5-year cancerversary after HER2/ER-positive breast cancer

It’s a date that no cancer patient will ever forget.  The day they were diagnosed.  The 23rd of April this year marked five years since the day I received that devastating news. I heard the words that no-one ever wants to hear. The day I was diagnosed with breast cancer. 

It’s an odd feeling, celebrating the point in time that something frightening happened to you. This particular ‘cancerversary’ was a strange day for me and I unexpectedly experienced mixed and strong emotions.  I felt uber happy and super grateful to have got this far because it’s such a huge milestone for any cancer patient in remission.  My cancerversary also poignantly fell on a Thursday. We took part in the weekly clap to show appreciation for our NHS, carers and key workers who are bravely working so hard on the frontline during this COVID19 crisis.  My appreciation that Thursday was even more heartfelt as I owe so much to the NHS.  To all the doctors, surgeons, nurses and myriad staff who cared for me throughout my breast cancer diagnosis and treatment.

As well as feeling pleased to have reached this five-year milestone, I also had an overwhelming sense of guilt.  Guilt for friends who have not survived.  Guilt for others who are living with secondary cancer and don’t have the luxury of being cancer-free.  All the feelings and emotions associated with the classic survivor’s guilt.

While many factors play a part in someone’s breast cancer returning or metastasising, sadly 30% of all primary breast cancers will return and spread. There are many things one can do to try and reduce the risk of breast cancer recurrence such as diet, exercise, maintaining a healthy weight etc. But it does seem like it’s a bit of a lottery, or more like Russian roulette, for those whose cancer does return.

I think the emotions I felt and continue to feel are magnified by the devastating loss of a good friend last year to breast cancer. Having connected with Rosemary online through her beautifully written blog, we met up in person and started a lovely friendship.  Together with Dee, who had also been blogging about her breast cancer, we became really good friends. Our threesome provided each other with amazing support whilst we were going through treatment and out the other side.

After suffering shortness of breath and with a suspected blood clot on her lung, further investigations revealed that Rosemary’s cancer had sadly returned. It had metastasised in her liver and to the extent that it was untreatable.  She and her family were given the heartbreaking news that she only had weeks to live.  Within the space of a month, she had moved to a hospice into palliative care to spend her last days surrounded by her beloved family before she passed away.  We had both been diagnosed around the same time with a similar stage cancer – how on earth could this be?

Rosemary was the loveliest and most caring person you could ever meet. She was a truly kind soul who adored her family and dedicated her life working to selflessly help, encourage and support others.  Rosemary was such a positive lady, she even started the hashtag #TeamPositive when she was diagnosed with breast cancer to help conversations with her family.  The hashtag grew and now it lives on evoking memories of her wonderful spirit and ethos.

As we said a very emotional goodbye to dear Rosemary at the celebration of her life, it was evident how much of a positive impact this special lady had on the lives of so many.  She leaves a lasting legacy of love, kindness and compassion.

team positive

 

It was difficult to deal with her loss.  Not only because of the shock and speed in which she was taken and the overbearing sadness I felt for her family and friends.  But it also ripped the rug out from beneath me as I was happily getting on with life and putting cancer behind me.  It brought everything all back to the fore and I felt very anxious and started to immediately mistrust my body.

The shock of her passing was another stark reminder of how short life is. That sometimes we take it for granted that we will be here tomorrow. That we must focus on what’s important, to appreciate our loved ones, live for the day – carpe diem – and not put off doing the things we want to do in life.

Of course, this is now impossible to do during the coronavirus  pandemic.  It felt doubly strange being in lockdown on this milestone cancerversary.  Other than eating a delicious meal that my hubby made and raising a toast, there wasn’t anything else I could have done to ‘celebrate’ this milestone.  I think so much of all those who have lost loved ones and are grieving and who cannot be with, or gain comfort from, their family and friends.  I also think of the cancer patients who have been given a terminal diagnosis and will want to be spending their last days being with family and doing enjoyable things.  Or those cancer patients who have finally got themselves through treatment with the hopes and dreams of being free of hospitals, going on holidays, doing special things and enjoying themselves.

