Wednesday, 17 March 2021

Quality of treatment and early diagnosis: "A geographical lottery for some"? BRiC's Collective Voice

Quality of treatment and early diagnosis: "A geographical lottery for some"?

A recent BRiC Sunday topic discussed early detection of cancer and if we feel that our treatment has not been all we would have wished for, for whatever reason, how do we come to terms with that?

Our women, with primary or secondary diagnoses, felt this a most pertinent subject to discuss and the variation in our experiences was vast. Quite quickly, it became clear that not just a small but large proportion of our women had concerns about the lack of tools in early diagnosis, and their implementation in picking up signs of primary breast cancer and metastasis in secondary breast cancer.

Amongst our biggest concerns were failures in initial diagnosis (inconclusive tests not followed up) and considerable delays in getting diagnosed. For the former, some of the initial tests were unable to confirm a diagnosis and were not always followed up with a biopsy to produce conclusive results. Some expressed their fears around missing lumps on mammograms. Some expressed their disappointment of being ignored for tests when later they were diagnosed with lobular cancer, which is hard to diagnose in the absence of a lump. These all were believed to lead to the danger of letting tumours grow and metastasise. Given that breast cancer can express itself in all kinds of forms, it is worrying to hear so many accounts of late diagnosis.

Equally, a common issue experienced by many was the long interval between seeing our GP and getting tests for breast cancer. Some of our members believe they were ‘ignored’, that their ‘red flags’ were not seen, that their concerns were attributed to benign factors like age, muscle tenderness (or injury), fatigue and overdoing it at work. When in fact, they had breast cancer and it was undetected. For some an experience of a red rash was responded with ‘there’s nothing to worry about’. This coupled with the delay in administering tests led to a primary turning into a secondary diagnosis.

Some of us had experienced considerable delays from when we found a lump (for example in 2011, but not diagnosed until 2014). Similarly, we had a member say, “they could have done without the nearly a year of going back and forth to the breast unit and being told it was only a 'cyst’.”

We expressed our disappointment at why we had to resort to complaining to PALS to get heard for speeding up our treatment procedure or reporting our upset with our medical team. A member voiced their concern about a macmillan nurse who was not only unhelpful but said, “ I’ve never known or helped anyone as young as you with a diagnosis like this and I don’t know what to advise”. In a situation where fear dominates, the psychological ramifications of such responses can only run high.

We understand and acknowledge that breast cancer is a malicious and deceptive disease. Therefore, early scrutiny of signs is key to diagnosis and saving lives. Irrespective of what we experience, we put our trust in our medical team whom we believe will do the best for us. Breast cancer is also not an older woman’s disease, it can happen to anyone at any age. For younger women we believe there needs to be better education and vigilance on part of the medical team, for example discharge from the breast can be a sign of breast cancer but for a mum who’s just finished breast feeding this can be a benign symptom.

One member said it felt like a ‘geographical lottery for some’. There were many of us who believed that we’d had the best treatment possible, and that we were so grateful to our medical team for it. We had good accounts of attentive surgeons, oncologists and breast cancer nurses who looked out for us, who held our hands and who comforted us. Having said this, a large proportion did not have this experience. Those of us with better treatment regimens felt angry that we had to consider ourselves lucky to have had a smoother journey through treatment.

If you are a woman with a breast cancer diagnosis and would like to join our private support network please message us here and we will get back to you.

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