15th June/1st July 2019 - Good news from surgeons

Unexpectedly, the opinion regarding the feasibility of an operation in the light of the results of the recent scan came, unsolicited, from the surgeon Jane and I visited back in February, before choosing the oncologist.

That surgeon had received regular updates on my condition from my oncologist and, having read about the significant improvements, he decided to get in touch to invite me for a consultation.

Jane and I responded enthusiastically and immediately booked an appointment. During the consultation, the surgeon told us that my response to chemotherapy had been fantastic, that only two tiny metastases could now be seen in the liver and that the primary tumour in the pancreas had also significantly reduced in size.

In the letter he prepared for my oncologist, he strongly recommended surgery two weeks after the completion of chemotherapy, particularly considering my relatively young age. He told me that surgery was my only chance of a cure and that the window of time he suggested would be the most appropriate one to do the operation.

Jane and I left the consultation feeling quite emotional: for the very first time, we saw the possibility that I could actually come out of the tunnel I had entered on that sad 8th February.

The next step was to contact the doctors in Heidelberg, to whom I had sent all the scans. Although I had always dealt with them by email, I decided to organise a face to face consultation, which would allow me and Jane to ask all the questions we had.

That consultation took place on Monday the 1st July. Jane and I left the kids with their grandparents and flew to Frankfurt, which is roughly one hour away from Heidelberg. The appointment with the Professor took place in the early afternoon – like the surgeon in London, he was positive about the feasibility of the operation, mentioning that his expectation was that by the time I finished the 12th cycle, the remaining metastases would completely disappear. He told me that post-surgery my hair would grow back and that I would be able to go back to a normal life. The risk of recurrence would be quite high but he referred to a (roughly) 30% chance that a complete cure could be achieved.

He also added that, in an ideal world, my tumour marker should be below 100 kU/L by the time I got to the operation. It was still quite a bit higher than that, but his expectation was that it would fall to the required level by the time the operation would take place. In terms of post-surgery recovery, he talked about the need to spend a week in the hospital, followed by a week in a hotel, and then I would be allowed to return home.

The Professor also said that he would be happy to liaise with my oncologist in London for any after-care, although he did not expect this to be necessary. He also mentioned the huge experience he had in terms of conducting radical surgeries like the one I needed and he referred to particularly helpful statistics in terms of survival rates.

At the end of the consultation, we had two options I could pursue: to undergo surgery (in London or Heidelberg), or to continue with chemotherapy indefinitely (perhaps with some breaks), the latter being the more conventional option, as repeatedly stressed by my oncologist over time.

My dream from the outset had been to reach a situation where surgery could be doable but in order to make a more informed decision, I decided to get in touch with some experts in the US. A friend of mine gave me the details of a couple of American academics and surgeons specialised in pancreatic cancer. And I found a few more on a website that lists all the main experts in this area worldwide (see more here). Incredibly, these people replied to my questions within a matter of one or two days and without asking for money. Human nature can be surprisingly kind sometimes.

The responses I got were mixed. On the one hand, they corroborated what my oncologist always said, namely that performing surgery on a stage 4 patient is a risky strategy that is only recommended under exceptional circumstances (basically, if post-chemotherapy there is no longer any sign of illness outside the pancreas). On the other hand, they strongly pointed out that if I really wanted to go ahead with surgery, Heidelberg was definitely one of the best places in the world due to their knowledge and the very large number of operations they undertake each year.

A review of recent articles published by medical journals also delivered mixed messages. For example, a paper published in April 2019 in European Surgery and co-authored by Niesen, Primavesi, Gasteiger, Neoptolemos, Hackert and Stättner (see more here) emphasises the lack of existing systematic data that would allow oncologists and surgeons to strongly support the surgery option. In particular, the authors point out:

“Current guidelines do not recommend surgery for metastatic disease. This recommendation is derived from the generally poor prognosis and especially the lack of randomized controlled trials. Thus, the available data are limited to retrospective analyses, case series, and case reports. However, high-volume centers tend to push boundaries and perform partial hepatectomy combined with pancreatic resections or metachronous liver resections in cases of isolated hepatic recurrence.”

However, after performing an extensive review of studies looking at different ways of treating metastatic pancreatic cancer in patients, such as a focus on pre- treatments and a more detailed way of categorising patients and patient response, the authors conclude that there is emerging data in specific cases to support more surgical intervention even when the cancer has spread:

“There are promising data to support resection of metastatic PC, presuming this approach is embedded in a multimodal oncological concept with modern and effective multi-agent chemotherapies and proper patient selection. Based on this, future studies should specify distinct groups of patients who benefit from extended surgical approaches including synchronous or staged metastasectomy.”

In the end I satisfied myself that my decision on whether to go ahead or not would have to be made in the absence of any rigorous data and evidence. Basically, I would have to follow my instinct.

And my instinct, from the outset, was that I would go for surgery if that became an option. After all, it was the only chance of a cure and, to be perfectly honest, I would have gone for it even if the surgeons had told me that there was a non-trivial risk of dying during the operation (which apparently was not the case in any event).

Then there was the further choice to be made between undergoing surgery in London or in Heidelberg: consistent with the overall strategy of giving myself the best chance of survival, I decided to opt for the Heidelberg option. This was not a straightforward choice as the London surgeon was both extremely well qualified and a genuinely nice person. However, the volume of operations conducted each year in Heidelberg, coupled with the world-wide reputation enjoyed by the Professor that would perform the surgery pushed me in the end to opt for a “German holiday” during the summer.

But for that plan to go ahead I still needed my tumour marker to further decrease below the 100 kU/L threshold. The remaining four cycles of chemotherapy would therefore be crucial.