On Thursday of last week Coleman and I met with our surgical oncologist, Dr. Roses, and his chief resident to discuss our options and make some plans. With all of the tests back, and several other opinions sought, he confirmed some of what we thought we understood and reaffirmed some of what we had discussed before:
– I have Stage IV cancer, which sounds terrifying, but is really just a description of how far it’s spread, not how widely, and in NET cancer is not really indicative of prognosis – many, many people are stage IV when it’s found, and have a (relatively!) good prognosis. I am barely a stage IV, and am in much better shape than many other patients at this stage. Grade, how each tumour is measured, is a better indication of prognosis, and both of my tumours were Grade 1 – the lowest, the best.
– It is considered incurable, but not terminal; this is new language, adopted in recent years as more treatments and medical advances mean more people are living with cancer, for long years, rather than experiencing the opposites of curable or fatal. Terminal now means death is imminent and foreseeable in the near future, with or without medical intervention. The term chronic is now used to describe my situation. (Interestingly, the cancer Coleman had – Hodgkin’s lymphoma – is also considered incurable, as most cancers are. Technically Coleman is in remission, not cured, but recurrence rate for Hodgkin’s after five years of remission is low enough that it’s often casually referred to as “cured” at that point. But strictly speaking we are both living with chronic cancer! The difference is that his is in complete remission, meaning he shows no evidence of having cancer cells right now, and mine is metastatic, so I do.)
– There is no standard, easy, ‘this is the right answer’ treatment plan, but we have consulted with a number of doctors and specialists and come up with a plan that the team, Coleman and I all feel is the best plan for me with the information we have right now.
On July 18, I will undergo a right hemicolectomy, cholecystectomy and possible right oophorectomy, with exploration of my peritoneum. In English: they will remove my ascending colon (first third of my large intestine), a small portion of my small intestine and my illeocecal valve (the connection between the two) and all of the associated lymph nodes. They will create a new attachment and rejoin my bowels. This will remove what remains of the primary tumour and get a margin (an area of hopefully healthy tissue around where the cancer was). They will disect all of those tissues, including each lymph node, looking for cancer and this will tell us more about how far it has spread. Cancer in two nodes or twenty nodes will give us different directions for what comes next.
The cholecystectomy is the removal of my gallbladder. The drugs currently used to best control the side effects of NET cancer and possibly slow tumour growth almost always cause gallstones and severe gallbladder attacks. Since I will almost certainly be on these drugs at some point, if not right away, the recommended course of action is to remove the gallbladder now, since it is a relatively minor and safe procedure, can be done while I’m in surgery and the risks are all absorbed into the risks of the right hemicolectomy – most of the side effects are the same.
During my surgery the team will be looking very closely at my peritoneum (pelvic wall) and on the structures in my pelvis for more small tumours. This will include looking at my ovaries, and there will be a gynaecological oncologist in the surgery who will determine whether or not the spot on my right ovary is normal or worrisome, and will decide what course to take – leave it, remove the cyst, remove part of the ovary or remove the whole ovary (an oophorectomy). While we have expressed our desire for a conservative approach, we have also been clear that we would rather they remove the ovary and find no cancer than leave it with cancer, and trust the team to make this determination.
Coleman and I are at peace with this decision. We are both very, very happy with Dr. Roses’ approach and trust his care and ability to make judgement calls during the surgery about how best to proceed. We have talked through numerous possibilities and contingencies and feel we are as prepared as we can be for any of them. We think that this surgery will give us the best chance of slowing this cancer down and finding out more information that will help us make critical decisions about how we move forward. As we come through crisis mode, and begin to calm down, with a plan set, we are starting to understand what this diagnosis means, and what living with chronic cancer may look like for us. It is daunting, and honestly terrifying, to realize this is a disease I will live with for the rest of my life, and that unless significant medical advances are made, that lifespan is significantly shorter than I would like it to be. But fifteen or twenty years (or more!) is much longer than the months we worried we might have just a few weeks ago. It is our belief that God can and will bring a lot of good out of however many years we have.
So, that’s the plan! The next step. It feels good to have that settled.
After our appointment, we drove directly to the airport, where we began our vacation! More on that in another post.