I may be stable but I still need support and surveillance


cancer-patient-support

With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, ‘Stable‘ is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal.  The surveillance must continue in case of a recurrence.

It’s important to understand that ‘Stable‘ simply means the disease is “under control” with tests and scans showing the cancer hasn’t changed over time.

One of the disadvantages of ‘incurable but treatable‘ is that Quality of Life (QoL) can in many cases be compromised due to the consequences of cancer and /or treatment. However, if specialist treatment, surveillance and support are all in place, things can gradually be adjusted to a new and hopefully tolerable ‘normal’. 

I also believe patient expectations need to be managed although improvements are still possible.  In my own experience, however, this does not happen overnight. Patients must be willing to accept a new normal or status quo on the basis that things are never likely to be the same again. Many patients with chronic conditions will have minor irritants and Neuroendocrine Cancer patients are no exception in this regard. 

HOWEVER …….. The specialist view of ‘stable’ will be looking at tumour and hormone makers.  The patient is likely to have a much wider view of ‘stable’ and it will include ‘quality of life’ markers. 

So ….what is stable for me?

Looking at my medical documents, I was not really considered ‘stable’ by specialists until 2 years after diagnosis. The measure of that is in scans and markers.  Nothing has grown since 2012 although I have a thyroid lesion being tracked on watch and wait.  My key NET markers have been solidly in range since 2012.  Today, my on-going monthly treatments are well organised, I’m in touch with my specialists and undergo several surveillance checks beforehand every 6 months currently. I get regular/normal illnesses and those are logged in my diary to look for any clues or associations with anything else. In between consultations, I can call in for urgent help if need be. Irregularities of concern to my ‘stability’ are checked, referred to other specialists if necessary and treated.  I feel well, I look well (but you should see my insides ….). I think I’m on top of things.

I think the UK (for example) is very well serviced with district NET Centres across the country each with specialists in Neuroendocrine Cancer and most include a dedicated NET Specialist Nurse – some areas are better served than others. In my opinion, NET Nurses can prove invaluable in on-going care scenarios.  In fact, I was very pleased to see a NET Nurse attending and taking a greater role in my most recent MDT meetings.  I’m fairly certain other countries have similar setups.  Some countries may not be so fortunate and are struggling to get the right resources – I can see this on one or two ‘corporate’ Facebook and Twitter sites. Specialist NET Nurses are an extremely valuable commodity – they do brilliant work and we probably need more!  The same could be said for NET Specialist Dietitians who are key to providing quality of life improvements. In fact, I was delighted to see this recommendation at ENETS 2018 in Barcelona. 

recommend dietitians
More dietitians for NETs?

OK … I may be stable but I still need support!

However ……. my stability does NOT mean I’m complacent.  For minor issues, it’s always useful to talk to a medical professional, even on the telephone. I think of my GP (PCP) as a ‘virtual’ member of my Multi-Disciplinary Team (MDT) and I copy them into any important correspondence between myself and my Oncologist.  They are normally copied in coming the other way (if not I make sure they are). This is starting to return dividends. Whilst my GP is positioned to deal with most of my ‘irritants’, I still believe specialist assistance is required for many NET Cancer problems or any problem where there is potentially an overlap or risk of a connection. Being your own advocate is useful in these scenarios.  Patient-doctor communication is vital and I find it best to drive this myself. I’m lucky to have direct ‘as and when’ contact a specialist NET Nurse.  All NET patients should have the same.

The best advocate for you is YOU (or someone very close to you)

Although I still need constant surveillance, being stable allows me to focus on QoL and in particular trying to improve on my ‘normal’.  Whilst we are on that subject, did you hear the one about the constipated NET patient?  This article contains a summary of my attempts to gain a decent quality of life.

Although I read patient forums, I don’t necessarily rely on them a lot for my own issues. On sporadic one-off forum questions (…..and not forgetting that hundreds of symptom questions are related to ‘the gut’), the discussions can end up with many different and confusing answers. Plus there are so many patients who are at varying stages of their disease, use different types of healthcare systems, have had different treatments and have different types of NET, have other issues going on, it can end up as a tangled mess as people try to compare apples with pears. 

