There is a tricky line to walk when interacting with people who have cancer. It can be hard to know what to say and what to do to try and help that person, but generally, others do want to help, so they will take steps to do so. I want to write about my experience with a particular form of help that has been really counterproductive for me. Not only am I looking to write about my experience, but I also want to draw a personal boundary for myself and people reading.
Before I start, I want to emphasise that this is not a slight against any individuals or a criticism of anyone’s past actions. I understand that every individual who has engaged in this behaviour has done so with sincere intentions and never out of any malice. I hope by writing this that I will help others understand why there is a problem and how they can not feed into it in the future.
The issue is this: sending news articles. What sounds like an innocent, if not actually a thoughtful thing to do, can actually be highly damaging. For my cancer in particular, which is pancreatic cancer, there is seldom positive rhetoric around it. I have spoken about this in other posts, such as The 1%. It is rare that articles about pancreatic cancer are filled with positive news, even where the overall news is positive. With these articles, they always need to summarise or contextualise the source ‘issue’. Unfortunately, that is frequently bad news concerning pancreatic cancer. Take this article, for example. From the title of the article, ‘New Drug Blocks Pancreatic Cancer Growth in Mice, Study Finds’, you would assume that people with pancreatic cancer would welcome the article and its findings. Consider the below paragraph, copied directly from the article, to emphasise the point.
“I’ve seen patients who respond to therapy for a while, and then the disease takes off because the cancer becomes smart—it blocks chemotherapy from working,” Pandol said. “Metavert targets that action.”
New Drug Blocks Pancreatic Cancer Growth in Mice, Study Finds – Cedars Sinai, September 25 2018
Although the main points from the article may be positive, there is always some contextual element in there that is extremely not positive for someone currently undergoing treatment. I have found this with nearly every article that has been sent to me so far. Although I am happy to read anything about developments in treatments etc, those things are long term solutions that I am unlikely to benefit from in my situation. The thing that sticks out to me far more in these articles is the shortcomings of the current treatment methods, as opposed to the potential positives of future treatments. I do appreciate that the parts of these articles that stick out to someone who does not have pancreatic cancer may be different, focusing instead on the positives being outlined. I ask you to put yourself in someone like my shoes and re-read the article. Try and think how it would feel to read some of these things as someone currently undergoing treatment for the cancer. What you’ll likely find are scary statistics and intimidating jargon.
To demonstrate the point further, here are a few quotes from articles that have been sent to me by friends and family, some by multiple people. I have not put the sources in as I do not want any individuals to feel bad if it is an article they sent to me, but you can easily find them by Googling the quote.
“After her diagnosis, Laura was put on chemotherapy but said that it didn’t work for her and instead of bringing the tumour down, her cancer spread to her lymph nodes.”
“Only about 20 per cent of pancreatic patients are eligible for surgery and the prognosis for inoperable pancreatic cancer is especially poor.”
“The problem is that, while a number of patients now see their tumors stabilise or shrink, the benefits of chemotherapy are very short lived. It often extends patients’ lives six months to a year, but way too rarely do we see the three-plus years of extension in survival that people would, at a minimum, hope for.”
Now, I hope I don’t have to explain why these things are not good to read for a person who is on chemotherapy, fighting pancreatic cancer and hoping to eventually receive surgery/survive cancer. Although the overall news in an article may be good, it only takes a single sentence, such as any of the above, to completely change the message of the article. I won’t walk away from the article primarily thinking about a prospective treatment that may end up being useful, I’ll be focusing on the part that tells me my chemotherapy isn’t going to work, and that the cancer may spread anyway in spite of the drugs. Or that the overall survival rate is very low and that few people survive past the 10-year mark. Of course, many of these things are true, and it is not necessarily better to be ignorant of them. I have found, though, that it is also not good to dwell on and intimidate yourself with such details. They are, after all, mainly statistics, or based on a wider story that is not told in the articles themselves. It is very hard to get the full picture from any summary sentence or statistic. So you find yourself asking, is it really helpful to dwell on such details?
Don’t get me wrong, though, I do empathise with people who fall into the trap of sending such articles. I do the exact same thing to myself. Just this morning I found myself reading an article on the BBC titled ‘Stool tests might help spot early pancreatic cancer’. This article actually didn’t contain anything too shocking or offensive, apart from perhaps the following:
Currently, fewer than one in 20 of those with the most common form – ductal adenocarcinoma – will survive for five years or more. Earlier detection could improve those odds.
