Had the results of a PET/CT scan last week and was given the shattering news that I’ve got widespread liver and bone mets.
My story so far is that in March 2008 I was diagnosed with a 3.2cm ER+, PR- HER2- tumour. I had a mastectomy and immediate DIEP flap reconstruction. The breast surgeon did not get clear margins and I was told by the plastic surgeon that I would need radiotherapy. As there was no lymph node involvement, I struggled to decide whether to do chemotherapy but decided to take the belt and braces approach and did four cycles of Taxotere and Cyclophosphamide which was followed by tamoxifen.
I was then ready to commence radiotherapy but the breast surgeon said she would re-excise the margins of the skin and, if clear, I would not need radiotherapy. At the time I remember being a little uncomfortable but took her advice and, as the margins were clear, didn’t have radiotherapy. Apparently the risk of getting a recurrence in a reconstruction is less than 5% so initially I was not too worried when I felt a lump in the reconstruction thinking it was just fibrous tissue. I was also lulled into a false sense of security by the fact when going for my 6 monthly check ups, the surgeon never checked the reconstruction.
In December 2010, I went back to the surgeon as I thought the lump had got bigger and sure enough the cancer was back. Having lost complete confidence in the surgeon, I had the operation done by an excellent surgeon recommended by my oncologist. At the time I had PET/CT scans done which were clear, although a small lytic lesion was picked up on the CT scan in the L4 vertebrae.
After the operation again I decided to adopt the belt and braces approach and did 6 FEC. When that finished in September 2011, I was due to have my portacath removed but wanted to have a scan first just to know that everything was ok. We then got the unexpected (and devastating!) news that the previous benign lytic lesion was now malignant.
This was successfully treated with cyber knife and since November 2011 I’ve been on Letrozole and monthly Zometa infusions. I chose not to have follow up scans as I wanted to try to get some normality back into our lives and was perhaps lulled into another false sense of security because I generally felt very well (still worked part-time, skied, played golf etc). I’ve also been seeing an integrative doctor and have been taking various vitamins and supplements including IP6 and reishi.
Over the last couple of months my tumour markers started to rise a little so I arranged a scan (and then bottled out at the last minute) Last month my liver function tests were abnormal so there was no alternative but to have a scan which is when we got the news about the widespread liver mets and bone progression. Since the diagnoses, I’ve generally been feeling not that wonderful. I’m still playing golf and eating normally but am definitely more tired and seem to get temperature fluctuations.
The oncologist has changed my Zometa to Denosumab and I had the first injection on Thursday and she has also prescribed Capecitabine which I’ve been looking (but not taking!) since Friday. I really don’t want to do more chemo as, to date, it hasn’t worked for me and the side effects just seem to be pretty horrendous with the hand foot syndrome.
I really like to know if anyone else has a similar story and has been diagnosed with such widespread disease and if Capecitabine has worked.
Sorry to ramble on all about me but I’ve been lurking on the site for a few years and have seen the massive support that everyone gives to one another here. My husband is wonderfully supportive but it’s such a strain for him. I haven’t wanted to tell anyone of my secondary diagnoses because I’ve been well and I just wanted to have a bit of that wonderful pre-cancer normality back with friends and family who were unaware of the extent of my disease.