Grade II Oligodendroglioma - Partial removal Partially Inoperable - Update/Advice

Been a while since I have posted an update on our situation, figured while I had a few minutes and my brain seemed to be on a somewhat steady rollercoaster today, I’d try and write.

We had our second opinion on Halloween (of all days) for Jordan’s remaining tumor and the wait and see approach. He weighed in again, and has gained another 4 pounds, weight wise he is healthy, defiantly has not had any decrease in appetite. We sat in the room and Jordan asked if I had my list of questions ready, my hand shaking a little I lifted the paper for him to see.

The doctor came in, checked him over asked him questions, everything normal and working properly. To look at Jordan, you would never know he had this happening to him. You would never know he had surgery, you would never know a thing! He pushed on his hands, pushed on his feet asked him a few questions and then turned to Jordan and asked “So what is it that you have been told so far, what do you understand about this cancer” Jordan looked shocked and described what he understood to be going on for about 30 seconds…. THIS SHOCKED ME. When Jordan was done, I told the doctor about the common “for dummies” book and asked him to explain that way and I listed off quite a few questions. This is what we were told.

His tumor is classified unique at the cancer clinic in Abbotsford, BC. It isn’t just one doctor giving the “wait and see” advise but an entire panel. Every week they take interesting cases and discuss them together, all 12 of them. Every appointment we have had, all of them have discussed. The remaining tumor is in what he described this time as the main highway of the brain. Right smack in the center, this is where the brain speaks to each side. No one has ever undergone surgery in this location and there is no way he ever will! They want to wait and see what the tumor tells them. Waiting until January for an MRI (this would be the first one, after surgery, for them to go off of every six months) will tell them 1 of three things. It isn’t doing anything, it is growing slowly or it is a higher grade now and growing quickly. The reason there has been no mention of radiation or chemotherapy at this point is as follows. 1) after genetic testing and such, it was shown that this tumor is not responsive to chemotherapy. 2) radiation in the area of the remaining tumor is dangerous as well. Jordan has had no headaches and no side effects after surgery, he is perfectly healthy and back to work, as I mentioned prior, you would never know anything was wrong. He asked us “why would you want to make yourself sick now? It seems as though the only way radiation is going to come into the picture is if it comes back in a new place or the spot that was removed or should it spread from what’s existing into a location they see as safe. Radiation would then come into play after another surgery, should that be a choice.

He told us the things to look for, should it be returning or growing, but seemed very positive and upbeat about Jordan’s health right now and over the next while. It is when they speak of the rate of it occurring again and the chances of it being a higher grade that you can see on their face and in there tone of voice… it is more than likely something we are going to have to deal with. It’s when Jordan asks flat out how long they think he has that the positive upbeat feeling disappears. Every case is different, yes, I know, heard that…. 10 years just isn’t enough, I know that is an average on many factors… but I just want someone to tell us how long we have, what to expect, what next, he seems great, he seems fine, when does that stop!

So we left the clinic once more with the same news we heard in the first place, wait and see. Jordan has gone right back to pretending none of it has happened or is happening and we live the little secret this has become. At first I refused to forget and not talk about it, now I find myself living this little secret as well, almost forgetting for a while until I look at him while he’s lying next to me, peaceful, content and looking healthy and wonder what our future holds.

I received an email from his mom today, asking me if I could talk to Jordan about maybe receiving a third opinion in the states. She sent me information on Cleveland Clinic with the cost and what we would need to do in order to have everything looked at there. She had forwarded an email the clinic sent to her with all sorts of information. After asking around a bit, I have heard they have a great reputation, and now I am dreading asking him to get a third opinion, knowing full well he is just going to ask “why” and try to forget I even asked three minutes later. Does anyone out there have any more information for me on Cleveland Clinic, has anyone been treated there? We are in Canada, and I have noticed that some things are very different, so I think it is worth a shot, the worst they could do is come back with the same advise we were given here. This is at a bit of a cost to us, so if it is something we are going to do, I would like to make sure we go to the right spot!

Thinking of everyone on this forum and thanking you for your continued support.

Ashley