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 23^rd 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.

 

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:

For lobular breast cancer:

 

 

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

Cancerversary: Two-year survivorship and breast cancer screening

It’s that time of year again. Just as new life is sprouting all over, the anniversary of when I was diagnosed with breast cancer has come round again and today marks a new milestone – my two year survivorship.

I still cannot believe that it was two years ago now that I received the devastating news that, aged 38 years old, I had breast cancer. So much has happened in that space of time, and thankfully it actually feels much longer than two years now. Much of that is a direct result of me now living a much more ‘normal’ life and being more on track again.

I find it’s mixed feelings when your ‘cancerversary’ comes round. Part of you feels like it’s something to be celebrated (after all survivorship is a lucky place to be in which others are not so lucky). But it’s also very strange. You generally celebrate happy things like birthdays, wedding anniversaries – joyful things – and thoughts always come back of a very dark time which doesn’t seem appropriate to celebrate.

As the whole experience very gladly starts to become more of a distant memory, sometimes random thoughts enter my head and it all seems a little surreal, that I actually had cancer. But of course, it will never really go away, the worries and anxieties about what is really going on inside my body that I don’t know about. The loss of trust in one’s body and the fear of it coming back again.

As the anniversary comes round of my initial diagnosis, so too does the annual mammogram screening appointment. These feelings are magnified even more at this time of year as it’s time for my annual routine check up. Whilst blissfully enjoying life and living it to the full, the crazy thoughts start getting louder in my head about the upcoming scans. This is known as ‘scanxiety’ and those unfortunate to experience this know exactly what this feels like.  Rosemary and Rebecca both describe this feeling perfectly in their recent posts about the stress felt around mammogram time.

I received the letter confirming my appointment a few weeks ago. It dropped on the door mat like every other letter the postie delivers. But letters from the hospital are so unmistakable now.  I recognise the style of envelope, the font type and the franking they use.

The lump I had found two years prior had not shown up on the mammogram, it had only shown up on the MRI. Last year they reassured me that I would continue to have an MRI as well as a mammogram going forward because of the dense breast tissue that women my age have.

It was not apparent from the appointment letter whether this was for a mammogram or MRI. If it is an MRI appointment they usually enclose a detailed leaflet about the MRI scan. Despite them reassuring me last year, I was concerned they would have forgotten about this fact and I wanted to be absolutely certain I was due to have an MRI too.

I rang the number printed on the appointment letter.  I was greeted and spoken to by a lady I did not recognise and who, from the very outset, was completely insensitive to the needs, worries and anxiety of anyone who would be calling. She was abrupt, condescending and very unsympathetic.  Her telephone manner actually reduced me to tears and I asked if I could speak to my breast care nurse instead.

I had never encountered this response before when calling this department. The secretaries and ladies answering the phone had always been courteous, polite and had a gentle sense of empathy about them. Thankfully my breast care nurse called me back shortly afterwards. She confirmed that whilst unfortunately both scans cannot be done on the same day, I would indeed be receiving an MRI appointment as well.

When I had my routine screening this time last year, the results of the mammogram came back clear. This means absolutely nothing to me now given that my tumour did not show up on this before. I had the MRI scan a couple of weeks later.  I had to wait an extended period to receive my results. I was thinking that no news is good news. After all, they’d call me back straight away if something wasn’t as they’d expected right? Wrong. After about 3-4 weeks’ waiting (and a number of calls I’d made chasing the status) I received a phone call saying they’d seen something on the MRI and I needed to go back in for an ultrasound.

My heart sank when I received this call. Luckily the appointment was the following day so no more antagonising wait. My hubby came with me to the hospital and came into the consultation room with me. They explained that they’d seen something on the MRI and needed to do an ultrasound to investigate further. Once more, I undressed and laid on the bed ready for inspection with both fingers crossed. At 39 years old, why did I think this gesture would still have an impact on the result?!

After the doctor scanned the area, he said that from what they had seen they wanted to take a biopsy. This was agonising. Not again. Surely I wouldn’t be sucked back into the whirlwind of cancer land once more.

