Before I was diagnosed with cancer, my relationship with my health was fairly distant. I had minor irritants that seemed to come back now and then, nothing that was going to kill me. So I just put up with most of it and time was frequently a good healer. Occasionally, I would use medicine to speed up the healing or ask a doctor for advice. Even leading up to my diagnosis, this was my strategy despite some strange things going on. Luckily for me, the ‘system’ picked up something suspicious and I am where I am today. It’s amazing to think a cancer can grow inside you for years without a grand announcement.
Following diagnosis, I got quite a lot of attention in the first 2 or 3 years as I went through various surgical and other types of treatment, and I eventually earned the accolade of ‘stable’. Not cured, not in remission, not totally free of disease, just ‘stable‘. I guess I’m one of millions of people who now have a condition to live with for the rest of their life.
But I haven’t really been left alone, I have meetings with my specialists every 6 months plus surveillance testing. I have my GP (PCP) on tap via same day appointments. Thankfully, my tumours are slow growers and the biochemistry results that check their growth and function have been normal for some years now. I also have my specialists’ telephone numbers in the event of an emergency. The other great thing is that I’m lucky to have a direct line to a specialist Neuroendocrine Cancer Nurse for routine stuff. So I can sit back and relax, right? ……… Sounds good but not really.
I can honestly say I’ve never been more in tune with my body – there’s nothing like a cancer diagnosis to force you into a change of attitude. Not just about how you look after your body but learning how to read the signs and assess risk. However, the difficult area with this disease is that many of the side effects of treatment can mimic the symptoms of a recurrence or further spread and vice versa. And sometimes there can be no rhyme or rhythm (or logic) when patients experience these things. I once wrote about the “Neuroendocrine Cancer Jigsaw” where patients had pieces called Signs, Symptoms, Side Effects, Secondary Illnesses, Syndromes, Comorbidities and Coincidences. I also include the proverbial ‘missing piece’ as part of the jigsaw! However, I do think the ‘missing piece’ can sometimes be a metaphor for an instantly contactable NET expert or even some experience and education by the patient or a trusted advocate.
The comorbidity and coincidence pieces were belated add-ons to the list because sometimes it not all about the cancer – even cancer patients get regular diseases and ailments. The difficulty is working out if there is a connection or not. Take my current issue of back/hip/leg pain for example. I analysed all the timings in my diary (…top tip, keep a diary), there were no common connections to any particular occurrence or activity for all occurrences of the pain. I got some pain killers and decided to tough it out. After 14 days, I got fed up and saw my GP (PCP). I also ran it past my NET Specialist Nurse for assurance. After 22 days, I was still doing pain killers, waiting on a physiotherapy appointment; and doing back exercises at home. Why is my back pain suddenly a lot worse? My Calcium and Vitamin D are checked regularly and everything is in range. I’ve been receiving somatostatin analogues for over 6 years, so that might be a factor. I also reminded myself I’m no longer 21 (so did my NET Nurse!). Three months later, I’m seeing a physiotherapist and things are improving. However, I would be lying if it didn’t cross my mind that the problem could be bone metastasis. I studied the symptoms of bone metastasis and concluded that I have none of those other than the pain. I analysed my recent scan which said there were “no bony lesions”. I also registered the fact that my biochemistry results are rather good and have been for 5 years. Nonetheless, the fear factor is always there.
And then there were the 3 episodes of constipation where the possibility of a bowel obstruction floated around in my thoughts. However, time was once again a healer (along with some quick advice from my specialist NET Nurse!).
A couple of years ago, I thought I felt a lump on my right clavicle by the sternum. However, an MRI later dismissed it as nothing. Due to a piece of metal in my body, to be honest I was more scared about the MRI than the potential lump!
I always remember a great quote from Dr Eric Liu “Even NET Patients get regular illnesses“. He’s right. But it’s also right that people living with a long-term cancer can live in perpetual fear of a worsening state of health or a recurrence of the cancer.
I think all those living with cancer need to be alert and be proactive via education and communication with their medical team and GP (PCP). However, stopping yourself thinking that anything wrong with your body is somehow connected to the cancer, perhaps needs a different approach, particularly if you have a higher than average risk for recurrence. Fear of cancer relapse or recurrence, is said to be associated with poor quality of life, greater distress, lack of planning for the future, and greater healthcare utilisation. However, if you do suffer from this type of fear, you’re not alone. A recent study stated that 50 percent of all cancer survivors have moderate to high, or clinically significant, fear of cancer relapse, which could persist over the whole trajectory of their illness. Younger patients might have a bigger challenge on their hands as their future is uncertain. Patients with young children have an additional concern, that’s another fear area and a very difficult and tough one.
Psychological problems – another unmet need? Probably.
Conquering fear is difficult and no one size fits all. However, in the most general terms I would suggest the following 6 tips:
- Accept your diagnosis – you have cancer, it has the potential to change your life, you most likely need to make adjustments. But this is not to say you also accept that improvements cannot be made and things will not get better …. because they can. This is particularly important for those with incurable cancers needing treatment for the foreseeable. I accepted my situation very early on and I think that has been helpful in the long-term. Prognostic detail is a worrying thought and a difficult one. However, no-one really knows for sure. After 7 years, I’m still here and continue to be heartened by comments such as these here (click here).
- Identify your triggers – what is it that is triggering your thoughts? For me it’s more physical things like the lump, constipation and back pain. Other triggers for some might simply be an anniversary of a diagnosis or a treatment etc (or both). Think about how you can get past these obstacles. For example, on ‘cancerversaries’, plan to be doing something that’ll take your mind of it. For physical things, it’s all about what I said above, education, risk management and communication with your medical team ….. put yourself in control.
- Talk about it. Family, friends, other patients, your medical team. I don’t’ have any issues talking about it – writing posts in my blog is also really therapeutic for me (even this one!) and I hope others appreciate it too. Patient forums can be frighteningly good (but be careful, many can also be good at frightening and stressful). However, try not to become a ‘cybercondriac’ …… although talking to me is still allowed!
- Focus on Wellness. This is a huge area and it’s pretty much up to you to resolve. Yes, some willpower is involved and it includes both physical and mental wellness. For me I try to do exercise when I can (mostly walking) and I try to make sure I get 8 hours sleep (this is a fairly recent tactic which is really helping with fatigue). With diet, I try to avoid anything that greatly exacerbates the side effects of my treatment. Travelling, family and visiting places with fantastic views is most definitely a tonic for me (and that normally means exercise to get there). Anything that makes you relaxed!
- If all the above doesn’t work, perhaps professional counselling is required? There are specialists who work with cancer patients to help them accept that fear of recurrence/relapse is a normal part of the cancer experience. They can help you develop strategies to cope with your fears and move forward with your life.
- Be patient. Fear of your condition taking a downwards movement will probably never completely go away but perhaps as I said above, time is a healer and it has taken me over 3 years to become more relaxed about my own future.
If you think your fear of recurrence or relapse is unmanageable, I strongly encourage you to talk with your doctor.
Remember …….. “Googling your symptoms when you’re ill is the most efficient way to convince yourself you’re dying”. Anon
Stay well all
Thanks for reading
Ronny
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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!
