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The diagnosis of cancer as told by Carenity members

Jun 21, 2019

Our members affected by cancer have told the story of their diagnosis. Symptoms, emotions, examinations, relationships with their doctors.

Carenity survey of 112 cancer patients in the United Kingdom. 

The diagnosis of cancer as told by Carenity members

diagnostic-cancer
On average, patients waited less than a year to be diagnosed and the majority consulted 2 doctors before reaching their diagnosis.

The journey to being diagnosed with a condition can be long. Fortunately for patients suffering from cancer, the average journey to diagnosis is less than one year after showing symptoms. During this period, respondents said that they experienced different symptoms. A small percentage of respondents reported that they suffered from no symptoms at all so their diagnosis was more of a surprise. However, overall depending on the cancer, the symptoms ranged from different severities and locations but the majority of patients complained of the following: 

Blood in urine | Chronic pain  | Sore lump | Cough | Shortness of breath | Night sweats | Back ache | Loss of sex drive

 

Before the diagnosis: the impact of cancer

We asked our members what aspects of their daily life had been affected by these symptoms caused by cancer?

vie-intime-cancer    Love life - 54%

fatigue-chronique  Chronic fatigue - 45%

vie-familiale-cancer Family life - 45%

loisirs-cancer Hobbies and activities - 43%

vie-sociale-cancer Social life - 38%

impact-cancer-vie-pro Professional life - 34%

douleurs-cancer Chronic pain - 28%

Sadly for our members suffering from cancer, they found their love life to be the most impacted by the symptoms of their cancer before diagnosis. This can perhaps be connected with the decrease in sex drive and fatigue that was reported. Fortunately, chronic pain was the least felt impact by respondents. 

Before diagnosis, only 38% of patients did their own research on the Internet concerning their symptoms and they reported using websites such as the NHS, Mayo Clinic, McMillan Cancer Support and just inserting symptoms into Google. Several respondents mentioned that they knew the symptoms from family members having suffered from the same cancer or because they themselves were employed in the medical sector so they knew the signs.

Respondents to our survey were not enthusiastic about or practitioners in alternative medicines, with only 7% responding positively to having tried them. Those who did try alternative therapies used acupuncture, herbal medicines, turmeric tablets and cannabis.

Being diagnosed with Cancer: what you had to say

For many diseases, the road to being diagnosed is hindered with misdiagnosis. However, this was not the case for the majority of the respondants to our survey. Only 12% were subjected to a diagnosis error, which is good news for cancer patients as it means they can commence their therapy as soon as possible and have a much higher survival rate.

According to Carenity members, they were misdiagnosed with having generalised anxiety disorder, prostatitis, haemorrhoids, back pain, cystitis, kidney stones and fibromyalgia.  

The shock of the diagnosis  

Being diagnosed with cancer is a traumatic and life changing event. We asked respondents how they felt after being  For others, it was a shock and a traumatic event. How did Carenity patients react to their diagnosis?

choc-annonce-cancer It wasn’t a shock, I was expecting it - 35%

peur-cancer It was horrifying - 24%

soulagement-cancer  I didn’t feel anything in particular - 22% 

choc-annonce-cancer It was brutal - 21%

diagnostic-cancer-reaction It was a relief - 8%

Finding out that you have cancer can be a frightening event but surprisingly, 35% said they were expecting it while 7% of patients can’t remember how they felt at all. Unlike other chronic conditions, where getting a diagnosis can sometimes be met with relief, the majority of cancer respondents felt more horrified rather than relieved.

The role of doctors and healthcare professionals

The role of the healthcare professional making the diagnosis is key. Sometimes patients do not feel sufficiently listened to or informed about their condition. The good news is that the majority of Carenity members felt that their doctor took their time telling about their diagnosis whilst also being calm and emphatic. The main problem members found with their doctor was the feeling that they didn’t care and they were cold and distant delivering the diagnosis. However, the positives far outweighed the negatives for patients and their healthcare providers.

 The following statistics show how members felt their doctors handled the situation of relaying their diagnosis to them:

le médecin 

59% - The doctor was very calm

57% - The doctor took the time to explain

37%The doctor was very emphatic 

11%The doctor offered psychological support

ressenti négatif

12% - They were cold and distant

7%    - They were too fast explaining

6% -     They looked like they didn’t care 

5%    -  They used cold and scientific language

 

The patient's struggle when facing cancer

We asked our members how they felt emotionally after receiving their diagnosis, whether they felt determination or despair for their future medical journey. Many members responded having felt several emotions at once and this is what they had to say:

25% of patients felt relieved by the diagnosis but this was coupled with 58% feeling a great deal of anxiety. This anxiety was coupled with shock and surprise, according to 31% of respondents. 28% reported feeling lost, confused and alone, 14% felt anger about their diagnosis, 6% of patients had the sensation of being misunderstood whilst only 6% felt discouraged. 

Fortunately, 45% felt determined to fight the disease but only 9% had confidence for the future while 17% felt despair. 

How can diagnosing cancer be improved?

The most common problem that patients had when receiving their diagnosis was a lack of sensitivity. One member stated their doctor seemed “full of himself” while another patient felt “rushed” as sections of the ward were being closed as the news was being relayed. One respondent was harrowed by their experience as they felt like “a corpse” because they were being used as an example to train a student doctor.

Several respondents said a massive improvement that could be made would be having a doctor that they already know tell them the news because some of them “never saw the doctor before or after the diagnosis” which made the exchange feel cold and removed.

Many others wished they had received some sort of warning or instruction to bring a loved one with them. Receiving the news alone was very “traumatic” for one member and they felt very lost and confused while having to make their way back home by themselves afterwards.

However, overall the majority patients seemed satisfied with how they were told. They did want more “follow-up services and instruction” because shock can prevent the information about treatment and care being adequately digested.

 

And what is your story?
Let's share our experiences and that of our loved ones in the comments on this article to improve diagnosis of cancer!

avatar JosephineO

Author: JosephineO, Community Manager

Josephine is the Community Manager of the UK with a Master’s in Publishing. She is a strong believer in the power of words and strives to make Carenity UK a comforting, vibrant and informative community for both patients and their families.

Comments

on 6/24/19

After being virtually dismissed by my doctor I went to another in the practice who straight the way started the ball rolling. I was sent to see the respiratory nurse at the hospital who organised x ray and oxygen for me. From there I was referred to a consultant, I had a scan and was then told I had cancer of the lung and CHF. as well as the copd I originally went to the doctors with. Everything moved very quickly and apart from the first doctor everyone was very kind. I am now on palative care at home, if the first doctor had listened to me I may have been in a different situation ask first went many years ago and an X-ray was put on inhalers and no follow up X-rays. I encourage anyone who is not happy with their care to seek a second opinion. I left it too late.

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