We have been referred back to the Rad/Onc doctors by the surgeons after the RND on 7/6. Everyone keep saying they want to do more radiation/chemo if it's an option and if it's not an option, THERE'S NOTHING ELSE THEY CAN DO FOR US! This was first presented to us just 2 weeks after the RND and even though the surgeon said they think they got all the cancer, we keep getting this statement. Sounds to me like they didn't get it all and they know something they haven't told us yet? When Art had his 35 Rad tx they said it was the lifetime max, now we're going back to see if they can do anymore. Why would they pursue doing more immediately after the surgery when they haven't even done any CT scans to see if there's anything left? I'm really scared as I would think if this was merely precautionary they wouldn't be so adamant that IF THEY CAN'T DO ANY MORE RADIATION THERE'S NOTHING ELSE THEY CAN DO FOR US!
Is it usual to pursue additional radiation and chemo immediately after surgery even though there was a full course of treatment before the surgery???

Anyone have any helpful insight, would be really appreciated!
Jeani

My docs tell me radiation is only done once in my situation. A few others here have had it twice.

It sounds like you are running in circles and there is a lack of communication between doctors. Are you at a cancer center where they talk to each other?

I was also told 3 years ago when I had my rad that if I had a recurrence I could not take anymore rad as it would damage my blood vessels so much I would bleed to death. Again that was 3 years ago and since then I have seen a few patients that came to this site that did in fact get reradiated. Some after a few years and some in different spots so reradiation is not all together out of the picture.

Yes, why aren't they doing a CT or PET scan? And no, what you are outlining is highly unusual. Typically, you go back to doctors on a regular basis post surgery and radiation and their visual examination is enough. Pictures via CT and PET come months later unless they have an issue and if so they should certainly be telling you what their concerns are. Good luck.

Jeani

I know personally just how upsetting this can be as I was told exactly the same thing. I pushed back and found out the reason they wanted even more radiation and chemo was that my pathology report (not the CT or MRI post surgery which were all clear) indicated perineural involvement. Based on their experience, my RO, MO and ENT all said it was more likely than not that I would get the cancer back a third time unless I had more radiation and chemo. They used CyberKnife instead of IMRT so they could radiate the same tissues but from different entry points and angles. The inference is that it will come back without such treatment but I made them spell it out to me explictly
charm

I had a pet and a cat within a week after surgery at OSU, I have a list of everything they did and when.. MRI wasn't far behind the others either

We're at the VA and dealing with two different facilities as the one closest to us did the rad/chemo and the one in LA has the surgical center. The surgeon did tell me that they thought they had gotten everything with the surgery (were able to get clear margins) and this is just precautionary, if it's availabe to use it! But they haven't done any tests at all since the surgery, really haven't even looked at him closly so it's weird that this is happening this way? They've also referred us to chemo to see if those dr's want to do additional treatment...we'll see if there's any further explanation today (although the Rad Dr we see is very haughty and not too keen on conversation!)