Had post-surgery follow up meetings with surgeon and oncologist yesterday. I don't think we were prepared for them being so depressing. The pathology results are back and they weren't great (after surgery all the resected tissue - colon, liver and lymph nodes - was sent for testing).
The report is 7 pages long and there is a separate genetic screening report. I might do a separate post with the technical detail for those suffering from a similar diagnosis that I know are reading my blog...because I'm going need some advice on chemo and a few other points.
But here are the highlights:
- The good news
- The primary tumor (colon) showed a good response to the pre-surgery treatments.
- The surgery appears to have removed all tumors successfully.
- The bad news
- The primary tumor was treated with both radiation and chemo while the secondary tumors in the liver couldn't be treated with radiation, so we were relying on chemotherapy there. The pathology report showed that the liver tumors were barely impacted by the chemotherapy, which suggests that all of the pre-surgery treatment impact came from the radiation, not from chemotherapy. This is concerning because it suggests that my cancer is not responsive to the chemo drugs I was on (Oxaliplatin and Xeloda), despite being on an extremely high dosage. The reason this is so concerning is that we will be relying on chemotherapy to kill off any residual metastatic cancer cells. The next point makes this doubly concerning.
- They removed 37 lymph nodes in the surgery (that is a lot of nodes to remove - lets try not to think about the long term implications of that). Of these 9 were malignant. To put this in context, when they grade the severity of a cancer one measure they use is the number of impacted lymph nodes - 1 node, 2 nodes etc - but that scale stops at 7 i.e. anything more than 7 impacted nodes is considered in the worst category of spread. This, along with the liver metastasis, suggests I probably have a lot of cancer cells left in my body despite the actual tumors being removed. The original plan was to attack this with a second round of "clean up" chemo, but now everyone is questioning the efficacy of this and the concern is that it's just a matter of time before those 'wild' cancer cells find a new home and spark the growth of a new tumor, which may well turn out to be inoperable or untreatable, depending on where it is.
- The plan from here...
- My oncologist is considering adding another chemo drug to my cocktail (Avastin but Panitumumab or Cetuximab are also being discussed, however oncologist is concerned about side effects of the latter two). Previously he'd thought all I would need was another 3 month 'clean up' cycle on my existing cocktail, but now there is talk of 6 months of additional chemo.
- Because the veins in my arms have retreated due to the initial chemo cycles (and they weren't great to begin with), I need to have a port inserted.
- I also need a procedure to remove the caval filter which was inserted after my pulmonary embolisms to mitigate clotting risk during my major surgery.
- All this new shit starts in January, so I have around 10 days of "normal life" before then. I'm trying to think of something awesome to do in the next 10 days.
Given the relatively bad news from the pathology report I'm also reconsidering several alternative / complimentary treatment options that I'd previously parked pending the conclusion of first line treatment. I'm planning on getting a Curematch (USA) report done on my chemo options to augment my oncologist's own recommendations and I'm looking into the Care Oncology (London) complimentary drug regime. I'm also revisiting diet and supplements. Basically I'm doing whatever I can to stop this cancer spreading because suddenly chemo sounds like it's not going to be much help.
I'll probably have other PET CT scan in February / March to see whether the cancer is still present or, worse, spread post-surgery. Dreading that scan.
The shock of yesterday has also reminded me that I still have work to do on my track 2 planning, so that is part of what I'll be doing in the New Year, because suddenly the odds of track 2 being our reality seem a little firmer. I had been starting to think about a plan to return to normal life - work etc - but now I just don't know how think about this again given all the additional treatment and the associated uncertainty.
Cancer is a bastard.