This feels like quite a poignant blog to write. Twelve months ago on the 8th August 2021, I wrote my first blog about my diagnosis. Tomorrow, I will take my blue matt and wear my green anti-slip socks for the last time. Radiotherapy finishes 9:30am tomorrow morning and next Wednesday will be my last oxygen therapy session – the culmination of a year’s worth of treatments and the roller coaster ride of emotions I experienced each step of the way. I will no longer have to rush from one treatment to the other taking up half a day each time! It almost feels like all the roads have come to meet in the middle now, or more specifically the end! I will write this blog and then take a break until the end of the year when I will have my various scans and meetings with the radiotherapy team, the oncology team and the surgeon to discuss how I’m healing, whether the cancer has all gone and what happens next.
I realise, if I was being more careful in sharing my story, I should have written in each blog some sort of disclaimer. For those who have followed me from the very beginning, I want to thank you for continuing to read, for supporting me along my journey and for metaphorically holding my hand throughout the process. It has been a great comfort knowing my story might be helping some people in whatever manner along the way. But, it is just what it is, a story, a series of entries from my Cancer Diary or C’s Diary of the things I have experienced along the way since I was diagnosed with Stage 3, Grade 2, Ductal In Carcinoma, ER+ PR+ HER2- Breast Cancer back in July 2021. In no way do I claim to know more than the doctors or the specialists in this very complicated and scary field of Cancer. I don’t want to ever mislead or misguide anyone through this minefield of information. This has been a very personal journey and every patient is different with a different outlook, different diagnosis, different immune system, different hospital, country/continent and different support structure.
What I have tried to do in writing my blog is to share the challenges one can face, as a cancer patient, and hope that it may help give confidence back to the patient and their families when making some of their decisions about treatment and the sorts of questions you can ask along the journey. You do not have to accept everything you are told but if you choose to challenge it is important to hire the right specialist team around you to support you in the upcoming important treatment decisions you’ll need to make.
I do understand, however, that for some – like me – knowledge can be key but, for others, it can be super overwhelming and some patients may just like the comfort of someone else making the decisions about their medical treatment for them. One dear friend only asked me the other day “wouldn’t it be easier and less stressful for you to just go along with what the doctors advise rather than researching and fighting each step of the way?” Either way is ok of course but, my point, there are choices I just didn’t realise I had until I started this journey. Recognising that I had choices gave ME the power to get some control back and to fight this horrible and all-consuming disease at every stage and gain, for me, a better insight into the type of treatment that would best suit me and my specific type of cancer.
It’s important for those starting out on their Cancer journey to realise, unfortunately, whilst chemo and radiotherapy may only be for a short time, 5 months and a few weeks respectively, as in my case, treatment beyond that can go on for years after and that has its own challenges when it comes to deciding which one and for how long you are prepared to do it for. Again, I have not ever made any of these decisions alone. I have my amazing Functional Nutritionist Silvia Grisendi. I also have the wonderful Patricia Peat at Cancer Options and I read a lot and have gleaned vast amounts of crucial information from my various facebook groups around the world.
This extra team of mine has been crucial in helping me make the very important decisions around treatment as well as therapies, diet and supplements in how to help support me manage and prevent any side effects etc. This team has been working with me in conjunction with my wonderful NHS Oncology Team at the PRUH and Surgical Team and Radio Team at Guys & St Thomas’ Hospitals. Yes, I had to change a few of my team around to get the right ones in place for me but now that I have, I really do feel I have the ‘dream team’ to help me work through every stage. You’ll know when you have the right person working with you for that is what they do, work with you, listen to you and never force you into doing anything you don’t want to do. There is trust and mutual respect, I think from them too, that here is this patient who has no medical training but she is willing to learn, ask questions and literally fight for what’s right for her life and her future. All I did was ask for a different oncologist, to have my radiotherapy managed by a different hospital and I asked for a specific surgeon that had come highly recommended (who was already working at the hospital) by another cancer patient friend. If you don’t ask, you don’t get so where’s the harm in asking?