I will not compare myself to strangers on the internet
remember all patients are different

I like to do my own research as I want to be in control of my own QoL.  One of the most troublesome QoL issues for patients is diet and the digestive system generally (i.e. managing the gut). For many NET patients, particularly those who have had surgery and/or persisting syndrome, diet and nutrition is a  huge challenge as it can very often mimic other problems which can present with a wide range of ‘syndrome like’ symptoms such as fatigue, weight issues and even anxiety. More somatostatin analogues and other drugs might just be the wrong response in certain scenarios. I feel there is a huge gap in the follow-up treatment for people who suffer this as a consequence of their cancer. For example, and to the best of my knowledge, there is only a few dedicated and practicing Neuroendocrine specialist dietician in the whole of the UK (…..I’m willing to be corrected here). Some of you might be thinking that any dietician should be able to help? Although you would be correct to a certain extent, I personally do not believe this is the best or optimum solution. There are very specific issues with NET Cancer patients that are bespoke and complex to the point that conventional cancer diet practices may not fully apply. It’s not just about what you eat………..

NET Cancer patients need specialist dietary advice covering the whole spectrum from diet itself to the use of supplements where required, post-surgical advice, managing the long-term side effects of treatment, combatting and treating malabsorption and nutrient deficiencies caused by the complexities of their cancer or the consequences of their treatment. Personally, I think more resources and research in this area would be useful.

This gap is one of the reasons why I asked Tara Whyand (a dietician with specialist Neuroendocrine Cancer knowledge) to help me co-author a series of blogs to focus in on a few key areas.  I didn’t want to say what someone should or should not do, I wanted to say why this is an area to watch.  The ‘why‘ is important as it helps you in your efforts to distinguish the effects of a syndrome or a co-morbidity from the effects of your treatment (if applicable).  I find this knowledge helps me to think ‘outside the box’ rather than just accepting ‘it’s the syndrome.  I personally feel I’ve been able to harness this knowledge to improve my QoL.

Article 1 – Vitamin and Mineral Challenges

Article 2 – Malabsorption

Article 3 – Gut Health

Article 4 – Food for Thought

Article 5 – Pancreatic Enzyme Replacement Therapy (PERT) (includes a Q & A session with Tara Whyand)

The following blogs may complement this nutrition series:

The Diarrhea Jigsaw

The Constipated NET patient

Serotonin

I now take food with my pills

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!

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10 thoughts on “I may be stable but I still need support and surveillance

  1. Susan April 14, 2016 / 02:38

    Thank you Ronny for your thoughtfulness in your posts. I have trouble, like you, with many forums as they are not necessarily factual or helpful. We each have our own stage. This cancer is so varied that it is hard to compare what I have with someone else and vice versa. Professional & fact based research is a better source for me to be my own best advocate. You help with such information gathering.

    Liked by 1 person

    • ronnyallan April 15, 2016 / 13:14

      thanks for the kind words Susan. Some forums can be dangerous places! Some are really good though.

      Like

  2. crystaltipps24 February 26, 2016 / 19:10

    I like the comment about keeping your gp informed, something I think we should all aim to do if they are agreeable to it.

    Like

    • ronnyallan February 26, 2016 / 19:14

      I just make sure they get copies of letters. My GP has a scanning system and I quite often see my letters or specialists letters on the screen at appointments.

      Liked by 1 person

  3. Christine Craig June 20, 2015 / 10:21

    hi again Ronnie, you will fill a gap with this knowledge, diet is a problem for all of us. I just take a supermarket vitamin and mineral supplement to replace missing bits. I do wonder if it is enough and have totally failed in my efforts to find out. looking forward to your new work. regards Christine

    Liked by 1 person

    • ronnyallan June 20, 2015 / 10:33

      thanks. Focus of my blog series will not necessarily be on what we eat but the effects of it – moreover the effects our surgery and treatment can have (and is often confused with syndromes).

      Like

  4. cy June 17, 2015 / 20:51

    Agree totally that your moderate view is ideal. Thanks Ronny.

    Liked by 1 person

  5. jleigh June 17, 2015 / 16:47

    Looking forward to this series. You do a great job of piecing together the facts and i appreciate the moderate view your blogs have.

    Liked by 2 people

    • Ed June 18, 2015 / 12:30

      I agree as well. Moderation is good. Especially when we are all dealing with such extremes in life because of our disease. A calm moderate voice is always helpful. Thanks, Ronny!!!!

      Liked by 3 people

  6. Tony Reynolds June 17, 2015 / 16:06

    Reblogged this on Tony Reynolds Blog and commented:
    Thankfully, I have never had to suffer the effects of cancer. However, I have lost my Mother, Father and many friends to the disease and woould encourage anyone who is suffering from this or other serious ailments, along with their friends/families, to seriously consider reading the blogs Ronny produces on a regular basis. Would also ask that if you don’t fancy reading them, for whatever reason, you still consider pointing friends, family and colleagues to them. Everything Ronny writes is evidence based or on his personal experience that he supports. He has the ability to take complicated issues and break them down in a way that even I can undestand them. Many Thanks. Tony R

    Liked by 2 people

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