As I started to weep, my husband came and held my hand whilst they did the core needle biopsy. I couldn’t believe I was lying here again, one year later going through the same traumatic experience. When it was complete, I got dressed and once again, left the hospital in a state of shock and sheer fright.

Where possible, I’ve tried to shield my family from the distress of this not knowing and worry. My parents and sister were just about to go on holiday when I was called back for the ultrasound last year. My thinking was that I wanted them to enjoy themselves on holiday, it doesn’t happen often so why have them worry when it could be nothing? Upon her return and finding this out, my sister gently reprimanded me saying they would have wanted to know. There is always a very fine line between protecting your loved ones and involving them.

I am normally a very positive person, but cancer does horrid things to you. It had been bad news before so in my head I was preparing for the worst.  I went to a really dark place and was mentally preparing myself for having a mastectomy, losing my hair all over again and thinking morbid thoughts about how I’d want my funeral to be, even down to the songs I would want to be played.  To someone not living in cancer land, this will all sound absurd, insane and very extreme. But these were valid and at times all consuming thoughts.

This uncertainty and a question mark over what my immediate future held, meant I started to put decisions on hold until we knew what the result was. Even little things like going out for friend’s birthdays – I didn’t want to be wasting money that would be precious to us if we were to hear bad news.  All of this was also going on amongst the backdrop of being told at work that our jobs were being made redundant.

Thankfully, this was a false alarm and the results came back that there was nothing cancerous. I’m glad I didn’t spoil my family’s holiday as it turned out to be nothing to worry about.

My fear of scans has been intensified even more by finding a lump in my neck at the end of last year. I was up against a deadline at work, feeling really stressed and had an odd feeling in my neck.  At first I thought it was a vein, but after more prodding, I discovered a small lump above my collarbone.

I’d had a cold a couple of weeks beforehand and so it could have been related to that, but I also knew this was one of the signs of recurrence and is common for it to spread to the lymph nodes in this area. I immediately starting googling symptoms and what to look out for. After pondering for a while I decided it would be better to get it checked out rather than worry about it, so made an appointment with the breast clinic.

Once more the terror returned. How long had it been there and I hadn’t noticed it? If it was in my lymphatic system it could be travelling to other parts of my body too.

At the clinic they examined me and did an ultrasound on the lump. They said they didn’t think it was anything suspicious but they wanted to be absolutely sure so sent me for a CT scan of the neck/chest area.  I felt relieved that they didn’t think it was sinister and reassured that they were so cautious about investigating further. Of course the worry wouldn’t stop, not until the results were back.

I wanted to get this over and done with before Christmas, but when calling the scanning department they said they didn’t have any appointments free until January. Then a few days before Christmas I received a call to say they’d had a cancellation and was I free to go in. I was on annual leave for Christmas so was available to commit to the appointment there and then.

This was on the run up to Christmas and I’d spent quite a lot of money on presents for family and friends. I then started worrying that I’d have to return them all to the shops (a habit I’m normally very familiar with!) because we’d need every penny we have to survive going through all that again.

Once more, I didn’t want to worry my parents with another scare just before Christmas and chose not to tell them about the recent discovery at that stage. We had a lovely Christmas break with our families and friends and awaited the results that would follow in the New Year.  More waiting. There is always waiting.  And whilst you wait, there is uncertainty.

Upon going back to the hospital to receive my results, I was delighted to be told that once again, I had nothing to worry about and that the lump was completely benign and was likely just a swollen lymph gland.

Thankfully what they found in my breast last year wasn’t sinister. Equally the lump in my neck also turned out not to be anything nasty. But the rollercoaster journey you are taken on results in the same amount of stress, fear and worry.

Just at the time that new life is sprouting all over, I have such vivid recollections of this time two years ago. Spring time, busy at home working on the house, getting back in the garden after the winter period.  As I wrote in my previous post, it’s hard to escape the memories that evoke at certain times.

Whilst I await my mammogram, MRI scan and endure the all too familiar wait, I will remain grateful that I am still here enjoying life. I will still superstitiously be crossing my fingers hoping with all my heart that I get another clear result.

Please click here for more information on how to check yourself and the signs and symptoms of breast cancer.