Supporting women whose lives have been touched by breast cancer

Living with incurable regional recurrence:

sometimes a lonely place to be

by JaneRA

I learned a lot about breast cancer after my primary diagnosis in 2003. I had triple negative disease, 23/25 nodes with cancer and a poor prognosis. I knew the symptoms of secondary breast cancer and of local/regional recurrences and was alert to any changes which might suggest my cancer had returned.

Three and a half years after my diagnosis, I found a small lump just above my collar bone. Cancer had spread to my infra and supraclavicular nodes and to the muscle in my chest wall. I was relieved when scans revealed no evidence of spread to my bones, lungs or liver. As it was regional recurrence and not ‘ distant mets’ I assumed the cancer might still be curable so I was pretty shocked when my oncologist said that I might sustain ‘partial remission’ but that it was not curable. He said that maybe I could be described as being the ‘good end’ of Stage 4, though strict staging categories would classify mine as Stage 3c cancer.

Neither surgery nor radiotherapy were possible. I had several areas of tumour and whereas a single cancerous node might have been operable mine weren’t. I had had radiotherapy of my chest wall and neck during primary treatment and it’s not possible to irradiate the same area twice. Being triple negative, hormone treatments and herceptin were also not options, so my only treatment possibilities were further chemotherapy. (I had already been treated with AC and taxotere).

All that was over a year ago. Since my diagnosis I’ve had 6 sessions of vinorelbine and capecitibine. A CT scan showed improvement and I continued on capecitibine for three more cycles. The cancer started to grow again and I did 6 cycles on carboplatin and gemcitabine. At the end scans showed the tumours had stayed stable so I took a break for three months. During that time the tumours in my neck, shoulder area and chest wall increased in size and a CT scan found microscopic changes in pelvic lymph nodes which are possibly cancer. I am now doing weekly taxol (3 out of 18 as I write.)

In the early days I found it very hard to deal with my status as someone with an incurable regional recurrence. Most breast cancer books, leaflets and internet sites, if they mention regional recurrence at all, have a scant paragraph squeezed between brief information on local recurrences and detailed information about secondary breast cancer. Breast Cancer Care (BCC) for example has recently devoted considerable resources to improving information and support for women with secondary breast cancer. A new pack about secondary breast cancer has an introduction which explains what secondary breast cancer is. It emphasises that a regional recurrence is not secondary breast cancer and says nothing further on the subject, implying therefore that it is curable.

A breast care nurse explained to me how my regional recurrence could kill me. (by compromising lungs or by ulcerating and causing fatal septicaemia.) This possibility was powerfully brought home to me recently when, still pleased with the ‘good’ news from my latest CT that my major organs showed no evidence of disease, I suddenly developed cancer related symptoms. My left eye has gone droopy: this is horner’s syndrome caused by tumours pressing on nerves. My voice went hoarse literally overnight and nearly disappeared. It took me a full 24 hours to realise this too was cancer related. Three weeks on and I am adjusting to a squeaky high pitched tone where once I boomed loudly.

Many women with secondary breast cancer feel that their needs are ignored in the plethora of information about primary breast cancer; hence the importance of resources devoted to the emotional impact of a secondary breast cancer diagnosis. By contrast there seems to me to be no recognition of the emotional impact of local or regional recurrences. While some local recurrences can be treated successfully and do not increase the chance of further spread, some local and most regional recurrences are harbingers of distant spread and in some cases, such as mine, the regional cancer will be treatable but not curable. Treatment at the end of the day is, as it is for those with secondaries, essentially palliative.

I feel myself to be in the same leaky boat as women who have distant metastatic disease. My medical team agree. It is true that my disease has not spread to another part of my body but it is not this distinction which makes the big difference to how I feel. It is also true that like some women with one or more sites of distant metasteses I now am beginning to have unpleasant life limiting symptoms including pain in my shoulder and neck (well controlled for the moment) Like anyone with distant metasteses my disease is incurable so my major struggle is coping to terms with the idea of a foreshortened life.

The prognosis of advanced breast cancer depends on a complicated and uncertain interplay between the seriousness of the site of cancer, the pathology of the cancer, the efficacy of treatments and the range of treatment options. Yes a regional recurrence in itself is less immediately life threatening than distant metasteses, just as bone mets are generally less serious than those in the lungs, liver or brain. It is most likely that I will die of spread in another part of my body...just as many women with a single site of distant metastatic spread subsequently develop disease in other sites before they die.

The landscape of secondary cancer is changing rapidly. Some secondary cancer responds well for a long time to a particular treatment. Other people continue to die very quickly after diagnosis. I know women 10 years down the line whose bone mets have been controlled by bisphosphanates and hormonal treatments, women with extensive liver mets whose tumours have all but disappeared on capecitibine, and women into their seventh year on herceptin whose scans now show no evidence of metastatic disease. The site of my own recurrence is less serious, but to date it has only partially responded to vinorelbine, xeloda, carboplatin and gemcitabine. I have triple negative disease and my only remaining viable treatment option when taxol fails, outside of Phase 1 clinical trials, will be a return to vinorilbine.

I regularly use on line forums . Women with secondaries quite rightly feel that their concerns and perspectives are different from those with a primary diagnosis. I doubt they stop to think about those with regional recurrences, (we are after all so relatively few). Early on (though not now) I felt I had to explain, justify and apologise for myself. Perhaps I am being overly sensitive but all the information and support is geared towards those ‘whose cancer has spread to another part of their body.’ More than once I was told by other women that I had been misinformed about my position and that I could be ‘cured’. Theoretically I could be, but so theoretically could a tiny proportion of any group with metastatic disease.

All this makes me question the limitations of the categories of ‘primary’ and ‘secondary’ cancer. Those with secondary cancer are not a homogenous group. I think that the US sites and publications acknowledge the grey area of recurrences much more realistically than those in the UK. I was relieved recently to find a US website using the term ‘regional metastases’...I felt like someone was at last naming my cancer. There is also more general information in the US of the distinction between ‘early stage’ and Stage 3 breast cancer. In the US , women with Stage 3 breast cancer and locally advanced disease seem to know themselves as being high risk. By contrast in the UK it is rare to see Stage 3 cancer mentioned in breast cancer publications. I guess that the problems of rigid staging are also troublesome to many women with inflammatory breast cancer.

I count myself as someone who has become very knowledgeable about breast cancer. Yet at each stage of my particular cancer experience I have been shocked by new information. I didn’t know death by ‘regional recurrence’ was possible and it is. I didn’t know that permanently losing my voice could be a consequence of regional recurrence but it is.