Hi
I am new to this group despite my treatment being over since the summer of 2022. I had good support from friends and family during my diagnosis and treatment which really helped and I was also well supported where I live. I live in a fairly small community which has seen more than its fair share of cancers. The community has a high number of older people which is probably why.
I was diagnosed with lobular breast cancer in September 2021. At first there was some discussion of a lumpectomy but after an MRI scan I was told that the area of concern was much larger than had shown on my mammogram and ultra sound. Lobular cancer is sneaky it does not form a lump but spreads out like a spider's web. I had a mastectomy in the October and thought that was it as did my surgeon. The infected area was 7.5 cm so quite substantial. Unfortunately when they examined the four sentinel lymph nodes three of them were malignant. I then had a CT scan and as there were no other "clumps" , as they described it, I had a lymph node removal from under my arm in January 2022. In total 14/18 of the nodes were infected.
Unfortunately the first operation triggered polymyalgia in my body and that caused me a great deal of pain until it was properly diagnosed and treated. I started chemotherapy in March, after the first session I contracted Covid so it had to be delayed a bit. I also lost my hair at the same time. Fortunately the Covid was mild. I completed my 4 sessions of chemotherapy mid May. In June I had daily (weekdays) radiotherapy for three weeks and this finished at the end of June. My hair started growing back quite quickly. It came in soft and curly at first but now is straight again and thick.
My cancer was hormonal and I am on Letrozole as are so many others for ten years. It has some side effects that are similar to menopausal ones. I am glad that I did not know when I started out with my mastectomy how much worse and how much longer the treatment would last. My mother had a mastectomy in her sixties and was out and about within a fortnight and never looked back. It is just a pity it was not picked up earlier but lobular cancer is harder to trace even on mammograms.
I developed Lymphoedema in my arm which is a nuisance and can cause problems when buying clothes. My arm is swollen and I must wear an elastic stocking like thing that stretches from my armpit down my arm and hooks over my thumb. It is awkward as I am right handed and that is the affected side. My arm feels heavy because of the fluid but is not sore. I still have the polymyalgia but the steroids I am prescribed keep the pain away.
Happy to chat to anyone who has any similar concerns
I did go to a lady for a special lymphoedema massage which helped but it was quite expensive and she lived a good hour's drive away plus I needed to get a ferry to get to her so I did not go back it was just too much effort. She used to do these massages all the time for the NHS but they made her redundant and stopped offering that service.
