Ten Years After Breast Cancer Diagnosis – the lessons I’ve learned!

On the day I was diagnosed, I was also starting a new job managing a team of social workers, a reasonable commute away from home (in the opposite direction to the hospital).  I had to tell my new manager of my diagnosis, on that first day in my new job!   I had no idea how the news was going to be received.  Fortunately for me she was very supportive and accommodating.

All of a sudden though, life got really scary.  I had no supportive partner.  I had no parents.  My mother died from illness when I was young,  and my father died suddenly just six months earlier.  I was on my own.

After my initial shock of the diagnosis and after I learned about the various treatments suggested to me, I told my consultant that I didn’t have time for cancer.  I told him about me being a single parent, I told him about my new (self-employed)  job.  I told him I couldn’t take time off, that I needed the money, that I needed to support my kids. 

Treatment Options

The treatment options didn’t sound like much fun but the worst thing was that I got to choose.  I was sent away to decide what surgery I wanted.  I could decide to have a mastectomy, or I could choose to have a lumpectomy to remove the tumour only and preserve the breast.  The problem with option number two was that if following a lumpectomy, further cancer cells were found, then I would need to undergo the knife again and have the breast removed.  If I had a mastectomy, I could then choose to have a reconstruction – or not!  Mind blown already!

I was given a week to decide. I honestly didn’t know what to do for the best.  I remember speaking to my ex-husband about it, who advised to go the whole hog ‘just get it off, it’s not like you’re a spring chicken any more and are going to go topless on the beach’.  Really???  That’s your advice??

Whilst his intentions I know were good, to me it wasn’t that black and white and as far as I was concerned, I might just want to go topless on the beach.  Why not?  Maybe I just want the choice.  Deciding to have a part of you cut off is a major decision, it’s a huge responsibility.  It’s not a pragmatic decision and it’s not just a physical decision, it’s an emotional one and a psychological one as far as I’m concerned.  I also rather tend to think that ‘less is more’, and ‘if in doubt do nowt’.

In the end, I decided to go for the least invasive option possible and chose the lumpectomy despite not knowing if I would need to undergo further surgery.  In discussion with my consultant, he said that the tumour could have been there for up to two years.  TWO YEARS!  How could I not know?  This was a stage three cancer that had been growing and developing in my breast for up to two years.  Wow.  Because of this, there was a possibility the cancer had spread to my lymph nodes and that was a totally different story.  If cancer cells were found in my lymph nodes then I would definitely need chemotherapy.  The thought of chemotherapy terrified me.

The surgery went well, and they took some lymph nodes too.  As far as the surgeon was concerned the operation had been successful.  The oncologist however had a different view and recommended further surgery and a mastectomy.  She informed me that even a random cell could have been missed and travelled elsewhere in my body.  I was also advised by the consultant that they had found a number of calcifications which although not cancerous could turn cancerous in the future.  There was also a possibility that they wouldn’t and that women often have these calcifications, and they stay as they are.  Another decision to make.  Further surgery?

 The thing is no one could tell me for sure.  Was there a random cell running rampant around my body?  Would it metastasise and develop into another tumour?  No one knew.  Now I’m a bit of a scientist and I like to know how things work.  So, I set about doing some research.  I read everything I could find that related to my type of breast cancer, oestrogen receptive.  More on that later.

I decided with the medical team (but against the oncologist) not to have further surgery.  I agreed to a course of radiation which was explained to me as a painless treatment which I would need to do every day at the hospital in the opposite direction of my work for a month.  I was told it might make me feel a bit tired and my skin might get a bit irritated.  Easy, I thought!

How wrong I was.  The radiation was brutal.  The fatigue was immense. It’s quite hard to explain but I found that I was okay one minute and the next totally wiped out, like head on my desk wiped out.  This can still happen sometimes, though it is much less frequent.  The effects of radiation can stay with you for years.

There are many other side effects of radiation including nausea, hair loss (the area being treated), lymphoedema, low mood/depression, sex and fertility issues, stiff joints and muscles,  diarrhoea, loss of appetite,  soreness, dry mouth,  discomfort when swallowing, weight loss, bad breath, reduced sense of taste,  burning skin.  It can also scar certain organs in the area being treated, which in my case affected the top of my heart.

So, radiotherapy was NOT a walk in the park, as I thought it would be!  Coupled with continued working and all the travelling I was doing each day, being a single parent and trying to manage my life, I was so stressed and probably on reflection, I would say my mental health was not in a good place.

