Coping with the fear of breast cancer recurrence
Two and a half years after my diagnosis, I’m 11 days post-op and I finally have implants. They certainly aren’t my old breasts but in comparison to my double mastectomied chest not long ago, they will do. I go for my two week follow-up on Monday. My surgeon will check my stitches, look at the way the implants are sitting and she will give me my pathology results from all of the tissue that she removed from my chest. I’m sure they are clear but I am always anxious to hear the results anyway. Many of us know this fear as ‘scanxiety’; it’s that perpetual fear that comes around every time we are waiting for the results from our latest scan, procedure or in this case, surgery. I mean, what if? What if it’s in the cards to have a recurrence at 29 years old? 26 wasn’t too young for my initial diagnosis (with no family history and no gene mutation), so 29 can’t be too young for a recurrence. Unfortunately, as we all know too well, cancer doesn’t discriminate against age (or sex, or race, or how many people you know or how much money you make).
I think when it comes to a recurrence, our pre-cancer lives are spent trusting our bodies and then when cancer develops it feels like a betrayal. Well, it is a betrayal; your body is meant to protect you and it has instead gone ahead and started harbouring something that can kill you. After you’ve gone through surgery and treatment, it takes a long time to trust your body again. I’m two years out of active treatment and I still don’t trust my body. Every ache makes me nervous, and although you want to be a ‘good patient’ and not complain about every pain, the alternative (not complaining) could result in much worse. How do you balance the fear with sanity?
It also concerns me that I am not being monitored all the time. And with having had a double mastectomy, as my oncologist would put it, I have no ‘mamms’ to ‘gram’ so that eliminates another form of screening. And, I think the cost of MRIs and the exposure to the radiation means it’s not a viable option for yearly checkups. I just have to either trust that my body isn’t betraying me or trust that I will notice the symptoms early enough to catch it. It seems primitive that there is no other way.
I think the concept of positivity is a struggle for many of us too. Everyone around us takes a huge sigh of relief that it’s ‘over’ meanwhile, after treatment ends, we realize that there are no cancer fighting agents in our body anymore (although for some of us who are ER+, Tamoxifen does slow any cancer that is trying to form) and we are left hoping that nothing else develops. We are supposed to be grateful that we survived but so many of us are fearful that it will return. I am a very positive person and I can turn almost any situation around but sometimes when I share some of my fears with family or friends, I run into ‘At Least’ – my nemesis. At Least always reminds me that I survived, that it was only Stage II, or the dreaded At Least, ‘you got a free boob job out of it.’ I don’t think I should always have to be positive about cancer and I should be able to be afraid without someone telling me how lucky I am.
And, something else that consumes a lot of my thought is, the first time around, you don’t know what to expect. Surgery is a foreign concept and chemotherapy was just a word before I was the one about to go through with it. The first time around, it was the ‘unknown’ that was so scary but a fear that I live with now is knowing how horrible removing my breasts was, how life-altering terrible chemo is, and how isolating cancer can be. The thought of going through it again is paralyzing. I sometimes quiver at the thought of getting another (fourth) PICC line or losing my hair and gaining the 33 chemo/steroid/managing-to-eat-anything-that-I-can-keep-down pounds back. That pain is constantly held over my head.
On top of worrying that my next diagnosis is just around the corner, survivor’s guilt is also something that I struggle with. Why did I survive and She didn’t? I’m sure our doctors had the same qualification. I’m sure I’m not a ‘better person’ than She was. It’s not like I ‘derserve’ to live more than She did. Why did I get to keep living, keep celebrating Christmas, get married, continue to travel while She died from the same disease? And not only do I have survivor’s guilt but when someone I know dies from breast cancer, my own mortality is thrown in my face and I’m painfully reminded that a recurrence is just one lump, one procedure or one doctor’s appointment away. This year has been full of recurrences for so many friends and I often wonder why it happened to them and not to me. If anything, their recurrences make me think it’s a matter of ‘when’ not ‘if’ for my own recurrence.
I have also learned that I can only worry about what I can control. Well, that’s not true, I can (and do) worry about everything, but I try to focus most of my energy on what I can control. I have spent a lot of the year looking at health and what that means to me. I think a lot of us feel pressure to change so much of what we eat; there are unwritten expectations to eat all organic, nothing out of microwave, and have no guilty pleasures, ever. We are worried (more than most) about exercise, how much and how often and many times we don’t know where to start (or are so bloody tired with residual treatment fatigue, Tamoxifen fatigue, or general cancer fatigue). I have found it helpful to give myself a seven day challenge to see if I can overcome an obstacle. As an ex-pop addict, I will tell you that on January 20th of last year, I tried to stop drinking pop for seven days, thinking that I could NEVER do it and almost a year later, I haven’t had a drop of it. It’s amazing how long seven days can last.
In terms of managing recurrence, time does help. It doesn’t fix anything but it does allow your mind to catch up with your thoughts and instead of cancer being the first thing I think about when I wake up, it’s more like the fifth or sixth and I’m assuming that in another few years it will be more like the eleventh or twelfth. I’ve spoken with women who are ten years out of treatment and they say that cancer crosses their minds on a weekly basis – I aspire to be like that. But, even if time is the best healer, what do we do in the interim? How do I get through the next 12 hours knowing that my fate is sitting in a filing cabinet in a beige coloured folder? What happens if they did find something? Even though it was more prevalent during active treatment, I still find myself holding my breath between appointments, procedures, results – Repeat. How do you cope with the Post Traumatic Stress Disorder of cancer when really nothing seems ‘post’ about it?
– Katie Evans