I have just been for my 6-monthly oncology review following my most recent CT scan. The ablated tumour sites remain stable with no new metastatic disease noticed elsewhere. Nothing of concern in the blood screen. So I remain in the state of being incurable but having had neither active treatment nor evidence of disease. A state that has now been ongoing since Feb 24.
As a quick recap, I was diagnosed with what was thought to be early stage grade 3 triple negative breast cancer in Feb 22. Surgery, adjuvant chemotherapy, radiotherapy. Small tumour, clear margins, no lymph node involvement. Vascular invasion at tumour site. Then the shell shock of discovering a solitary liver secondary in Aug 22 whilst still going through the chemo. Then an ablation procedure. In Feb 23, 3 months after the ablation, I had a significant and fast growing recurrence of the liver tumour, plus learned I had another in a different segment. These grew rapidly, developed satellites and biliary dilation whilst the hospital went through the steps to get me authorised for pembrolizumab. I started pembro plus NAB-paclitaxel in May 23, but had to stop treatment in September 23 due to a serious immunotherapy related adverse event. That had major impact on me, as did the 9 months of steroid recovery. However, the tumours had responded really, really well, but not completely disappeared. By Feb 24 there was no change so I had another ablation. I have had no cancer related treatment or procedures since. Scans initially at 3 month intervals, and more recently at 6 month intervals, continue to be clear.
So I would appear to have long term metabolic stability on a metastatic cancer that had initially presented as being highly aggressive. Grade 3. Early metastasis (possibly de novo as I was not staged at initial diagnosis), rapid recurrence and progression in the liver following the first ablation. But on the positive side, oligometastatic and no lymph node involvement. I am not aware of ever having cancer anywhere other than in the breast and liver.
Today, I am exceeding the ranges of progression free survival documented in the Keynote trial that approved pembro for metastatic PD-L1 positive tnbc. I am exceeding the ranges of progression free survival from liver ablation. My hospital has no other person in a similar position.
The interesting question is what to do from here on in, assuming I remain stable. Continued surveillance for the rest of my life seems on the cards, unless / until there is some clinical evidence that suggests it’s safe to release people like me back to primary care. The current view is to scan me again in 6 months. By then I will be 3 years NED and 5 years since initial diagnosis. The tentative plan is to drop me then to annual scans for at least the next 2 years. I hope after that I can negotiate surveillance by blood screen with a scan only if bloods indicate a change or I have symptoms. Suffice to say I have never had any symptoms from the cancer itself.
I am cautiously optimistic this will hold and it’s good to see my oncology team gradually shift from “it’s tricky, it always comes back” to sharing a view that the signs are encouraging whilst continually reminding me I am not cured and it might come back. I hold onto the differences between it might and it will come back. Meanwhile I continue to try to improve my health following the impacts of the IRAE and the steroids.
