Nov 04, 2012 - 12:25 pm
I have sort of an unusual question. Most surgeons these days do some degree of lymph node dissection during the staging surgery. I had discussed this prior to surgery with my doctor, and was very concerned about lymphedema, due to already having a lot of issues with my legs and feet. So we decided together that they would do a determination during the surgery of the cancer, and if it appeared to not extend past the endometrium, he would just take a few nodes out, he is doing some sentinel node studies, so would test for that and remove any strong positives, plus examine all nodes and remove any suspicious ones. If however the cancer had gone at all into the uterine wall, which is where chance of node involvement becomes far more likely, he'd proceed as normal. He did warn me that maybe 20% of the time, the initial results will get upgraded later, and he'd seen even endometrial only still come up with lymph node involvement. But based on the rarity of that, we felt it was a reasonable risk. Particularly since I had gotten to my doctor pretty quick after noticing symptoms so there was a strong feeling I was early stage.
Well, during surgery they did find me to be Stage 1A, so he took a sentinel node, and he also found a couple enlarged para aortic nodes and removed them too. But since he left everything else, and this is a very skilled and top notch oncologist so I felt he was pretty confident about the results.
Unfortunately though, my final results completely changed all this. I ended up having 30% uterine wall invasion, and worse, one of those lymph nodes had cancer. So now Stage IIIC. Even more scary, there was vascular involvement around that node. So the plan is as soon as I'm another couple weeks out from my surgery, to start rounds of chemo.
Here's where my question comes in though. My doctor had to cancel my initial follow up and move it back another week so I won't see him for more than a week yet. I am trying to decide whether to try and get in touch via phone to discuss possibly going back in to remove all the lymph nodes as he originally was going to do. I asked his nurse about it, but she said it wouldn't change my treatment plan. So I get that in terms of staging my cancer there is no reason to do it.
But here's the thing. There's a fair amount of research and evidence that removing a larger number of nodes through the pelvic area can have a pretty sizable effect on survival rates, in my stage of cancer, it looks to be about 20%. Some of that does seem to be just knowing to use a more aggressive treatment plan, but it does seem to have a noticeable therapeutic effect, which does seem to make sense, more chance of getting all the nodes that potentially have cancer and preventing spread from them right away. When you look at typical survival with this stage, in the past it has always hovered around 50% but with the full node dissection that has raised to mid 70's or so.
I expect it's exceeding rare to go back in after the initial surgery, but given how quickly I recovered and how well I seem to tolerate surgery, my youth and relative health, if this would ever be done, I expect I would be the one to do it one.
But it would delay starting chemo so I also wondered if we could a scan, I know CT or PET scans are typically done to check for cancer cells but wondered how accurate they are, particularly when we are not expecting to find any macroscopic levels of cancer, particularly outside the pelvis. I would think if the cancer is contained still to the pelvis, it would be worthwhile to consider doing the lymphedectomy, if it's already moved beyond it, my prognosis goes way down anyway and getting into chemo ASAP would be the way to go.
What do you think, has anyone heard of doing this? Clearly it's going to be very rare, given that most uterine cancer patients are much older than me, so higher surgical risk factors, and it's only fairly recently that much of this information about the therapeutic benefit of the node dissection has been coming up.