A Proposal of a Plan

After several tests and consultations, meetings and review of the pathology (I carried slides and pieces of my appendix in my shoulder bag on the airplane, and the team here has been able to look over the work done by the lab in South Africa, as well as make their own slides), the team at Penn has come up with a proposed treatment plan for us.

We will start with the hard news. My cancer is not considered curable. While we have received lots of encouraging test results showing an absence of widespread cancer, it is metastatic. The progression out of my appendix, and the confirmed metastasis in my pelvic wall tells us that the cancer is in lymph tissue and my blood stream and we are operating under the assumption that it will come back.  The team will assume that any clear test results means that the cancer is there, but too small to see. While this is hard, it is in many ways good – there is very rarely an ‘all-clear’ after cancer, certainly none with guarantees, and this reality and awareness allows us to plan how we move forward with a great deal of intention. Particularly with a slow growing cancer like mine, this means that we will watch and wait for it for the rest of my life – which may well be a very long time!

Moving forward, our next step is an MRI to look closely at my liver to rule out any visible tumours there. That is scheduled for Friday, June 17. [Update: we have those results, and they are clear!]

After we get those results, we will have another consultation with the Penn team to plan for surgery, which will have several components:

Part of the surgery is exploratory – the team will look closely at my peritoneum for additional tumours, what they call micrometastases, too small to show up on scans, but big enough to be seen with magnification during surgery. We are fortunate that the doctor who did the original surgery in South Africa looked closely and removed the only suspicious lesion he found (the single metastasis), but he was not a specialist in neuroendocrine tumours and wasn’t looking for them specifically, so the team here will look very closely to see what can be found. They will also look closely at my ovaries, both of which have cysts; these cysts are probably normal, but my right ovary has a spot that may not be, and so they will look for signs of spread there. They won’t remove my ovaries themselves unless they see signs of cancer (they may remove the cysts).

Next is the treatment part – because the cancer was found accidentally, there is cancer (what they call primary disease) left behind, and there was no margin removed in my initial surgery. A margin is an area of healthy tissue (we want it to be healthy!) that the team will remove around the area where cancer was, in order to be sure they’ve got as much as they can get out. In my case, to get the cancer and the margin this means a right hemicolectomy – the removal of about a third of my colon, my illeocecal valve and a portion of my small bowel. They will then reattach my remaining bowel.

The last piece of the surgery is both part of the treatment, but also diagnostic. They will remove a large number of lymph nodes from my abdomen and pelvis and they will all be biopsied. Those lab results will give us a sense of the cancer’s spread in my lymphatic system. Cancer in two nodes or in twenty will help us plan how we watch for the cancer’s return as we move forward.

Depending on the results of the liver MRI, the team may be able to operate on my liver at the same time, if that’s necessary/possible. Timing for the surgery will probably be mid-July.

The news that this is incurable is not unexpected (we knew from the start that the pelvic metastasis was bad news) but still hard. It is not hopeless. While no one will talk prognosis until we actually have the liver MRI results, and possibly not even until after surgery, the team here is planning for a long game, a long fight. They admit I am something of an anomaly – this is a rare disease, and I don’t fit the statistics for it – but they are prepared to walk this road with us for a long time. This is a very slow growing cancer, and the current guess is that I’ve had it since I was 13 or younger. We believe that the acute symptoms were because of the metastasis and then appendicitis – basically, my tumour outgrew my appendix, and so the cancer spread. If my appendix had been bigger, the tumour would have just gotten bigger, the long term effects and symptoms would have continued, and the acute illness would have happened when the tumour reached the limits of my appendix. So there was no catching it earlier, before it spread. There are no ‘what ifs’ that we wonder or worry about. We don’t think there was any way to catch it before it was too late, because that spread is what let us know it was there. 

We have a great deal of peace, and we will write more about that. For now, we just wanted to let you all know where we are at, what we are waiting for, and what we are planning for. 

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