I was offered some alternative treatments by my hospital trust to help me cope with the emotional impact of my diagnosis and treatment.  Thanks to them I discovered the powerful effects of hypnotherapy which at first, I was sceptical about, but then I found over the weeks that I began to feel calmer and to process what was happening ‘to’ me.  I started to recognise that I needed to take control, to take some responsibility for my life and the situation I found myself in.

I was very fearful of the cancer coming back and those words of the oncologist and the random cell haunted me for years.  I spent years worrying that the cancer was hiding somewhere in my body and all will be revealed at some point.  This terrified me and once again I stated reading, researching.  I learned as much as I could about cancer, it’s symptoms, what it actually is, and what happens in the body.  Now I know I’m not an actual scientist, I’m not a qualified doctor, I’m certainly not an expert or specialist in cancer or any other illness for that matter; but I learned an awful lot.

  1. Cancer cells are in all of us, they are cells that have gone awry.  We don’t realise they are in us because our killer cells kill them off.
  2. Our body has an amazing ability to heal if we make sure it has the right conditions, ie, the right nourishment, an absence of toxins including heavy metals.
  3. The mind/body connection is paramount.  Using the mind to affect change in the physical body is a real thing.

Tamoxifen

Following the completion of my radiation treatment, I was told I needed to take an oral hormone treatment, tamoxifen.  Honestly, the clue should have been in the X!!  If I thought my treatment to now was brutal, then things were about to get a whole lot worse.

This tablet, to be taken daily for five years, was sold to me as a treatment to gradually reduce oestrogen in my body and thus reduce my risk of developing breast cancer again.  Great, a medication I can take that will stop the cancer coming back.  Now the list of side effects of this drug are too many to mention in full (please look up if you need this information) but the most scary words  listed are ‘serious, life threatening and fatal events from use of tamoxifen may include uterine cancer, stroke and pulmonary embolism’ (reference Drugs.com).

Further, tamoxifen is toxic to the liver and can cause hepatitis and six times increase in risk of liver cancer if you take tamoxifen for more than two years.  It can also cause eye damage and damage to the vocal cords, asthma, psychological issues and of course menopause (reference:  arizonaadvancedmedicine.com).

My mother died aged 52 after a serious of strokes.  I also had a number of family members develop different cancers and a few, younger than me who had died.  Why on earth would I want to increase my chance of developing another different type of cancer, or a stroke? 

I did start taking it initially before I was aware of it’s serious risks and immediately on doing so I experienced horrific side effects.  Please scroll on by if you’re squeamish!

Physically, I began to experience thrush like never before.  It was so bad they couldn’t even wash the cells taken in a smear test.  The skin on my  genitals began to peel and bleed and I was so swollen I couldn’t bear to wear any underwear or have any clothing touch the area.  It was quite hard to walk sometimes and even sit.  The itching, pain and burning was so bad.  I would buy ice packs and hold on the area to give me some relief.

I began to develop headaches, brain fog, I felt nauseous, lost my appetite, my skin on my hands began to peel, my joints hurt, my knuckles on my hands swelled and grew big (they still are), I experienced dizziness, fatigue (even more), hot flushes, nerve pain and my voice began to change.

Psychologically I started to feel anxious, I experienced some panic attacks, I remember the first panic attack I had was completely random while I was watching T.V. on my sofa at home.  I was the only one in the room and I felt scared.  I’d never experienced anything like this before.  I began to feel low in mood.

Essentially, I was thrown into menopause like being thrown at a brick wall.  And worse still was that you are told you cannot take HRT or plant oestrogens because this could invite cancer back into your life.     

After six weeks I stopped taking tamoxifen and when I told the breast cancer nurse, she persuaded me to try again, to increase my tolerance.    It got worse and worse, I went to the doctor with a list of all  my unbearable symptoms who wrote to the oncologist, the same one that wanted me to have a mastectomy, who told me about that random cell!  Her response?  There is nothing else to take, this is the approved medication, the only medication and if I stop I am risking the cancer returning and reducing my chances of survival in  ten years time.

By now it was two years after my diagnosis and I had had enough.  I had also read enough and learned enough to know that there is no need to be afraid.  There is more than one way to skin a cat as they say and I don’t have to follow the medical model if I don’t want to.  I felt I wasn’t being listened to, not being taken seriously.  I’m sure they looked at me and thought I was a crank.  In fact I remember one consultant laughing and saying to me ‘where did you learn that, have you been reading Dr Google?  I felt insulted, belittled and quite literally laughed at. 

You see there is sooooo much cancer, there are soooo many women (and some men) contracting cancer, the breast cancer unit is sooooooo full, it’s soooo busy it’s unreal.  They don’t have time to listen, to discuss, to hear your story, your views, your opinions, what you want.  They do what they are told to do, what they are taught, they prescribe the treatment that is approved.  It is a revolving door of cancer patients.

