Home » Living with Neuroendocrine Cancer » Living with Neuroendocrine Cancer – 7 tips for conquering fear

Living with Neuroendocrine Cancer – 7 tips for conquering fear

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7 tips for conquering fear

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 causing a lot of damage but without a grand announcement.

Stabilised

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.

I may be stable but I still need support and surveillance!

But I haven’t really been left alone, I have meetings with my specialists every 6 months plus routine 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 the whole story.

I’m in tune with my body

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.

Sorting out the symptoms

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 2017 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, after seeing a physiotherapist, things improved. 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 6 years.

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. For the incidents I highlighted above, the fear that these things were related to cancer growth or recurrence did go through my mind.

Fear can actually be a side effect of 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 7 tips:

  1. 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 future. 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 8 years with an incurable metastatic cancer, I’m still here and continue to be heartened by comments such as these here (click here).
  2. Accept that your road will probably not be straight and smooth.  There will be bumps and bends and you will need to deal with them as and when they arise.  Don’t try to second guess what the bumps and bends might be and then worry in case they happen. No-one really knows for sure and they might not happen.
  3. 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), or an upcoming treatment. 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 including upcoming treatment, it’s all about what I said above, education, risk management and communication with your medical team ….. put yourself in control. I also have great sympathy for younger patients and those with young dependent children. I can’t put myself in their shoes and all I can suggest is that these tips are still relevant in some way.
  4. 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!
  5. 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!
  6. 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.  It took me over 3 years to become more relaxed about my own future.
  7. 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.

If you think your fear of recurrence or relapse is unmanageable, I strongly encourage you to talk with your doctor or a counseller.

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

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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15 Comments

  1. Bethany says:

    Whenever I read your blog posts, I feel like I’m reading my story … mostly. It’s been 6 and 4 years for removal of two tumors. They were both the silent type.

    The first got so big it created havoc on the organs around it, causing an internal bleed … thankfully, I guess. The occurrence of the second one -no symptoms, and kept hearing my levels are fine … right up to the last test before the second surgery. That raises the fear factor by multitudes when i have random or recurring pain. And test results where my doctors say “it looks fine” does little to reassure.

    I keep going as if all is well. Then when pain strikes .. the cycle of “aaaahh! it’s baaaaaack” to “”I’m ok to “let’s make an appointment, just in case”, to “What if it’s another version of these tumors … is that possible?” to “Stop, you are ok”. to. “Well, maybe.” And then I just keep on with my life.

    A move to another state away from the providers I went through all that with, doesn’t help. I inform, and also wonder if doctors are aware of these tumors and looking at me wondering if I’m making it up. I know it’s come a long way to educate the medical providers, but I still wonder, since so many lay people have not heard of it. I wondered at first if I was in some kind of surreal dream and making it all up.

    It took and still sometimes takes an effort to admit I have? cancer? They are both removed, with no medicine treatment … so do I have it? Or did I survive it? I usually say I had/have nueroendocrine tumors that were metastatic, but removed. Kind of a long answer.

    Then, I think … I just need to go ride a bike or play the drum. And life starts to get normal again. Kind of. 🙂

    Thanks for your blog.

    Liked by 1 person

  2. Kelly says:

    “Could that be my PNET?” That’s a common worry for me as well. I’ve been taking Lanreotide for almost a year. Seems to be a roller coaster for me, but I’m grateful to be doing something to stop or slow reoccurance. Every morning I wake up with pain under my right rib cage. I think, is that where my liver would be hurting if it spread there? In the afternoon I might get short of breath- is it in my lungs now? At night, it’s my neck, back, hip, and behind my knee- is this a reaction to my injection? Egads, my lymph odes are huge- cancer? These thoughts happen with the 1st moment of pain, but I do my best to push through, clear my mind, and just live. It’s discouraging to go to my doctors with the same symptoms over and over and not get relief, but hey, no new tumors is great news. Some days it’s easy to be happy with just no newbies, while others are a fight against the haunting feeling that my cancer is growing. I’m lucky I suppose to still have a seat on this roller coaster.
    Ouch, my hip!

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  3. Terry says:

    I just returned from Mayo Clinic. I have been doctoring out of there for carcinoid cancer. My scans now show that the carcinoid cancer in the liver has spread to the pancreas. And the carcinoid cancer in my collarbone has spread to my upper and lower spine, pelvic bone, and both femurs in my legs. I am starting Lanreotide. However, I am SCARED! I have not found much online regarding metastasis to the bones. What I see has not been very encouraging or hopeful. Is there anyone out there who is dealing with this and getting some hopeful news??? Or am I looking at a pretty dim picture soon. I just want to cry…


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  4. Diane says:

    Thanks Ron, I will keep this in mind when I start thinking too much, very good article, 👍
    Keep up the good work 🥂❤

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  5. Deanna Vickery, Mrs says:

    It is too easy, is it not, with any recurrent ache or pain, to immediately think “is it….” I have intermittant, recurrent pain under my right rib. Mentioned it to my consultant last year who said nothing untoward on the scan. Having looked this up – as we do – apparently many people have intermittant pain here after gall-bladder surgery. Strange that there’s no explanation though. Scar tissue? Who knows…….but it explains your thinking in that, we always tend to think the worst. Thank you.

    Liked by 1 person

  6. Susan Pfister says:

    Hi Ronny
    I needed to read this blog now. My husband is not well at the moment. I’m actually writing this post from his hospital room. He was diagnosed with high grade Neuroendocrine lung cancer last October. Since then he’s had chemo, chest radiation and just recently finish prophylactic brain radiation. For the past couple of weeks he’s had very bad stomach pains. He’s had every GI cocktail of drugs there is and nothing worked. He can’t eat now it literally hurts his stomach. Took him to the ER yesterday, he was admitted. He’s scheduled for an endoscopy tomorrow. The pain is so intense he’s on morphine every 4 hours. The GI doctor seemed concerned. I’m worried 😔


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    • Ronny Allan says:

      Sorry to hear your news Susan. High grade is a bigger challenge than I and many others had. He’s not long out of diagnosis and has had a lot of treatment which is bound produce side effects. He’s in the right place though and I wish him well. I’m really hoping they work out what the problem is and are able to provide some relief and I think I can speak for my community of thousands when I say this. After my major surgery, I was comforted to find my wife holding my hand when I woke up. I’m sure you’ll do the same 💙

      Like

  7. Thank you for a great post Ronny. My liver/rib tumours are stable but am getting some weird symptoms lately. Also suffer from lower back pain, right hip pain and left knee pain. All sortsvof thoughts go through head at times. Your blog is very good.


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  8. I think that focussing on your wellness makes a big difference, and is a major help coping with all the other points. Great blog Ronny😃👍

    Liked by 1 person

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