you thought it could affect your treatment, feel free to carry on consuming it as part of a well-balanced diet. If you don’t like soya or never included it in your diet before, there’s no need to start now, but if you would like to include it, talk to your doctor or nutritionist who can advise you further.
Like soya, flaxseeds also contain phytoestrogens, which have caused concern for women with breast cancer over the years. However, current evidence seems to suggest that flaxseeds are safe for people who are on tamoxifen. Not only are they safe, but also like soya, flaxseeds may, in fact, be beneficial to those with breast cancer and who are on tamoxifen, with studies suggesting that its consumption may reduce the risk, growth and recurrence of breast cancer.” (Ref: owise.uk)
It’s all a bit of a mine field and I feel all I can do is be very cautious. If in doubt I will avoid. So far the lack of zinc has had the most detrimental effect. My nails have literally fallen apart – splitting, peeling, not growing. I’m just relying on hand creams at the moment but it’s not helping much. All I can do is research an alternative remedy that doesn’t contain zinc but I am struggling to find one! I’ve never had great nails as I was a nail-biter until my late teens so they are quite weak anyway. I’m not even too bothered about having long, glamorous nails but, when they are so brittle and constantly break, they get scratchy and catch on clothing. Not the worst thing to have to deal with, in the grand scheme of things, but just another repercussion of my cancer experience.
“Getting knocked down in LIFE is a GIVEN. Getting UP and moving FORWARD is a CHOICE.” – Zig Ziglar (author, salesman and motivational speaker).
Hoping for a Happy Ever After 