Laparoscopic staging worry

Good morning everyone 

My husband has got his laparoscopic staging on Friday. To be honest I wasn’t worried about it too much but since seeing the oncologist today they’ve basically said if they find anything then he won’t have the surgery and will only get palliative chemo. I had no idea how important this operation was. We are so worried now. My husband was T2N0M0.  Can anyone please give me some advice on this please? He will be having 9 weeks of EOX but they’ve said he has to have a heart ultrasound now. Can anyone please help ? 
Thank you 

Judy 

  • Hi ,

    laparoscopic staging surgery is common in many trusts for esophageal cancer. When I had stagibng surgery last year I was told it was to stage my cancer more accurately and determine my tolerance to aesthetic and surgery, I was staged T4N2M? prior to laparoscopic staging. They discovered that my tumour was laying on my diaphragm and had not spread to my diaphragm so I was re-staged T3N2M0 and offered a curative treatment (FLOT --> surgery -->FLOT). So laparoscopic staging surgery saved my life as I am now in remission!.

    I also had to have many tests on my heart as I was originally mis-diagnosed as having had a heart attack until (another hospital) found my tumour. 

    I remember not only having heart ultrasounds but also a tumour ultrasound which I had under general anaesthetic (thank G*d) as I saw the size of the probe they wanted me to swallow!

    Until your doctors can accurately diagnose your cancer they can't put a treatment plan in place. 

    Hope this helps?

  • Thank you for replying to me. I just get so confused about it all. I asked them if they were going to look at the cancer and they said no they are just going in outside the stomach to make sure there are no cells floating about that the pet scan didn’t pick up. 
    I do wish they told you exactly what things are for because we weren’t worried about this until they basically said if they find any cells outside then he will only have palliative chemo and not the surgery. I feel like we get lifted then dropped on our heads from a great height. However said that this journey is a rolls coaster certainly knew what they were talking about. We are now scared they will find something and not offer him the surgery. He was staged at T2N0M0. I hope that is still correct and nothing has spread. 
    we feel so let down because his endcopy results went missing and he was forgotten about. I’ve taken this up with the hospital today and they are looking into it. 
    They also said depending on the result of this he can get Christmas over then start chemo. I made it clear that Christmas meant absolutely nothing to us and we don’t care if my husband is feeling rough and in bed Christmas Day due to chemo side effects. We just want to start treatment. Fingers crossed it hasn’t spread since the since pet scan. 

  • There does seem to be different procedures in different hospitals and different parts of the country. I live in Scotland, in July 2016 I had an endoscopy and was told within an hour that I had a tumour. About a week later I saw the consultant surgeon and the following week saw the oncologist. A week later I saw the oncologist and decided not to have chemotherapy and radiotherapy. I had a CT scan and a Pet scan over the next few weeks. I was diagnosed as T3 N2 M0 staging adenocarcinoma at the stomach junction, which is quite common. I paid no attention to the size of the tumour and other details, I had a general fitness test and ECG. The surgeon said I would have to decide soon if I was going for the surgery as I was losing weight fast. I had no other tests or exploratory surgery and had surgery on 3rd October and I have been doing fine over the last 3 years. I was 57 years old and had been a smoker for about 45 years. Good luck and kind regards Frank.

  • Hi Judy

    They said exactly the same to me when I was first told I had definitely got cancer. I was staged the same as your husband at T2N0M0 but they said that after the PET scan and laparoscopic staging if they even saw a hint of anything anywhere else they wouldn't operate and I'd be looking at palliative care. They did say though that they didn't expect to find anything else but had to do the further tests to be sure. 

    Fortunately they were right and there was no sign of anything anywhere else so I'm now on a curative path and will be having the surgery next month. 

    The initial stages of this journey were by far the worst for me. The fear of the unknown was overwhelming. We have to try and stay strong though as mental strength is very important in this situation. Easier said than done, I know (I could have easily thrown in the towel several times already) but not letting it win mentally has helped me immensely recently.

    Hopefully your husband will get some news tomorrow, I was told the outcome of the laproscopy on the same day, before I went home from the op. The only thing they couldn't tell me was the results from the cell collecting 'wash' as that had to go to the lab for testing.  

    Fingers crossed for you both

    Deb

      

  • Thank you for your reply Frank. 
    Im starting to feel like they don’t want my husband to have surgery. They keep cancelling appointments and then add on these extra things. My husband doesn’t drink and has never smoked. 
    I just wish they weren’t doing this operation tomorrow because I feel they are only doing it to try and stop him from having the operation to save money. 
    I can’t understand why some things are different. I just want him to have this chemo and surgery. I’d rather him just have the surgery to be honest because again I feel like they are pressuring him to have the chemo hoping it won’t work and by the time the chemo is over it may have spread and they won’t operate on him. I have lost faith in our hospital because of the delays and reports going missing. 
    I made a complaint yesterday and it’s being taken seriously and I’ve been assured that it’s being dealt with. Although I did say I’d rather them concentrate on getting treatment for my husband and then we can look into what mistakes were made later. 

