Carenity members tell us about their breast cancer diagnosis
Jun 25, 2019 • 6 comments
Carenity members affected by breast cancer have graciously told us about their journey with their breast cancer diagnosis! Symptoms, emotions, tests and examinations, medical care, treatments... read their story with their diagnosis.
Carenity survey of 99 patients in the United States.
A majority of the patients waited less than a year to be diagnosed and the majority consulted with 2 doctors before reaching their diagnosis.
Fortunately for those suffering from breast cancer, the time period to arriving at a diagnosis was not too long. 82% of patients who participated in this survey received a diagnosis in less than a year from initial onset of symptoms; 18% of respondents received a diagnosis after more than a year.
During this period, respondents experienced varying symptoms with different severities. However, the majority of patients complained of the following symptoms:
Lump in breast | Tender/painful breast| Fatigue| Inverted Nipple | Weight Loss | Discharge from nipple |
Before the diagnosis: the impact of breast cancer
We asked our members about the impacts the symptoms caused by breast cancer had on their daily life before reaching a diagnosis, and this is what they had to say:
Chronic fatigue- 55%
Personal Life - 52%
Hobbies and activities - 35%
Family life - 35%
Social life - 26%
Professional life - 25%
Chronic pain - 24%
Other - 27%
The majority of respondents reported that chronic fatigue had the greatest impact on their daily life before the diagnosis. Fortunately, 46% of respondents reported that only one part of their daily life was impacted by the symptoms prior to reaching a diagnosis. Members in general felt that the symptoms impacted their social or professional life the least.
Before diagnosis, only 43% of patients did their own research on the internet concerning their symptoms. A majority of those individuals reported using websites such as the WebMD, breastcancer.org, Komen Foundation, cancer.org, and American Cancer Society, while several patients reported they did their research by reading books and articles or typing symptoms or concerns into Google and other search engines. Additionally, others mentioned they talked to alternative doctors, other patients with a similar diagnosis, and friends who had been diagnosed with breast cancer.
Many respondents didn’t try any alternative therapies for their breast cancer, such as homeopathy. Only 13% of the patients that participated in this survey said they did. However, those who did try alternative therapies reported use of CBD oil, medical marijuana, alkaline water, yoga, tumeric, essential oils (such as frankincense oil), the Gerson and Budwig diet, Gerson therapy, minerals (magnesium, niacin, chromium), and vitamin c.
Being diagnosed with breast cancer: what you had to say
For many diseases, the road to diagnosis is peppered with a misdiagnosis/misdiagnoses. However, with breast cancer, only 7% of the particpating patients experienced a diagnosis error prior to their ultimate diagnosis with breast cancer.
According to the Carenity members that participated in this survery, they were misdiagnosed with a stomach ulcer, vitamin D deficiency, bursitis, fibrocystic breast disease, and GERD.
Although only 7% of members reported a misdiagnosis, the misdiagnosis did result in causing considerable stress. One member said that they were constantly feeling “frightened for the future” and were in “constant pain”.
The shock of the diagnosis
How did patients react to their diagnosis?
It wasn’t a shock, I was expecting it - 44%
It was horrifying - 33%
It was brutal - 21%
I didn’t feel anything in particular - 15%
It was a relief - 7%
Finding out that you have breast cancer can be a frightening event, but 15% said they did not experience any particular sentiment whilst 7% of patients can’t remember how they felt at all.
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 time in discussing with them their brest cancer diagnosis while also being calm and emphatic. The main problem members felt with their medical care was the feeling that the practitioner didn’t care and they they were cold and distant delivering the diagnosis.
Some comments from respondents described that the the doctor's officer expressed sorrow when informing them of the diagnosis, while others described the delivery as being more "rude" and "blurted out”. Some respondents said their doctor's office informed them of the results and diagnosis over the phone, while others requested that they come into the office.
Fortunately, over all, the majority of respondents had positive feedback regarding their medical care and doctor, with some respondents saying their doctor or doctor's office "was sweet," "offered support," and offered information for local support groups and groups for assistance.
66% - The doctor took the time to explain
60% - The doctor was very emphatic
57% - The doctor was very calm
24% - The doctor offered offered psychological support
9% - They were cold and distant
7% - They used cold and scientific language
7% - They were too fast explaining
5% - They looked like they didn’t care
10% - Other
The patient's struggle when facing breast cancer...
We asked our members how they felt emotionally after receiving their diagnosis, whether they felt renewed with determination now that they had a name for their symptoms/condition, or whether they felt despair for their future medical journey. Many members responded having felt several emotions at once and this is what they had to say:
26% of patients felt relieved by the diagnosis, but this was coupled with 69% feeling a great deal of anxiety. This anxiety was coupled with shock and surprise for 51% of respondents.
32% felt anger about their diagnosis; 28% reported feeling lost, confused and alone; 22% felt discouraged; and 10% of participating patients felt they were being misunderstood.
Fortunately, 58% of participating members felt determined to fight the disease, but only 19% had confidence for the future, with 10% feeling despair.
How can diagnosing breast cancer be improved?
The above statistics about how patients felt following their diagnosis paints a "not so great" picture for those facing a diagnosis of breast caner. We asked our members how they felt the process could be improved and a lot of respondents said they would have appreciated more support following the initial diagnosis.
The most resounding suggestion in improving the journey with a diagnosis of breast cancer is for doctors and doctor's offices to be kind/compassionate and to provide the patient with more information about their diagnosis, what they can expect going forward, and how to manage it.
Another important suggestion from members is to have someone there for support during the appointment or phone call... "bring a family member or friend."
This is what some members had to say:
"At the very least the doctor should call. There should be more compassion than a cold nurse delivering cancer diagnosis."
"A bad diagnosis should never be given over the phone."
"I think if I was called back in to the doctor?s office to discuss the biopsy report, vs getting the phone call, I would have been more upset. The doctor remained calm, understanding and answered questions. If I had to see the doctor tell me the diagnosis, her reaction would have added to my distress."
"Bring a family or friend with you who knows how to show empathy and support."
"There is really no best way to hear about chemo radiation surgery or cancer just be suportive and answer thier concerns as they arrive and help with emotional support when needed. Families support is great friends and your community all play apart when you world crashing around you when you can't work or take care of yourself its a tough struggle somedays to just get outta bed."
Patients feel that their doctor should show compassion and dedicate time to answer any questions when delivering a breast cancer diagnosis. Patients also encourage utilizing family members, friends, and your community for support.
Members want more detailed information and support from their healthcare providers, so that they don’t feel lost and discouraged going forward.
And what is your story?
Let's share our experiences and that of our loved ones in the comments regarding breast cancer diagnosis!