Even this, though, is fairly mundane in the context of pancreatic cancer. You quickly become accustomed to reading these types of facts if you are dealing with the ailment; it isn’t a sexy cancer to have, with articles regularly discussing toilet habits and low survival rates (written with plenty of facetiousness that I hope is very evident – no cancer can really be described as ‘sexy’). The main problem was the related article I then clicked onto – ‘Bristol teen who lost mum to pancreatic cancer urges awareness’. Of course, the problem is not the article. It is about a teenager who tragically lost her mum to pancreatic cancer at the extremely young age of 48, an important story that drives home the realities of this awful cancer. The article is very moving. There was one sentence that jumped off the screen at me, though, and hasn’t left my mind since:
Jo had a Whipple procedure – major surgery to remove the head of the pancreas – and underwent chemotherapy, but the cancer returned twice.
Now, I have read a fact before that I believe said there was a 75% reoccurrence rate with pancreatic cancer, meaning that in 75% of cases, the Whipple procedure is unsuccessful in ultimately getting rid of the cancer and keeping the cancer away. It doesn’t make it any better to read about these awful cases, though, in my position, especially as I await news as to whether or not the surgeons are willing to put me forward for the Whipple procedure. It does not mean that doing the surgery is not a lifeline, of course, even if it ultimately fails to save your life. This is just the dose of reality that you strive to avoid at this critical point in treatment; the type of information that just does not feel helpful. My point is this, I even do it to myself, I find articles and willingly read them knowing that they will likely offer up pieces of information that I do not want to read. So if I am guilty of doing it, I cannot blame others for falling into the same traps.
My ask, the ‘boundary’ I want to draw, is this. If you read an article that you feel has some information in it that you believe would be beneficial to pass on, please pass that information on. Paraphrase it in a message, or next time you see me, chat to me about it. Do not send an article to me and expect me to read it, because I won’t be opening them anymore. Upon reading the information you give me, I may ask you to send it to me, and that is, of course, fine, but please do not just send an article. I understand that your intentions are very unlikely to be sinister or negative, but I hope I have demonstrated why it is frequently not a useful thing to do. Please feel free to send me all the puppy pictures, memes and anything else you like, though, that is much more useful and scientifically proven to help kill cancer cells, probably (if you dig long and hard enough around the internet).
7 thoughts on “EXTRA! EXTRA! Read All About It!”
An important piece to write Dan. The reading around PC is never easy and the impact a word or phrase can have is massive. That’s why I do all the reading and leave Stewart to deal with what is an already heavy load.
For what it’s worth I’ve read many, many journals and articles. Yes, recurrence rate is high but an important part of that 75% is that it’s “up to 75%” not a confirmed number (there’s also a clinical trial looking at potential predictors) but comparing your/our situation to these articles is like comparing an apple to an orange. Neoadjuvant chemo is a huge plus, Folfirinox is a huge plus, your age is a huge plus and a whole host of other factors rondo with the surgery too.
In brutal honesty part of the reason 10yr survival is so low is in part due to the age most people are diagnosed – 70s/80s where comorbidity or ability to tolerate chemo are big factors.
I certainly wouldn’t insult your intelligence by telling you not to worry, or give you false assurances but for me it’s been about trying to be critical about stratifying data and I’ve found enough glimpses of hope to let me function.
Wishing you the very best for tomorrow xx
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Ah that is good to hear Jo; a lot of these statistics I just read somewhere and forget the source but they never leave my mind. I do try to remind myself that I don’t fully understand them so I can’t spend too much time worry about them.
Agree about the average age – I always remind myself of that. It feels horrible to take that as a positive when it negatively effects so many people but you have to take what you can in these circumstances. Thanks for the encouraging comment. Hope you and Stewart are well xx
Hi Dan I totally understand your feelings I for one don’t read any of these articles and friends and family don’t impart any info they have read on my cancer, maybe I have my head in the sand but all I need to know is what I can do to hold it at bay.Everyone is different and we don’t all suffer the same side effects of the chemo I once asked why all the questions as I had not had many of the problems others had and was told that once someone had reported a problem they then put it as a possible side effect so one size doesn’t fit all.All I can say is that I put my trust in my Oncologist team and stay positive.
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Hey Kate. Completely agree with you – it’s best to trust in the oncology team (I’m lucky enough to trust my wholeheartedly) and just press on with the day to day, whatever that is for you as an individual. Hope you’re well x
Great advice. There is so much that cancer muggles simply don’t consider, though I think they have the best intentions at heart– usually. 🙂 Thanks for sharing!
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Completely agree. I’d be reconsidering who my friends were if I thought it was ever out of malice! The phrase ‘cancer muggles’ tickled me 🙊
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I can’t take credit for the phrase, but I think it’s entertaining! I heard it from another survivor in a virtual cancer survivor group I’m a part of; great sense of humor in there. 🙂