New to this

  • 93 replies
  • 73 subscribers
  • 4412 views

My time line so far   

Hospital referal                         27/10/2023

Endoscopy.                               08/11/2023

Ct scan.                                    09/11/2023

1st clinic with specialty nurse   22/11/2023

Pet scan.                                  24/11/2023

now waiting for results following the next mdt meeting next Wednesday.

I’ve been told to expect treatment plan of Chemotherapy followed by surgery and then more Chemotherapy 

To say I’m worried is an understatement 

  • Hi Paly,

    My dates are somewhat similar;

    12th Oct - GP referral

    19th Oct - endoscopy & CT scan

    1st Nov - PET scan

    7th Nov - meeting with MDT (about 3.5hrs in total)

    15th Nov - laparoscopy and second endoscopy

    30th Nov - appointment with oncologist to outline treatment plan. Have already been told it’ll be chemo, major surgery then more chemo. Worst part is all the waiting around in between appointments and procedures. Trying to stay positive and keep myself as fit and healthy as I can and make sure my weight doesn’t drop too much. Hope you can do the same. Keep in touch…

  • Hi Paly

    My husbands timeline is about the same as yours. He starts the first round of chemo on Wednesday, I understand the worry we feel the same but are trying to focus on the positive that they can actually do something. If you need to chat feel free.

  • Hi Paly, I have same condition but a bit further along. I'm in the middle of my last chemo post op.

    Click my profile if you wish to read my story so far.

    Regards

    Geo

  • Hi   my partner has a really similar diagnosis and timeline to you. Hope you are coping okay. 
    have you been given a date for when your chemo will start? 

  • Hi Dankate,

    No start date yet but I have my first oncology appointment on Thursday so I’m hoping I’ll be given one then. I’ve been told by the OC nurses that it’ll probably be either 7th or 14th December and then every 2 weeks after that. Not sure which would be best in terms of having an enjoyable Christmas. If I start on the 7th, then my second session would be 21st. From what I’ve read about other people’s experiences, it’s the first few days after treatment that any chemo side effects seem to be worst. Saying that, I will of course take the earliest start date I am offered. What has your partner had done so far in terms of tests, scans, etc?

  • Oh okay, fingers crossed for you that you get the earliest date.

    My partner has had;

    endoscopy - 23/10

    CT scan - 24/10

    PET scan - 4/11

    MRI - 5/12

    Laparoscopy & 2nd Endoscopy - 16/11

    Oncology- 21/11

    PICC line - 24/11

    his Chemo doesn’t start until 11th Dec and it just feels like the longest wait as I’m so scared the tumor is growing and could spread in this time but we have been told that unfortunately they are just really busy.

    His staging confirmed T3N1M0, he is having 4 rounds of Flot chemo then hopefully surgery around March. 

    have you healed okay from the stomach surgery? My partners is infected, he has been on antibiotics but still doesn’t look great. 

  • That was very quick from laparoscopy to oncology. Seems strange that they are putting the picc line in over two weeks before the start of his chemotherapy. I thought it usually went in a couple of days before or even sometimes on the same day as the first dose. I didn’t have any problems after laparoscopy apart from the usual pain in neck and shoulder from the gas they use. I have three tiny incisions in my stomach which are healing nicely. Had to wear surgical stockings (very sexy lol) and give myself daily injections for 10 days afterwards. I too feel that every day counts. I don’t know that the swallowing is getting noticeably worse but, although all tests so far haven’t indicated any spread, I do worry that the longer I wait the more chance there is of this happening. What age is your partner? I’m 59 so probably in the lower end of the profile normally affected by this partycsncer

  • Yes we did wonder why they did the line so early, especially as he now had to go and have it flushed once a week. 
    Have you been told you staging yet? 
    yes, I think he was just lucky that he got to see the oncologist early as the doctor was ‘on call’ when and they just managed to get him to come and see my partner while he was at the hospital for a different appointment. 
    My partner is 43, so as I’m sure it is with everyone was a real shock when we found out. He is ‘zero’ risk as doesn’t smoke, casual drinker, he is not overweight, he actually is usually really fit and goes gym 3/4 times a week and runs etc but I guess these things just happen to anyone. 

  • Wow, 43 really is young for this. Apart from age, I am of a similar risk profile to him. Non smoker, occasional drinker, pretty fit and healthy and not overweight. I haven’t been given any staging at all yet (unlike a lot of other people who seem to have been told theirs from quite an early stage). I just feel in a real limbo at the moment waiting for things to happen. Hard to motivate myself to do very much. Luckily I retired a couple of years ago so at least I’m not having to juggle things around work commitments