Nuala, who is a member of Lobular Ireland, shares her thoughts with us – both as a health professional and as a woman with a Diagnosis of Lobular Breast Cancer.
In March 2020, I was diagnosed with Invasive Lobular Cancer, post-menopause. It has given me a true experience of being on both sides of the Health Service, most recently as a Service User and I have learned a lot.
Fear of ca and fear of ca reccurrence seems to be quite a universal fear. Great strides have been made in the diagnosis and management of cancer and breast cancer, but management cannot be prescriptive.
Every woman should be informed of the category of their breast Density as soon as known (seen on a Mammogram). Having dense breasts is an independent risk factor for developing breast cancer, more than a familial history. Since May 2022 the HSE Website advises women to ask their doctor about their breast density if they have concerns.
Anyone with a diagnosis of breast Cancer needs to be adequately informed about their specific Subtype. ILC is a very distinctive type requiring specific clinical management. As part of a diagnosis of lobular breast ca a breast MRI is recommended, to assess extent of tumour, to inform best management for: surgery, grading, staging etc.
I had an Ultrasound and 2D Mammogram. In my case, had I been given an MRI, a second separate surgery 3 weeks after (Mastectomy followed three weeks later by an auxiliary clearance) could most likely have been avoid. An Ultrasound did not pick up any ca in my lymph nodes (though my tumour was quite big) thus I had to have further surgery Post-Mastectomy. I also have been told I have extremely dense breasts.
Lobular Ireland, http://www.LobularIreland.com I have found a great resource for information on up to date evidenced based international research to inform and promote best clinical practise and management of ILC. Information/education for the patient is power. The inverse is also true and in my experience only compounds uncertainty and anxiety. I really believe in the importance of a Holistic approach to Health Care. We all need to work together and also remember the patient has the lived experiences.
Research is the way forward. I would encourage patients to ask their Oncologist if there are any suitable Clinical Trials available to participate in. I am glad to be part of a Clinical Trial. I also recommend participating in Can- React ca programme NUIG (evidence based and run by Physiology Dept. for graded exercise programmes which I have found really excellent.
I try to live more in the moment now, and take pleasure in everyday things also. I have rediscovered old interests and found some new ones too. My perspective has shifted to what is really important and I do feel gratitude for where I have now arrived after this difficultcouple of years. . Find something you enjoy and love doing and continue to go for ca Screenings and remain vigilant.
Do not be afraid, Do no harm.
Ar Scáth a Chéile a mhairfimid.