Patient stories are key to any awareness campaign. Nothing like a human being standing up and letting you know about their experience. Many are positive examples of how they are overcoming their trials and tribulations, others tell stories of a struggle. They all have different styles, some are the ‘kick ass’ type stories, some are just thankful, some are reflective – all of them are perfectly acceptable. I normally like to place myself somewhere in the middle with phrases like “I’m still here“, although I can veer left and right when the mood takes me!
Because of my social media footprint, I get a lot of private messages from people across the globe. Many are from people who have no wish to go public and that’s fine. Many are from people who value my opinion and that’s humbling. On forums, you can get 50 answers (all well meaning ones), with me you normally only get one (even if it’s a “I don’t know”). Most are fairly easy to answer, just a link to something or asking for one of my articles they can’t seem to find. Some are a bit trickier but I get there in the end. Some are pretty worrying and really difficult to answer. And nearly all of them amplify something we already know ……. despite some tremendous medical advances, there’s still a lot of unmet needs for Neuroendocrine Cancer patients, in particular access to NET specialists, access to the best and latest proven treatments and follow-up support for those affected by their experience (physical and mental). I’m talking in a global sense including countries perceived to be advanced in medical terms.
Take Patient A for example. This patient has a classic well differentiated Small Intestinal NET (Si NET) with lymph node metastasis. That resulted in fairly complex abdominal surgery that many of us will have had (including myself). For the past year, this patient has struggled with no follow on support, no dietary advice and has been left alone. This patient told me he is actually receiving his follow on advice from my blog site. This patient is also struggling on the emotional side because people say he looks rather well and have commented that he must have been wrongly diagnosed but at least is now “cured“.
Patient ‘B’ is similar. This patient has had surgery (the surgeon got everything apparently ….) but has been declared non-syndromic on the basis there is no diarrhea. However, there is flushing, joint paint, general abdominal issues, weight loss, headaches, fatigue, dehydration and chronic constipation. It took this patient 6 months to find out about a local NET advocate organisation and 10 months to find out there was access to a dietitian.
Patient ‘C’ is worrying. In this example I was contacted and asked about surveillance intervals as it was noticed I was having regular scans. What I found was someone who had a metastatic midgut NET and not had any surveillance for 3 years (including tumour/hormone marker checks and Echocardiograms). This is despite an advanced healthcare system and oodles of availability. This patient is now seeing a NET specialist.
Patient ‘D’ had a horrendous experience. This patient was treated as a bowel cancer case when they had a low-grade classic Si NET …… surgery and then classic bowel adenocarcinoma chemo. Now, it might be that was the only treatment modality available in this patient’s country but it’s a worrying example of the extent of the unmet needs for NET patients in the country concerned.
Patient E is so shocking, I wrote an entire article about this case. Click here to read it.
Patient F has a similar story to patient E. Click here to read it.
I could go on with many other examples and I might expand this post downstream.
One thing is very clear to me, we need a new paradigm in international advocacy and we need to start focusing more on these support issues. As the number of people living with cancer rises, the requirement for post diagnostic support also rises. Even those who are ‘stable’ need support. One thing is for sure, the shock effect of what people tell me never wears off because I know there are more shocking stories still to hear.
7 thoughts on “The shock effect never wears off”
I always look forward to your new entries, and this one brought tears to my eyes. I believe I would fall into that “stable” category, but with every scan or MRI, I am always waiting for the “other shoe to drop.” I want to help others, but feel I know so very, very little. THANK YOU!
thanks for reading. Stick with me and I can hopefully increase your knowledge level. I post more on my Facebook sites
And I read it all!!! 🙂
As always, thought provoking.I love your blog.
Re your last comment ‘even stable patients need support’. I would ask, is this disease ever ‘stable’? Taken over it’s lifetime, you have surgery and then think you are ‘stable’, then the next chapter opens……then the next. And each time, in-between, you think you are stable.
One last question; in the examples above, were these patients in UK or another country?
Always an interesting read. Thankyou Ronny.
Yes I think so, if your tumor markers are in normal range and remaining tumors are not progressive, then I think it’s right to call that stable. In terms of syndrome, if there is evidence that symptoms experienced are caused by the side effects of treatment rather than a syndrome (syndrome markers normal in range) then yes that is also stable. Surveillance is key to catch anything which puts that stability at risk. Also, people need help with the side effects of treatment, e.g. treatment induced diarrhea. That is what I meant in the article in that many people need support with managing both tumor and syndrome related events (surveillance) and with the consequences of the cancer (physical and mental). The community and patient advocate organisations seem too busy sharing pictures of black and white striped animals when that time could be devoted to campaigning for more support of the issues I’m raising.
Thank you for what you are doing to help other patients. I spend hours upon hours a day helping other patients with my rare SDHB Deficient Gist cancer because again there is not enough educated professionals and as patients I can share my stories and my links to articles that no one else seems to be doing. I’m following your journey because although my tumor is not a NET the tumors my father died of from the same SDHB mutation were neuroendocrine and I could get that type of tumor as well. And there are no “cures” “chemos” for my type of tumor and we are such a small subset that I have to help others. My son could inherit my Gist or my dad’s Paras . . . I’m also trying to help one patient at a time while educating the oncologists who should be thinking a little more outside the box.