LoraCF wrote:My partner had what everyone thought was a #C rectal tumour. He had the usual treatments: chemo and radiation pre-surgery, then surgery to remove the tumour, plus what was supposed to be a temporary illeostomy, then 6 months of chemo. He was declared NED at the end of February 2016. There was no lymph node involvement.
He complained of lower back pain for months afterwards and finally his surgeon set up a PET scan, which showed a single small tumour on the sacrum.
After an inexcusable wait for some mysterious reason known only to the doctors on his team, it is now 5 months later and the tumour has doubled in size. The surgery we've been told about, a sacrectomy, sounds as though it would be life-destroying.
Has anyone here either had this surgery or known someone who's had it?
On my original PET, I had a lymph node light up near the sacrum. I was told that this was out of the scope of the APR surgery, and we would have to check it after treatment. I was told this area has so many nerve endings, there is a great risk of being paralyzed. It's pretty scary stuff. After treatment, we couldn't get insurance to approve a PET to check it, so I was left in limbo for almost a year until I suggested we check it with an MRI (that I had read about on this board). While I was waiting, I asked what my options were if the lymph node was cancerous since surgery in that area is so risky. One option was Gamma Knife, which I had read about so that was very encouraging. My MRI was clear.
During that time, another poster on here had 2 lymph nodes light up in an area in the pelvis near an artery. Their surgeon wouldn't touch it. They had to talk to many different surgeons before they could find one willing to tackle it. They finally found one, and the cancerous lymph nodes were successfully removed.p with no damage.
The delay may be from the lack of being able to find a surgeon willing to do the surgery. But you and your partner should not leave your fate in someone else's hands. Get 10 additional opinions, or 20, if you need to until you find the answer your are looking for. Is Gamma knife an option? Not all cancer centers or Oncologists have Gamma knife, but it is very effective in delicate areas like the brain. I'm sure having a life period trumps even a difficult life with paralysis. Mwny surgeons won't take the risk, but I would have if that was my only option to live and would have kept looking on my own if my oncologist told me he couldn't find one willing to do it. Start making phone calls and setting up your own consultations. Go to every major cancer center in your area, even if you have to go out of town. Find out what kind of surgeon does that surgery, and search high and low for one who has already done this successfully. You literally have to take your life in your own hands.
Also, you may have better luck with a younger surgeon trained in robotics. Older surgeons can be like dogs who can't learn new tricks sometimes.
I have never read any posters on this board who have had the surgery. Like I said, you should be able to find a surgeon who has done it, and can ask them more about it, especially the best case scenarios. I would talk to several oncologists also and see if there are other options like Gamma knife.