Unease about referral

I feel unease about the circumstances under which I was turned town for HIPEC surgery for my peritoneal mets.

I was diagnosed early February and the surgeon expressed the opinion that too advanced for surgery. However when I asked if it might be an option if I made a good response to chemo he agreed to refer me to Basingstoke. He then passed me on to the Oncologist.

I was scheduled for 4 cycles of Folfiri, the first of which had to be abandoned due to a bad reaction which resulted in hospitalisation. Subsequent cycles were at reduced strength. However a scan in June showed stable, which under the circumstances was a good result.

Now the cause of my concern. Should my referral to Basingstoke been reviewed at that point? The surgeon in subsequent correspondence stated that to be a candidate, shrinkage or at least remaining stable would have been required, and I had at,least made the latter requirement. I feel, however, that having been passed on to the Oncologist. I had dropped off the Surgeon’s Radar.

Post scan telephone appointment with Oncologist stated that there would be a chemo break of 2 months and a further scan. I mentioned Basingstoke, and he said that he would look into this.

Having still not heard about Basingstoke, wrote to Surgeon, copy to Oncologist asking for update. In early August had telephone appointment simply stating that Basingstoke could not offer me anything, and this was before my second scan. I asked whether this was covid or medical related and he assumed medical

Had scan in September which showed progression. I then wrote to surgeon asking when I was reviewed and have just had his reply. He stated that the recommendation was systemic chemo and consideration of surgery. He then commented that the benefit of chemo had to be balanced against the risk of covid infection, which seems to validate the 2 month break. Then stated that the second scan was shared with Basingstoke and that it showed progressive disease and that HIPEC would not be of benefit. He then said that he referred me to the Oncologist to see if any disease modifying chemo could be offered. In fact the appointment with the Oncologist was set up before my second scan.

I get the impression that I was never seriously considered for surgery.
I would have thought that the time for review would have been after the first scan, and only then a decision made about chemo. It would seem that Basingstoke had not seen the first scan, and as the second one showed progression, it seems that my window of opportunity was missed.

I am now on a Lonsurf regime, which does not seem to offer very much, and even a referral for PIPAC seems a very unlikely possibility as the trial is in suspension due to Covid.

I get the distinct feeling of a cover up for not following up my Basingstoke referral. It was previously suggested that I referred my disquiet to the Patients Liaison Committee, but followed protocol by first discussing with the clinicians concerned. Having done so I feel even more disquiet, and have the mixed emotions of striving to get to the truth, and feeling that it would do nothing to improve my situation, and could impair the relationship I have with my Oncologist.