Not the news we were hoping for

No cute headlines this, no beating around the bush; I’ll get right to it. My last CT scan did not go as we had hoped. Two hours after I left the hospital I got the dreaded phone call – “They saw something on your scan and want you to do a PET scan before you see Dr. Lange next week.” They scheduled the PET for last Friday – this was my first PET scan and I was happy to learn that all I had to do was not eat or drink for 6 hours before it, no other prep. So I did just that and went to work Friday assuming I would leave at 11am for the noon scan. Phone rang at 10am, the machine was broken and they were going to try to fix it, so don’t come, but don’t eat either cause we want to fit you in, we cancelled all the other scans for the day, but the doctors want yours done. (Yes, this did cause me some additional anxiety). In the end they were unable to fix the machine and the scan was moved to Monday morning.

I went in first thing Monday, got the radioactive injection, sat around for an hour, and then had the 26 minute head to knee cap scan. I think I actually fell asleep so I guess I was relaxed. The promised to have the results by my 3pm appointment with Dr. Lange.
At 3:30 when I was finally ushered into an exam room, Dr. Lange was empty handed – the results were not in yet. So he placed a phone call and began the discussion with us. Even without the PET results he felt confident that this was a recurrence, the CT showed something on my bladder that had substantially increased in size since my last CT in August. It now measured 22x19x26mm so it’s small, but again it’s the location. They were hoping the PET would be able to tell if it was hovering near the bladder or actually on it. My blood markers were all over the place, some were up, and one was down. What this means is anyone’s guess, but the fact that they had been rising lately suggests this tumor had been growing since at least April. Given its current small size this could mean a slow growing tumor.

The results came in about 20 minutes later and just confirmed what we already knew. The suspicious spot near the bladder was alive, hence tumor. They could not tell if it was attached or not, but we have reason to believe it is. And my bladder is already pea sized (OK, not quite pea, but it’s tiny) so chances are that this tumor will end up costing me my bladder. I can’t say for certain yet because everything was sent off to my surgeon Dr. Nauta and we are still waiting to talk to him and get his input on the whole situation. This may not be until after Christmas, which is fine by me because we can’t do anything until January at the earliest anyway.

I can say for certain is that I am only experiencing minor symptoms from the tumor. Lately I’ve had twitching, uncontrollable muscle spasms in my right leg that have kept me up at night and sometimes really annoyed my seatmates on the train home at night. We think this may be the tumor pressing on a nerve…lovely – I just got use of this leg back!!! I am not having any problems with the bladder itself, no urgency, no pressure, no having to go 20+ times a day (if only I could my other end to slow down….). So this is all good news. The tumor is small and not problematic yet. Not sure what this means in terms of options.

I’m going to sign off here because I don’t really have much more to add. I will post again after I talk to Dr. Nauta and have a better idea of what the plan may be. In the meantime I’m going to enjoy the beautiful winter weather, watch Pat do some much needed skiing, and wrap a bunch of Christmas presents.

Thanks for your prayers and well wishes – as always they mean the world to me. Merry Christmas one and all.