Hi Suzyq39, can you please introduce yourself in a few words?
My name is Sue and I live in Manchester, UK. I am 61 years young and live with my husband. I have two grown-up daughters and four grandchildren.
How were you diagnosed with breast cancer?
I went for my mammogram check-up and was called back. I had no symptoms and didn’t even feel the lump after they told me of the results of the mammogram. I was 60 when I was diagnosed.
Was the diagnosis completely unexpected or were you considered to be in a risk group? Did you know a lot about the condition before the diagnosis?
The diagnosis was unexpected to a point as I thought I was quite healthy, although my mother did have a mastectomy at the age of 59, but I didn’t think I was at a high risk. I knew a little bit about breast cancer with my mother having the disease, but her lump was the size of an egg. I found the consulting team very matter of fact, as if it was just a case of the flu. The only person that I thought was supporting was the Oncology Consultant. The only other thing I found frustrating was the fact that both my mother and grandmother had breast cancer, but because of my cancer stage, type and size, I wasn’t considered to be a possible BRCA gene candidate, unless I paid £500 for the test.
You’ve mentioned you had a lumpectomy. How much time passed between the diagnosis and the surgery? How did the surgery go and what were the results?
I was booked in to have the surgery in less than a fortnight later, but I cancelled the appointment as I thought I was being rushed and felt like I didn’t have any other choices. The surgery went OK apart from the lack of care (in my opinion) nobody came to see me after the surgery to let me know what happened as regards to the number of lymph nodes taken and I had to ask the nurse, which in my opinion should be done by the surgeon. Every other surgery I have had, I have been visited before leaving the hospital to advise how the surgery went, I think it is so unprofessional and uncaring. At the post-operative appointment I was armed with loads of questions and taped the appointment (I did ask permission). They managed to get a good margin and only took one lymph node which was clear.
Can you please tell us about your radiotherapy sessions?
I had 15 sessions in total; the first one was the scariest as I didn’t know what would happen. I had a lot of aches and pains in my back with putting my arm up in that awkward position. I felt OK really after the treatments apart from feeling a little tired and sunburnt in that area. I developed a frozen shoulder a few weeks after, which I believe is one of the normal side effects.
Are you on any medication at the moment? How regularly do you have to do check-ups?
I did take the Aromatase Inhibitor for a couple of months but found that the side effects were too hard to deal with, pains in hands, increased hot flashes and dry mouth. The Consultant did some number crunching and found that the benefit was only 0.07% so I decided to stop taking it. I have check-ups yearly now for the next five years. Although I did ask for an appointment a few months ago as I was having funny pains in my breast, but again I thought they were uncaring and not very helpful or reassuring.
What is the biggest impact breast cancer had on your everyday life?
I think the only change that it has made is mentally, I feel paranoid about every little pain in the breast and other parts of my body. It makes me feel like I may have cancer somewhere else that hasn’t been investigated. I still feel that I am not able to check that breast as it is still hard where I had the lumpectomy.
What (who) helps you stay positive?
My family and friends are very supportive and other cancer survivors that I have got friendly with via MacMillan.
Have you been part of any patient support groups in your area?
Yes I was referred to the local MacMillan centre and had a lot of support from their counsellors and enjoyed treatments and sessions to help with anxiety and tiredness. I did meet a few other ladies, one with breast cancer, one with another cancer and a lady whose husband had cancer.
What would you advise Carenity members and other breast cancer patients?
Ask lots of questions to the medical professionals and don’t be afraid to ask if you can tape the conversations so that you don’t miss anything. Make a diary of how you feel so that you can keep a track of good days and so that you can vent your anger by writing rather than at the people you love. Don’t be afraid to tell your family and friends how you are feeling, even if you think they don’t want to know!