Fear of Recurrence: Part One

I’m feeling well.

I suspect that some degree of peripheral neuropathy is now a permanent thing. It’s been twelve months since chemotherapy and my doctor’s advice is that whatever I have now is probably part of my ‘new normal’. I’ve also got arthritic pain in my hips and one side of my collarbone. I’m 53 in a few weeks and I notice that all of my friends in my age group have their own list of aches and pains. Bad backs, dodgy knees, sexual dysfunction, migraines, digestive problems…….it seems to me that I’m no different to any of my friends. We all have something that keeps us a few steps back from being totally well. Age can do that.

But apart from some niggling lower back pain and numbness in my hands, I’m feeling well.

I saw my oncologist last week for the first time in a year. She’s been on maternity leave and although my surgeon has kept her up to date with what’s happening, she wanted me to go right back to the first surgery and explain everything to her. The radiation, the one year scans with suspicious cells, the second ‘breast conserving’ surgery, the discovery of invasive cancer and then the bilateral mastectomy.

If you’ve been following this blog you’ll recall that there was an issue over the marker clip being left in after the first surgery. It had been placed between four tumours arranged in a diamond pattern. It would not have been possible to remove the whole of the tumour bed without the clip (unless it had moved – but there would have been a hole where it had been). My surgeon has already admitted that leaving the clip behind was a mistake. The pathology from the second surgery found one of the dead tumours so clearly part of the tumour bed was left behind after the first surgery.

My oncologist thinks that my ‘recurrence’ was the original cancer. It was left behind.

This makes sense. There was DCIS (ductal carcinoma in situ) under the one remaining tumour and I don’t think it’s unreasonable that there might have also been DCIS under any or all of the other three tumours.

Of course my first thought was, “Did I really need a mastectomy?”

Actually, my first thought was, “SHIT!!! Did I REALLY need a mastectomy????????”

I spent a day frenetically moving mulch and contemplating that possibility. I felt angry and distressed. I don’t like being someone’s mistake.

Then I realised that leaving those cells behind might have been the best possible thing that could have happened. They survived chemotherapy and radiation. This cancer is resistant to both! Clearly my chances of recurrence were extremely high. Figuring out where cancer comes from in the first place is still the subject of research and theorising, but one possibility for me is that some of the stem cells in my breast tissue were manufacturing cancerous cells. No breast tissue means no breast stem cells.

It’s also possible that a mutated cell from some other part of my body has lodged in the breast tissue, recruited a blood supply and grown tumours as a consequence. Researchers have established that all of us have potentially cancerous cells circulating our bodies all of the time. When I say ‘all of us’ I mean every human on the planet, not just those of us diagnosed with cancer. Most of the time there’s a natural process that causes those damaged cells to die but some of the time they manage to ‘trick’ the body into treating them like an essential cell and then they recruit a blood supply in much the same way that an embryo does.

This is the reason why chemotherapy is so effective against triple negative breast cancer. It targets all fast growing cells. That’s why our hair falls out and our fingernails become damaged. It’s why we need to take special care of our skin and our gut when we’re having treatment. Microscopic cells get wiped out, wherever they are, and doctors can be sure the treatment is working because they can observe the reaction of the tumours to treatment. Recent research into triple negative breast cancer has shown that having chemotherapy first will greatly improve survival chances. If you’re lucky enough to get a pathologically complete response (all your tumours die during chemo) then your odds take a big step up.

Curiously, having a mastectomy first actually decreases long term survival. Nobody has figured out why but it has been observed that triple negative breast cancer seems to recur in scar tissue. It also seems likely that the cancerous ‘seed’ cells are being made somewhere else in the body or that even a few remaining breast cells can regenerate the cancer because otherwise a mastectomy would be a cure.

The difficulty for me is that I’ve now entered the land beyond statistics. My case is so unusual that there’s no data set for it. There is not a sub-group of women that had chemotherapy with a PARTIAL response followed by surgery that PARTIALLY removed the tumour bed, followed by what might have been recurrence OR remnant original cancer.

My oncologist asked me if further chemotherapy was discussed with me. The recommendation from the multi-diciplinary team (the same one that unanimously recommended mastectomy) was that a platinum based chemotherapy be considered. At the time of my appointment I couldn’t remember being offered it but with hindsight I can recall my surgeon saying she’d discussed it with my oncologist who had recommended against it. This is one of many reminders that doctors have lots of patients and it can be difficult for them to remember all of the details of every single case. We need to be responsible for managing our own health.

Having checked my pathology and noted that there was no sign of cancer in the tissue removed during the mastectomy my oncologist seemed to lean slightly towards not giving me any further chemotherapy. You would think I’d be happy with this decision but the platinum based drugs have been showing great results in treating triple negative breast cancer so I’m anxious about whether or not this is the right decision. I’ve left a message for her to call me either today or tomorrow, just so I can be sure we’ve made the right decision. The question I want to ask is “Why did you decide NOT to give me the platinum?” or perhaps, “If you had my medical history, would you want the platinum?”

Perhaps I should seek a second opinion from the oncologist that recommended the platinum.