There is always the thought in the back of my mind that it could come back at any time. Sometimes that’s more prominent than others. I also had a bit of a misconception about reaching the five-year point. Cancer is most likely to return within this time and in getting to five years you might think you’re home and dry at this point.  Something which is echoed in this really good article on the Late Recurrence vs. Early Relapse of Breast Cancer  where it talks about breast cancer survivors underestimating the risk of late recurrence:

“A survey led by the Canadian Breast Cancer Network found that women often underestimate their risk of late recurrence. In the survey, only 10% were aware of the risk of recurrence after five years of tamoxifen therapy, and 40% felt that they were cured after hitting the five-year mark.2

It goes on to say:

“With estrogen receptor-negative tumors (HER2 positive or triple-negative), the risk of recurrence peaks at around two years post-diagnosis, and is relatively uncommon after five years.

Hormone-sensitive breast cancers (those that are estrogen and/or progesterone receptor-positive) account for roughly 70% of breast cancers. It is these tumors that are more likely (more than 50%) to come back after five years than during the first five years after diagnosis.”

It was a hard post to read, especially as I fall into the estrogen receptor-positive and HER2-positive categories, but it contains detailed information backed with statistics and evidence.  The truth is, we will never be ‘cured’ of cancer, just thankful to be living with ‘no evidence of disease’.

I would have had my annual mammogram and MRI last month, but this has been cancelled due to COVID19. Like a lot of other cancer patients, I am terrified about whether I should take the risk of going to the hospital for my scan/check-up. I’ve been told that my local hospital has put in strict measures by giving people a mask on the way in, using hand sanitiser, taking your temperature, only allowing entry through the appropriate entrance for your appointment with security on the door checking and using social distancing. Of course, one cannot social distance whilst having a mammogram or other scan.

I’m taking solace in the fact that I found my breast lump, but that doesn’t take away the fear of what might be going on in my body in the meantime.  Jo Taylor, founder of After Breast Cancer Diagnosis (ABC) Diagnosis, created the brilliant infographics below to help primary patients recognise symptoms of breast cancer.

For ductal breast cancer:

ABCD-Ductal-Breast-Cancer-v9-20200224-768x432

For lobular breast cancer:

ABCD-Lobular-Breast-Cancer-v8-20191121-768x432

 

5-year cancer survivor

 

I’m not sure whether it feels like 60 months ago.  On a regular day, probably yes, on an anniversary like this, no it doesn’t.   So, so much has happened in those 260 weeks. So much distress, pain, fear and anxiety. But thankfully, these times have been outweighed by happy and fun-filled days making memories with my dear hubby, family and friends.

A friend put me in touch with her sister-in-law before I started chemo as she had recently been through breast cancer treatment herself.  She told me that it wouldn’t seem possible now, but that there can be positive things that come out of this. How could there possibly be anything positive as a result of having cancer I thought?!

But here, five years on, as I reflect over the last 1,825 days, there have been positive experiences from my breast cancer diagnosis and I have done things I would never have done before.  One example is when I nervously walked out on a stage in front of a packed hall of people (including my supportive family and friends) to help raise money for the fantastic Breast Cancer Haven charity   Also creating this blog has been hugely positive. Not only is it a form of creative therapy for me, it has enabled me to connect with and be part of a huge online supportive community of breast cancer patients. It has also helped me create two very special friendships.

As well as giving back to charities and organisations who supported me, I am now positively using my experience to help other patients who are going through a cancer diagnosis and treatment. I point people towards the resources, support and communities that helped me on my journey.  In my spare time, I also now work as a patient expert for for merakoi. They partner with healthcare companies to bring the patient voice to healthcare solutions. Ultimately this helps to inform and innovate healthcare that makes a difference to patients’ lives.  It’s such a great opportunity and I am part of a hugely inspiring team of patient experts and a supportive company whose mission, values and ethos are aligned with my own.

I look forward to many more positives and happier days in the future, whilst also remembering those we have lost along the way.

Stay safe #TeamPositive xx

2 BC Medical Journal. Breast Cancer Survivors Underestimate Recurrence Risk. 2007.

Images by: abc diagnosis

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