Hi Lakeswim !
My doc initially arrange only for a 4 months interval check (MRI + Flex sig) stating that's the standard protocol time. but I was sure I read something from one of Dr Angelita's paper that a regular 2 months check was required for WW, I am already mentally exhausted these days and didn't press on further. My husband however wasn't very convinced about a 4 months gap and kept questioning him about the long wait (but what do we know!)
The doctor kind of relented and we came to a compromise of seeing him in 2 months time for a tumour site check and if things doesn't feel good up the rectum, he can then accelerate the MRI + Flex sig tests. If all is good, we will see him again at the 4 months mark to then do the MRI + Flex sig. I felt a little more reassured at this arrangement.
He explained about the concept of a reasonable amount of time to see him again. In the event that the tumour decides to flare up, it will actually need time to do so and produce enough visible signs and signals for him and also for the machines to catch it. Hence it can be futile to do an MRI check every month ! According to his experience, he felt that a 4 months interval is a good time for him and the machines to catch any signs of recurrence.
So your 4 months interval isn't really too far off from my doctor's concept of WW. It looks like different doctors prefers a different mixture of diagnostic tools at different intervals. If your team is experienced enough with WW, I guess you don't have much to worry ? Perhaps it might be good to hear of what sort of wait period do other WW patients get - something I'm very interested in.
Any chance that you can be a little persistent in narrowing those waiting gaps with your team ?
I had no concept of TNT - I wished I did so I can then question the CRT that was provided to me at the beginning. When I was first diagnosed and started CRT I didn't even realised what it actually involves as everything moved so fast ! I'm fortunate enough to be admitted into a private facility and everything was moving at lighting speed - I already had a treatment plan sorted out by the 3rd day after my diagnosis and I was in CRT the following week. To put it simply, I didn't have enough time to research on my own after my diagnosis !
It was only halfway through CRT that I realised that I will need a temporary stoma after going through surgery. I discovered only much later what LARS means and how it could potentially affect me for the rest of my life ! My mother had colon cancer and there was no stoma or LARS involved and I just assumed it was going to be the same for me. Little did I know rectal cancer is a whole different game of it's own !!! My radiation doctor was later shocked to know that I am considering WW and said that if that was the case, he would have increased his radiation dosage - but I was like.... NOBODY TOLD ME ABOUT LARS AND STOMA BAGS !
If I had known, I would be adamant in increasing whatever needed to be increased and taken whatever needs to be taken right at the beginning. I guessed that's becasue WW is still barely accepted by every doctor, let alone TNT for me ?
Anyway, just grateful to be on WW and one can only hope it doesn't return and if it does I can only tell myself I gave it my best shot for what is being served.
Not to change course, but I am interested in the W&W-ers on here.
* Do certain (spicy?) foods affect how your rectum feels?
* Do you have more "awareness" of your rectum since radiation?
My rectum seems to rumble a lot more than before after CRT ! Is that your experience too ? I get the feeling that I'm often reminded that there's food and waste "down there" ! Lol. I'm don't know if the rumbling activity is caused by spicy food or not but subconsciously I have started to avoid or take less heavy greasy flavours and food including spicy stuff.
I think I could relate to your rectum feeling a little different. Just a few weeks ago, I was still pooping mucus from the radiation. I was also taking a lot of probiotics which made me went to the loo more. I then found spots of fresh blood on the toilet roll from the surface of my anus where there was like a tiny bump - I suspected either hemorrhoids or effects from the radiation. A somewhat slight stinging feel when I pass motion. A week or two later, it went away. I didn't think it was an issue as all my scans came back okay so I put it down to the radiation effects.