And so to my last major decision…. What hormone treatment did I opt for? This question has been plaguing me for weeks now. Do I go for the post menopausal hormone treatment Letrozole, that requires me to also have a monthly insertion of Zoladex to push me through menopause and keep me there and then go back into the chemo suite every 6 months to have an infusion of zoledronic acid which are biophosphonates to help improve bone density given I’ll be suddenly pushed through menopause and may experience all the symptoms of menopause all at once in one fell swoop? Can I avoid doing this at all? Are there any alternatives?
Well, yes there are, for someone like me who was pre-menopausal before I began chemo treatment last August. How you find out if you are pre or post menopausal is through a blood test but your GP or doctor has to approve it because they look for something very specific in the blood. My first blood test showed I was pre-menopausal but then after chemo, understandably, my blood showed I’m post menopausal. But we can’t be sure if it’s because I’m now in a ‘chemo-induced menopause’ of if I’ve actually been pushed through it altogether. And, I won’t know this for 9-12 months post chemo – when, in theory, all the chemo and radio will have left my body to give an accurate reading. Unfortunately, by then, I will have missed my window of opportunity to take hormone treatment therapy which has been explained would improve my chances from 70% of survival to 80% with the hormone treatment added in.
So, here’s an example of how my wonderful oncologist, Dr Mark Nathan handled my questioning and disappointment when I heard the news he shared with me last time…. He listened to me, was patient as I proceeded to ask question after question about the Letrozole option! (I wouldn’t be surprised if he tells his admin team to allocate me extra time when he sees that I’m coming in given how long I’m in his office questioning the treatment and options available to me – every time I go in!) But, he never makes me feel like I’m taking up too much of his time – ever!
It’s difficult to explain but it felt all wrong, for me, that I should agree to take Letrozole for another 4 years plus these monthly insertions and 6 monthly infusions! I felt totally overwhelmed imagining what the next four years of my life would look like – especially as Dr Nathan felt this was the better option available to me because it had an 88% chance of success compared to the Tamoxifen at 85%. Whilst they are the figures and that is the maths, it felt too much for me. Whereas Tamoxifen is one daily pill and would still help me block some of the oestrogen being produced by my body. He gave me the option to go away and think about it and come back to him in a week’s time….
I hurriedly emailed Silvia and Patricia and got emergency meetings this week in with both of them explaining my dilemma and requesting a frank discussion about my options. I was particularly keen to understand the way my hormones metabolise and my genetic make up which might help clarify which of the two hormone treatments were the better option for me.
So, given my breast cancer is hormonal, I learned from one of my incredible Facebook groups – BRiC Private Group (Building Resilience in Cancer) from a lady called Sonia that “you can get DNA testing to see your CYP2D6 status. If you are a slow metabolizer, Tamoxifen doesn’t work that well for you and you should take something else. And if you are a fast metabolizer the medication will work great but you’ll have lots of side effects.” She went on to explain that there is a “similar situation with Ki67 scoring and anastrazole (which Letrozole is from the same family). Most of us aren’t getting access to these tests and then get put on meds that can cause severe side effects.” Luckily I had a DNA test earlier on in my treatment and I had just received the results of my hormone DUTCH Test back. So, I wasted no time in screen shotting this information to Silvia and Patricia to ask them to look into my DNA and DUTCH test results to see how I may fare taking these hormone pills.
Good news, according to Silvia, my CY2PD6 gene is normal so that means I will convert Tamoxifen well and it should work well for me. The only thing is that whilst Tamoxifen blocks the oestrogen produced by my ovaries, it won’t block oestrogen being produced by the other parts of my body. Because of this there is a very small chance that because it’s only blocking my ovary oestrogen production that my body may start over producing oestrogen elsewhere and end up with a very small chance of getting cancer elsewhere in the body. I need to add here, that Silvia emphasised in all her years of practicing and the thousands of ladies she has helped support, not one of these ladies has had a secondary cancer as a result of taking Tamoxifen but it’s a risk and we, the patient, have to be aware of this risk. I am not much of a risk taker but I felt comfortable enough given what Silvia and Patricia have said about how well I methylate hormones that I should be safe enough – phew!
The thing is in Letrozole, you don’t have this. There is no ‘other cancer’ potential scare. Also, Letrozole is metabolised through something known as CiP3A4. From my DUTCH and DNA test it shows that it is likely that I wouldn’t have any problems metabolising Letrozole either.
