Cancer: How Much Information Do You Want?

When you hear the news that your loved one has been given a cancer diagnosis, your world temporarily stops. You want to know the ins and outs, the prognosis and what it all means. The time you must wait between scans and results can feel like a lifetime, and your thoughts naturally veer towards the worst-case scenario.

Photo by  Jon Tyson  on  Unsplash

Photo by Jon Tyson on Unsplash

However, how we deal with cancer now is very different to how we used to cope with it. In years gone by it was a word ushered as it evolved into a huge silent elephant in the room; nowadays, people are more open about it, and that is of great benefit to those who have cancer and the people who love them. There is a wealth of information online that can provide real support to you all (but make sure that the advice you take is from a reputable source!)

There are two camps – those that want more information about the diagnosis and those who don’t – and neither one is right; it boils down to personal choice. I am in the camp that wants information. For me, following my mother’s diagnosis of stage 3 pancreatic cancer, I wanted to know the details, the options and how best to support her. If you are sat on the fence with this, here is what I have found that talking about cancer openly:

  • Reduces anxiety

Photo by  James Hammond  on  Unsplash

Fear of the unknown is a phrase that we use in the everyday, but with a cancer diagnosis, the fear is very real, and the phrase carries more potency than usual. Cancer is not automatically a death sentence, and by understanding what is going on with your body and how the treatments offered will impact you, you no longer have the fear of the unknown. By being informed, you can stop your fears from escalating – you can transform the elephant into a mouse!

 

  • Gives you control

As mentioned, your thoughts initially swing towards the negative. Extra information helps to minimise the size of that elephant. By being armed with facts and figures, you can better understand which courses of action that needs to be taken. Rather than being lead, you are guided – the difference is subtle, but it gives you more control over the situation.

  • Helps you to make informed decisions

Part of being in control is being able to make informed decisions. The decision may be whether to have surgery if offered it, take part in a chemotherapy trial, or even to accept palliative treatment alone. If you have the information about the options available, and understand the implications of each, you will be able to choose the best treatment for the circumstances.

Photo by  Roman Kraft  on  Unsplash

Photo by Roman Kraft on Unsplash

  • Helps you all to get support

The support that is needed following a cancer diagnosis and during treatment is both physical and emotional, and by being able to talk freely about this journey, you will find that the burden diminishes. There are many other people that are experiencing the same as you and you can get all kinds of tips and hints about how to alleviate symptoms (yes, cow’s udder cream is great for soothing skin). Macmillan Cancer Support is a great website for you to use, you can get high-quality and up-to-date information, and access forums should you have any further queries or require further support.

Meeting the Oncologist

If you are supporting somebody through their diagnosis and treatment, even if they don’t want to know too much information, it can be valuable if you have done your homework, so that you have an understanding of what is being said.

When you meet with the Oncologist, be aware that while you both may hear the same conversation, you may comprehend the information very differently. If you are unsure about anything – ask!

If you are unsure about anything – ask! If the language being used is too technical and medical, just ask them to repeat it in layman’s terms, and make notes of what is being said.

  • Write a list of questions that you have (and leave space to fill in the answer!)

  • Write down key words of the diagnosis and treatment.

  • Ask for a copy of reports.

Dr Google

If you are like me, Dr Google will be very busy during this time. You need to be selective about the sources of information that you access, but you also need to compare like with like. On one occasion, my mother had found data that gave a very poor prognosis for people post Whipple surgery, but on further inspection, the research she had read had included people that had positive markers after the Pancreaticoduodenectomy and had secondary metastasises – which did not apply to her. Look out for discrepancies!

Dr Google has been beneficial to understand reasons why blood results may fluctuate. Rather than jumping to the gun that the cancer has spread, we have taken solace from identifying that there are other factors that influence the counts – reducing stress and worry until investigations have clarified the situation.

Be mindful too, that people are more inclined to write on forums when they are at crisis point, and so the language that they use will be emotive and passionate about their often-negative experiences –the successes haven’t needed to seek further support!

TIP: If you are looking for more treatment options, Cancer Research UK has a page for finding a clinical cancer trial. You can filter the trials by cancer type, trial type and geographical location. Click here for more information.

What do you think about accessing further information? Is knowledge power, or would you rather not know? It’s such a personal choice, so are there any other reasons you have for your decision?