I am feeling well and my friends tell me I’m looking well. Things are getting ‘back to normal’ by which I mean my health is no longer the main topic of conversation. This is a good thing. I am not my disease.

But I now regularly find myself momentarily horrified by the thought that the cancer is going to come back. Any slight ache or pain becomes a source of concern. Is that headache, that pain in my neck, that ache around my liver, that burning feeling in my bones, a symptom of metastatic disease?

Some nights I lay in bed and obsessively poke and prod my body in pursuit of anything lumpy. Or I see an ad for a concert or show that won’t be on until later next year, and without effort my brain asks if I’ll be here to use the tickets. When the National Breast Cancer Foundation decided to make this year’s Breast Cancer Month all about people with stage four (terminal) breast cancer I found myself unable to read the advice and stories about women in palliative care. I don’t fear death. It’s the manner of my dying that haunts me.

So I am looking and feeling well……..and secretly terrified! I know I share this with everyone that’s ever survived cancer. Fear of recurrence is the subject of booklets, workshops and online forums. A lot of what they advise is already part of my routine. Meditation, yoga, eating well and trying use reasoning or distraction to deal with negative thoughts. Here’s the problem I have with a lot of what’s recommended. A distracted life is a life half lived. Spending my time cycling through negative thoughts about fears of a horrible death and anything to take my mind off it requires effort. It also sucks the life out of things I enjoy.

Let me give you an example. I love gardening. I can happily spend a whole day weeding, mulching and planting but if my motivation for doing that is to avoid negative thoughts then it becomes a completely different activity. Instead of being something I enjoy for its own sake, it now becomes ‘busyness’ to occupy my mind. It’s also not a very effective way of dealing with fear. Yes, there will be stretches of time when the busyness trumps the fear, but the fear always comes back. It’s tiring. Something wonderful and enjoyable becomes soul destroying.

The other strategy familiar to many people will be the use of evidence to argue against the fear. This one is particularly appealing to me, having worked as a police detective for many years. There are two problems with arguing with myself. Firstly, I’m inclined to become a bully. My internal language can easily slip into berating myself for being ‘weak’ or ‘stupid’. Secondly, the evidence that I might be dealing with cancer in the future is unfortunately strong. Going in search of evidence can leave me more frightened than I was when I started.

Some people recommend facing your fears, confronting them, describing them and staring them in the eye. This strategy reminds me of the stone angels in Dr Who. You can hold them still as long as you don’t blink!

It’s true that yoga and meditation both help me to calm myself down. They both provide me with a kind of respite from the fear of recurrence. But they don’t get rid of it.

Recently I learnt about something called ‘Acceptance Commitment Therapy’ (practitioners call it ‘act’). I have found it to be so helpful in dealing with my fears that I’ve been recommending it to other people. I’ve had a few people ask me to write about how I’m using it to deal with fear of recurrence so that’s going to be the subject of this blog for the next few posts.

I am not a therapist, psychologist or counsellor. I’m just a cancer survivor writing about my own experiences so the next few posts will be about my own application of ACT and how it’s helped me.

If fear of recurrence, depression or post traumatic stress disorder is crippling you then I strongly recommend you get professional help. Here’s a website about Acceptance Commitment Therapy that also includes a list of trained professionals in Australia. If you’re overseas then I recommend you google Acceptance Commitment Therapy and locate someone close to you.

http://www.actmindfully.com.au/?gclid=Cj0KEQiAneujBRDcvL6f5uybhdABEiQA_ojMgm2tf_fLhJ8apU0cLDF2tx2OlZNx-3Qxv62V-uOVnH0aAqSE8P8HAQ

You might also like to read Russ Harris’s book ‘The Reality Slap’ which specifically deals with applying ACT to a life crisis. His first book ‘The Happiness Trap’ is also a great introduction to ACT and explains why he has some issues with the whole ‘positive psychology’ movement. Nobody is happy all the time. We’re not made that way.

If you’d like to join me on my own exploration of ACT then here’s the first thing you need to know. ACT requires you to act. I have loved the cello my whole life. Great cello music can move me to tears. I know about the history of the cello, the different styles of playing it and how different kinds of wood are used to give it that beautiful tone. I know about the difference between metal stings and gut strings and what makes a good bow. None of this knowledge enabled me to play the cello. To do that I had to be humble enough to be really bad at it for long enough to learn how to do it well enough to create a beautiful sound.

ACT is like learning a musical instrument, or learning to drive. You need to practice it to be good at it.

If you’d like to play along with me then between now and my next post, notice what you do with your own fears. If you’re also a cancer survivor you’ll probably be using some of the same strategies that I’ve been using. Even if cancer isn’t your big fear there is probably something else that intrudes upon your life on a regular basis. Our mind’s ability to forecast and imagine danger is part of our survival. Perhaps we had ancestors that were optimistic all the time but they probably got eaten the first time they wandered joyfully across the savannah, ignoring the twitch in the grass.

So regardless of your cancer status, your mind, like mine, almost certainly tries to frighten you on a fairly regular basis. When this happens write down what the fear was and what strategy you used to deal with it. I’ll be back next week with some ideas for finding better ways to live a fulfilling, meaningful life in spite of our fears.

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