  • Hi Judy

    These are without doubt worrying times but from what you have described, your hospital are following the correct procedure for this situation and indeed the exact same procedure that my hospital followed with me. 

    Please be assured that they are not trying to cut costs and they definitely won't be hoping that any treatment fails. What they are trying to do is reach the best possible outcome for your husband but they can't do this without all of the facts i.e. results from the staging laparoscopy etc. 

    They are recommending chemo as statistically patients who have had chemo as well as the surgery have a better future outcome than those who proceed straight to surgery without any chemo. My oncologist did go through all the statistics with me but I forget the exact figures just now but there was enough of a difference for me not to hesitate to go forward with the chemo. We are all different though and we don't all want the same thing.

    Please just be 100% sure of any decisions you make and remember that the hospital's aim is to reach the best possible outcome for your husband and nothing else Slight smile.

    Thanks

    Deb 

        

  • Hi Deb

    Thank you so much for your reply. I’m hoping and praying that Rob has the same results as you. Can I just ask how long did the laparoscopic staging operation last for? Is it all day in hospital? Also did you choose to have chemo first or go straight for surgery? If so did you have 9 weeks chemo and did it shrink the tumour? 
    We are seriously getting to the point where if tomorrow goes ok we might ask to go straight for surgery because we are so scared they will then say you’ve lost weight from the chemo so you’re not well enough. So sorry for asking all these questions. We feel like a deer in headlights. This is just awful. 
     Thank you 
    Judy xx

  • Hi Deb

    My head is all over the place and I’m obviously not thinking straight. Thank you for putting things into perspective for me. These are worrying times and it’s certainly got into my head and sent my mental health crashing to the ground. I think if all goes well tomorrow we will proceed with chemo which we did decide on before anyway. 
    Wouldn’t it be nice to just go into a deep sleep and the next year be over with a fantastic outcome. 
    Thank you again for replying. I’m so glad I have joined this site as so many people have been extremely patient and given me some good advice. I understand everyone is different but it definitely helps hearing other peoples journey 

    Judy x

  • Hi Judy

    The laparoscopy procedure itself only lasted 30 minutes but I was at the hospital for about 5 or 6 hours in total. It all depends where you are on the surgeons list that day and how long you take to recover from the anaesthetic. I was first on the list and was up and about quickly afterwards.

    I'm having the chemo. 4 x FLOT sessions, each 2 weeks apart. My 4th and last one is tomorrow. My belief is that it has shrunk the tumour as since I've had the chemo i no longer have any problems with swallowing food which I did before. I have a post chemo CT scan next week which will show the surgeon exactly what changes the chemo has made and I see the surgeon on 23rd December to get these results and to discuss the op.

    I think everyone on here will understand 100% what you are going through and how it affects mental health so please dont apologise, you wouldn't be human if you weren't worried! I had my share of meltdowns I can tell you. 

    I'm glad the forum has helped you, there are definitely lots of people here with plenty of experience who are always ready to help. 

    Let us know how it goes tomorrow.

    Take Care

    Deb x x

  • Hi Deb

    thank you again for this information. Oh that’s so good that you can swallow again, that does sound like it’s shrunk. Robert so far doesn’t have any symptoms at all. He can eat anything! Although we have completely changed our diets and lifestyle to keep fit and well. It’s certainly given us the kick up the backside we needed. 
    The oncologist mentioned EOX chemo so I’m not sure if that’s the same as FLOT. 
    I will post again regarding his results. I can’t tell you how much talking about this on here really helps. Our families just don’t understand. We can be in a room full of people and yet feel so alone. I bet everyone on here felt like that. 


    Judy. Fingers crossedFingers crossedFingers crossedMuscleMuscleMuscleMuscle

  • Hi Deb

    just wanted to update you. Rob has his staging surgery today and they couldn’t find anything! We are so pleased. We’ve still got to wait for the biopsies but for now we are relieved. He also has his heart ultrasound in the morning so hopefully now things can move on a bit. 
    Judy xx

  • Hi Judy 

    That's brilliant news, so pleased for you both! Fingers crossed the rest will be clear too but it's a fantastic start.

    Things are moving forward, you'll get there. It's tough but hang in there!

    Keep us posted.

    Take care 

    Deb x