Silvia explained to me that the most important thing is to find out how my body metabolises oestrogen from my DUTCH test. Whilst I showed “extremely low levels of oestrogen”, which would be expected in any patient having undergone chemo and radio in the last 6 months, I was wrong to assume that it meant I would continue to show “extremely low levels”. These results, however, will change as I finish treatment, so I will need to test again later down the line. But what the DUTCH test did show (and wouldn’t be affected by what treatment I’m on) is how exactly my body metabolises oestrogen so those results create a base line to measure from. And as long as that’s not bad (which it isn’t), then we can assume I should be fine. Any future testing may show improvement on how I metabolise oestrogen but won’t go below the baseline results that I have.
A couple of extra snippets of information that Silvia imparted were around support for hot flashes (which I am experiencing more and more of, not just at night time) and fasting. She suggested taking GLA once a day. According to the Natural Dispensary website “GLA 240mg softgels supply gamma-linolenic acid from the oil of borage seeds. GLA is essential for smooth and healthy skin and female hormonal balance. GLA should be considered for skin health (along with fish oils).”
I asked her, moving forward, “is 13 hours of fasting still the ideal for women like me?” Her answer was a definitive “yes”. She explained that women who wish to lose weight may opt for a 16 hour to 20 hour fasting period but the results from fasting for that period of time for men and women differ. She mentioned that fasting for this long might even have some detrimental effects in terms of liver function and elimination of hormones whereas fasting for 13 hours you get no detrimental effects and great results.
She did suggest that fasting for 24 hours one to two times a month – water only – is also beneficial because it brings down a lot of the markers in inflammation and sugar pathways that may contribute to cancer. Or, she indicated doing a 5 day “fast mimicking” diet where you just consume nutritionally dense food at 600 calories a day, there is scientific proof to say that after 3 days of the 5 day diet, there is evidence to show that a person gets a whole new immune system! Which I think is fascinating! And a simple, cost effective way of reducing the chances of getting any more cancer or other diseases – especially given Silvia believes that pretty much all diseases start in the gut!
So after my call with Silvia I started to lean towards choosing Tamoxifen. Then after my call with Patricia I made the decision to go with Tamoxifen – despite the number of women who have written about the side effects they were getting – because it’s one pill a day and my body is likely to be able to metabolise it well. So minimal side effects. Also, Patricia felt that my decision is a good one given how active I am. Letrozole has a propensity to give women bone and muscle pain – some women wake up after taking Letrozole and feel like they’ve aged to 90 over night! No thank you!
I have also made the decision to only do it for a year. My reasoning is that in 12 months I’ll be 52.5 years old – which I think will be safe to assume I’ll be through menopause then. And, by doing it for just 1 year I will have received most of the advantages of taking a hormone inhibitor by taking it in the window shortly after radiotherapy so receiving the extra 10% benefit. But, by only doing it for 12 months I won’t have the build up of toxicity that being on it for 4+ years would give me. According to Patricia, most of the side effects are long term side effects. Given I function already on very low oestrogen (apart from my annoying many memory lapses!!), I shouldn’t experience too many other detrimental effects. But what it’s taught me is my memory lapses and hot flashes are all to do with my very low oestrogen levels.
Another piece of good news, is by continuing on with Low Dose Naltrexone (my anti opioid repurposed drug) that this should also help me with the side effects of Tamoxifen, particularly with my chemo brain! And, then by continuing Metformin (anti diabetic repurposed drug) taking it once a day before my biggest meal and Berberine twice a day before the other main meals will help block more than just the glucose pathways but it also blocks many other cancer pathways. I need to avoid iron because cancer cells love iron and Patricia is advising I do Metformin for another year alongside the Tamoxifen and Melatonin too for at least a year as it is a very good cancer blocker and has a great effect on how it methylates (i.e. eliminates) hormones.
With my last radiotherapy tomorrow and not needing to start Tamoxifen until I return from holiday, I feel as calm as I can be about the next few months ahead. And with Patricia’s parting words at our last zoom meeting that “with everything else that you are doing, the chances of recurrence are negligible. I am not worried about you at all”. I think I have earned my rest.
Next blog will be sometime November/December 2022.