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

Final chemo, CT and heart scan

I had so many mixed feelings from my appointments at the hospital last week. I was feeling so, so relieved that the final chemotherapy infusion was going in. I sure was glad to be climbing that last hurdle of a very long and tiring race. When I started my chemo back at the beginning of August, this time in November seemed like such a long time away and actually the latter part of my treatment did seem to go by much more quickly.

chemo
At last, the final chemo!

I also had my first radiotherapy appointment where I had a CT scan and was measured for my forthcoming treatments. Pats and I both went into the scanning room and the radiologist explained to us everything that was going to happen. There was a male student in the room as well and she asked if I would mind him being part of the planning session or to just observe. To be honest I didn’t feel particularly comfortable with him being there, but I didn’t want to hamper his learning opportunity either so very shyly agreed for him to be present. Pats then left the room and I went into the cubicle to get undressed.

I knew the scan wasn’t going to be painful but I began to get upset standing there with my blue bit of paper covering my modesty (not a large piece I might add!).  I climbed onto the bed and they placed both my arms in stirrups either side of me. This in itself was a strange experience and I felt like I was about to be tortured. As hard as I tried, I just couldn’t stop the tears from rolling and both the nurses could see I was upset so went and got Pats who was waiting for me outside. He came and held my hand whilst they took their measurements of me. I felt rather silly crying, but I can’t imagine I’m the only one who has. It just brings such an enormity to the whole thing and magnifies and intensifies everything that’s going on.

After the radiographers and Pats left the room, I lay there on my own splayed out on the bed as it began to move in and out of the big ‘polo mint’ machine. It’s over pretty quickly and I was desperately trying to take my mind off the whole experience by thinking of all the good times I’ve had in my life.

CTplanner

After a few minutes I was rejoined by both nurses and Pats and then had small permanent tattoo ink markers placed on three places – one in the middle of my chest and another one on each side. It was done with a small needle and wasn’t too painful at all and they are actually smaller than I thought they would be.

We left the radio department and went straight to the chemo day unit for my very last treatment. I was given the choice of being in the open area or in a separate room. I figured it would be nice to have a separate room, a) to compose myself after the previous appointment and b) well, just because we could!

The final part of the day was to have my Picc line removed. As I hadn’t had any infections or stints in hospital with the chemo, my oncologist said I would be okay to have it out after the last treatment. Wow – getting my arm back at last! They’d said that I wouldn’t feel it coming out but naturally I was apprehensive about them tugging a plastic tube out of my vein! I felt a slight tugging sensation and was amazed to see the line coming out, but had to look away as it was actually quite gross to see. Then it stopped and wouldn’t come out any further. The muscle in my arm had gone into spasm so was effectively clenching onto the line so it wouldn’t come out. The nurse put a heat pad on for 15 minutes and luckily this relaxed the muscle and the rest of it came out. Yey, a little bit of me back. I had to to wear a plaster on it for the following two days but have now had the pleasure of standing under a shower instead of having daily baths waving my hand in the air trying not get it wet! Oh it’s the little things in life : )

Our third and final trip to the hospital that week was to have my echocardiogram (heart scan). Because I am HER2+ I need to have Herceptin® (trastuzumab), an adjuvent targeted therapy which will reduce the risk of the cancer coming back and will comprise of three-weekly injections for a period of a year.

Because there is a low risk that Herceptin can cause heart damage they take a scan to check how well the heart is functioning. An echocardiogram uses sound waves to take detailed pictures of the heart as it pumps blood. I didn’t feel anything and no radiation is involved for this test. I layed on my side whilst the nurse moved a device over my chest, ribs and neck. She said that everything looked normal which was good to hear! They will continue to take regular scans of my heart throughout the treatment to detect any sign of heart damage.

My first Herceptin injection and radiotherapy appointment is on 8th December. I need to have 19 radio sessions all together, 15 to the whole breast area and four booster ones to the tumour/scar site. I do get Christmas Day off and a couple of days afterwards so a breather from going back and forwards to the hospital. It’s not quite the Christmas I had imagined, but hey ho I will make the best of it!

I’ve heard mixed stories from ladies who have had radiotherapy, some have not felt many side effects, some have been severely fatigued and also suffered bad burning.  I’d be lying if I said I wasn’t nervous about being nuked, but I sincerely hope it will be as kind to me as possible.