no treatment started yet, diagnosed 2cm tumour 10th july, this limbo is awful

Hi Jules You are really going through it. One cancer followed by a second one*. If you are on the standard pre-surgery programme that I was on and I emphasise the if, then I think you will find you have one chemo session slotted in every week together with the radiotherapy. I had to wait 4 weeks post diagnosis for the radio/chemo to start. However your programme is not quite the same as mine as I had 28 radiotherapy sessions so your chemo programme could be a bit different. In my case there was a 12 week gap following completion of  therapy treatment and the operation.  Just before the op. I had another CT scan.  I hope this helps in some way to indicate the timing which I think is the basis of your question and concern but this should be laid out for you in some detail by your team. Hope all goes well for you. If I can help with anything further please ask but as we all know the journey can be very different for each individual so I can only help by describing mine. 

* Yes I have had a similar experience with this issue as well but in my case prostate.

Hi Jules. I’m very conscious of the fact that you’ve had so much treatment over the past year or so, so I don’t want to cause you any more confusion, but I didn’t have the Flot treatment as my cancer was Squamous Cell Cancer, which occurs higher up in the Oesophagus. I had 4 x Chemotherapy infusions (every 3 weeks) over a 12 week period plus Chemotherapy tablets twice a day every day for these twelve weeks. At week seven I also started daily Radiotherapy treatments (excluding weekends) for 5 weeks. I then waited 10 weeks to have my operation.  However, it would seem that you are saying that Chemotherapy and Radiotherapy start immediately for 7 weeks, which makes our treatment different. 
Please be comforted that although we often receive similar treatment, it does often vary. Keep on doing what you’re doing by seeking help, advice and reassurance through this forum. Thinking of you. Julie 

Hi Jules, I also had squamous cell cancer of the oesophagus but my treatment sounds similar to yours. I had five weeks of chemo/radiotherapy; five weeks of weekly chemotherapy and radiotherapy Monday to Friday each week. So five rounds of chemo and 23 radiotherapy sessions altogether. Three weeks later I had another PET scan and three weeks after that I had 3 stage oesophagectomy with robot. I tolerated the chemo/radio quite well, didn't need a feeding tube although swallowing did get more difficult towards the end of that treatment due to the radiotherapy. I was diagnosed at the beginning of November 2023 and treatment started in January 2024. Like you, I found the waiting very hard. As I am under three different NHS trusts for treatment/follow up, it was difficult sometimes to know who was doing what at the beginning. 

I hope your treatment starts soon, the waiting is horrible.

Best wishes, Mutti

thank you Mutti, that really helps, they seem more focused on the feeding tube, that in one meeting i was told when its in, it will be attached immediately, then on the last meeting which was to say distressing and so confusing to say the least, was told they will fit it, if you need it fine, if you dont then dont use it.  i dont want to go under surgery for something that i may not need, and at least not before knowing my treatment plan and start dates, was told initial op for tube and laparascopy this thursday, no one has called, cant do that date any way, had heart and lung echo scan yesterday no idea why, so more worry, only one sliver of light my 1st year mammogram came back with no changes since one taken last year, so thank god not 3 out of 3, thank you for your experience, will leave message for nurses today to try and make some sense of this.  i have lost weight, but recently its down to the total stress of this whole scenario.

thank you Mutti, as i understand it this cancer is awful and recovery is long, havent even thought about work and finances when ssp stops, another thing to sort when timing is right

Hi W1cky I just wanted to share my experience over feeding tubes.
When I was first diagnosed they spoke about feeding but because of my age and weight they thought I wouldn’t need it. Oh how they was wrong…

I had all my pre ope stuff done including my staging ect. Then my illness progresses even had trouble drinking, I put it down to the prodding and poking around that made it worse. however by this time I had to have an NG (nasogastric) fitted because of the tumour they couldn’t fit a NJ (nasojejunal) so was stuck with this as my only option, 3 times the tube came out and every time had to be reinserted via endoscopy, not a good thing on a week end.

its a decision if I had to make again I would have had the PEG feed only because I ended up having it anyway. Although saying all this I think there is a time limit on a PEG feed  

Just something to consider

Hope all goes well, and love the T-shirt idea  

thank you clive d, and every one else, the limited options of feeding is killing me, but another issue is i either feel so angry or so scared, miserable, there is no inbetween, which of course is having a massive effect on things/relationships at home, no kids just us 2, and the fall out is worse than dealing with my low weight and the cancer being back, ironically its 1 year today since i heard the words about how they were going to remove my breast, and a few years earlier, this is also the day i had the call to say my mum had passed away suddenly.  think its all just a bit much trying to hold it all together, and i havent started treatment yet.  pre radiotherapy ct scan 3rd, and laparoscopy, jpeg tube 10th, with overnight stay terrified.  im struggling so hard to even try to be positive.   thank you all for you wise and kind words xx