To demonstrate just how busy they are:  as part of my learnings, I decided that I didn’t want to have any more mammograms, a decision that didn’t go down well with the medics at all.  One day I received a letter from the hospital signed by my consultant sending me congratulations on my mammogram which did not show any tumours.

I called the hospital and told them there must have been a mistake as I hadn’t attended for a mammogram.   The consultant admitted that he doesn’t read the letters.  He is sent a pile which he just signs.  The hospital had indeed printed a letter of success with my name on which was not read by the consultant but signed by him, which no one checked.  They apologised for the mistake.

Could It Be My Fault?

Going back to the beginning of this (very personal ) blog, I omitted to tell you that at the time of my diagnosis, I was self-medicating,  I was drinking a bottle of wine  and smoking 30 cigarettes a day.  I was also very stressed and had experienced a lot of trauma in my relationships.  I ate loads of dairy and I was a meat eater too.

ALL of these things are almost pre-requisites for cancer in the physical body.  Like a lot of people I just didn’t want to admit to myself that I drank too much or that I in any way possible could be responsible for the cancer in my body.  Yet at the same time, I knew that to be true.

*I discovered that chronic stress is probably the biggest killer and the biggest cause of cancer.  I had experienced chronic stress all my life from various sources.  I had lived in fear most of my life, starting in my childhood.

*I learned that women who drink just one alcoholic drink a week increase their risk of breast cancer by 15% .  I was drinking around 70-80 units of alcohol a week.

* Smokers are 15-30 times more likely to get cancer.  I smoked 20-30 a day for 25 years.

* Diet affects our health.  Meats are acidic and some carcinogenic.  Homogenised and pasteurised dairy is toxic.  Sugar is acidic and also feeds cancer cells which have twice the amount of insulin receptor sites as a healthy cell.  I ate red meat including bacon and I ate loads of cheese.

* Environmental toxins found in our everyday life are cancerous: cosmetics, toiletries, cleaning materials, pesticides, amalgams, EMF’s.  I used to think that products on our  supermarket shelves must be safe, however, now I check all ingredients  to limit my exposure as much as I can.

I did what I said I would do.  I took responsibility for myself.  I chose life over death.  After I stopped putting that toxic tamoxifen (yes, it is listed as a carcinogenic by the American Cancer Society!) into my body I made a plan to heal myself and my life.  Here’s what I did:

I retrained as a Clinical Hypnotherapist, qualifying in October 2016.

I stopped smoking with hypnotherapy on 4th December 2016. 

I then stopped drinking alcohol on 2nd January 2019 using self-hypnosis.

I quit eating refined sugars and processed foods in 2019. 

I reduced my exposure to chemicals and heavy metals from day one.

I became completely plant based in August 2019 cutting out all animal products.

I started a daily yoga and meditation practice in 2019.

I trained as a Meditation Teacher in 2020.

I introduced breathwork to my practice in 2020.

In 2023 I started training as a Kundalini yoga teacher.  I’m still studying.

And guess what?  Here I am ten whole years later.  I have survived ten years after my cancer diagnosis without the tamoxifen which was said to improve my chances of survival.

I am here because I took responsibility for myself, my healing, my body and my mind.  Because I took the time to learn as much as I could, to get well, to give my body the best chance it has to be the heathiest it can be.

My body is the cleanest it has ever been and even though I am getting older I believe it is the healthiest and strongest it has ever been.  I am not on any medications.  I have loads of energy, I sleep well, my diet consists of whole plant based foods that I make from scratch every day, my weight is not much more than it was in my 40s and I can get into some clothes I wore in my 20s.

The reason for writing this blog today was to mark my 10 year anniversary of my survival from breast cancer.  It is not to blame anyone, criticise anyone or judge anyone.  Everyone is different and on a different journey, everyone will make different decisions and that is exactly how it should be.  This is my story, my journey, my experience and my opinions. You must follow your own due diligence when it comes to your own health.

And that is the whole point, we are all different, we don’t all fit in the same box.  Each journey is to be celebrated.  Each life is to be marvelled at.  As life goes on, sometimes I forget about the start of this journey.  I forget that things could have turned out differently.  I may feel worry, anxiety, panic or fear.  I may forget what is important.  I may let my priorities slide a bit.

So, this blog is a reminder to me that I am still here, I am alive and well, but I could have died; and life is far too damn short to be fearful, to worry, to feel anxious.  This blog is a reminder to me to live my life, to be true to myself, to give myself permission to do what I want, when I want.  I am grateful to be here, to be given the opportunity to live and without question I am going to enjoy the next 10, 20 maybe 30+ years.