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.

fingers crossedMy 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.

core needle biopsyAs 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.

she stood in the stormThankfully 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.

 cancerversary

8 thoughts on “Cancerversary: Two-year survivorship and breast cancer screening

  1. All thoughts are with you Allie as you get checked out again. I know that this time of year holds a special and not pleasant significance for you. Keep your eyes on the horizon (where there is probably cheese and cocktails waiting for you and Pats)

    Much love
    Rosemary
    x

    Liked by 1 person

  2. Horrible time, all the best with the wait, you’ve articulated a lot of my thoughts, I’m still awaiting my appointments for both MRI and mammogram, like you, my tumours (both breasts) were found with MRIs not mammograms. Scanxiety, will add that to ‘new normal’ I didn’t know a cancer diagnosis provided me with a new vocabulary!

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    1. There wasn’t a referral for me for my MRI so good job I chased up. I know mammograms certainly have their place in breast cancer screening and do pick up a lot of things but, no doubt like you, I just don’t trust the results on me. It was like a form of torture on the side I had surgery too 😦 All the best for your upcoming scans and results. I’ve added ‘chemo curls’ to my new vocabulary too!

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  3. Yeah I don’t trust mammograms either, and I’ve been chasing up a decision on MRI for months, I’ve had it verbally, but still nothing in writing! Chemo curls, I like it 🙂

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