Stage Four diagnosis - is there any way back or are we just holding back the tide?

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HI all,

I love reading all the positive comments from everyone on here.

I was referred to the One Stop Shop at St Thomas' in September to assess whether chemo and surgery or just surgery was the way to go when I received the devastating news that the PET Scan had picked up metastases in my liver which had not been seen on my Ct scan. No surgery and referral for palliative chemotherapy only.

The consultant Oncologist floored me not only with his prognosis but also the cold, blunt way in which he delivered it. Thankfully the lovely oncology nurse reminded me that his data is based on averages and that I am not average ( age, general health, active lifestyle, great support from family and positive mental attitude all being on my side). 

Just starting my fourth cycle of CAPOX treatment I feel better than I did before I was diagnosed and am suffering minimal side effects, still working and coming up for a review with my oncology consultant - thankfully a new one - early in the New Year.

After all this preamble I guess what I really want to know is whether I could be looking at a reversal of any of the existing tumours or the best I can hope for is no further spread? I know we are all different and have different experiences but I would really appreciate hearing from someone with similar experience to mine.

In the meantime I wish everyone a Merry Christmas and all the best in the New Year.

  • Hi Angie

    How are you both doing. No news on when chemo will start? I would like to think it will be soon.

    My surgeon called yesterday and said firstly I can now drive which is great and secondly I have been selected to go on the SARONG trial which means I will be monitored for the rest 3 years and have scans every 6 months for that period.

    He explained that after the 3 years if I'm clear of cancer there was very little chance of the cancer coming back.

    So I guess my journey got a whole lot longer but it's good to know I will be closely monitored and that if anything shows up they can deal with it

    Stay strong and I hope you get answers soon, always here to talk

    Dean

  • Hi Dean

    We are doing ok thanks, staying positive and strong.

    Still awaiting appointment with oncologist, I hope they call soon and then chemo can finally start, the waiting since December has been horrendous its certainly been a roller coaster of anxiety and upset.

    So glad everything is going well for you your journey gives great hope to other people.

    Angie

  • Hi Angie

    That seems a long time to be waiting for an appointment. I know lots of people are waiting but I thought the cancer pathway was meant to be quicker.

    I'm not surprised it's been stressful for you as the not knowing is the worst part.

    I really hope they get in contact soon. You could try the PALS team (patient liaison team). Every hospital department has one and they can usually find out information for you

    Wish you all the very best

    Dean

  • Hi Angie

    Have had my second round of chemo today. There was a delay of 3 hours so by the time I had treatment it was a 6 hour day! Infusion takes 2 hours. I felt like I knew what to expect this time. Have painful pins and needles down my left arm but these slowly get better over the next week or so. 

    I was eventually diagnosed 1st Dec, referred to Oncology on 4th Dec and had first Oncology appt on 20th Dec where I was put forward for chemo. My first chemo was 30th Jan which in my eyes is way too long. I constantly rang MacMillan nurses, consultant and complained to PALS but it made no difference. It is a relief once first treatment session starts and the waiting can drive you insane. 

    Anyway once you have your first session of chemo you know what to expect. I hope your husband hears very soon.

    Carole x

  • Hi Dean

    So pleased that you are on the right track. I presume your OC was just in the one place? I was initially told no surgery but we asked consultant on Oncology Ward if I had a good chemo response could surgery possibly be an option and he said absolutely, so will just have to wait and see. 

    I wish you all the best. Take care.

    Carole

  • Hi Carole,

    Are you having fatigue or sickness after your chemo? It seems like it is going well for you.

    You had a long wait for chemo to start, I am going to chase my husbands appt up tomorrow, it worries me how long they keep you waiting and how the tumours could be growing in between.

    The waiting is the worst bit and I know my husband just wants to get started now.

    Also I am dreading meeting the oncologist, our consultant told us he can be very blunt with his prognosis which we do not wish to know, just take each day as it comes.

    Take care

    Angie x 

  • Hi Angie

    I did have some fatigue for a few days after which slowly improved after about a week. They give you anti sickness pills to bring home for the the first 3 days after and then more anti sickness pills to take when you actually feel sick. I do have nausea sweep over me now and again.

    I totally understand about the worry if it is spreading further. It's cruel to keep people waiting for so long. Whilst waiting my symptoms of swallowing got worse and in the end I was only having liquidised food and had no appetite. It has eased a little now since starting treatment and I can now managed certain mushed up foods if I am really careful.

    Yes I would chase it, at least you are doing something constructive. Good luck.

    Take care.

    Carole x

  • Hi Carole,

    My husband just has horrendous back pain which they have upped his morphine for to help him sleep better. He only eats mushy foods like shepherd's pie or soup, anything hard gets stuck and he brings it back up.

    How many cycles of chemo will you have?

    And can I ask are you still able to work at the moment?

    Take care

    Angie x 

  • Hi Angie

    I was on codeine tablets fro 3 months and not very good constipation tablets that built up in my system. They sent me down the hospital thinking it could be a bowel obstruction but thankfully it wasn't. It was a nightmare.Stopped taking them immediately and the hospital prescribed morphine. My GP seemed reluctant to give me this for some reason which would probably have prevented the problem.

    I will be having 8 cycles every 3 weeks over 6 months and tablets at home.

    I actually work for the NSS and have been sick since 8th Nov when had endoscopy and oesaphageal tumour was detected. Luckily I am on full pay for 6 months and then half pay.after. Have been told I could get PIP by MacMillan nurse who referred me beginning of December but still not heard anything.

    Hope this helps.

    Take care.

    Carole x

  • Hi Carole

    Yes my OC was in just one place but as part of tumour was on outside lining of stomach they done a gastrectomy on Jan 5th which my surgeon says was very successful as they got all the cancer and histology showed only 1 lymph node out of 68 removed was bad.

    My post op chemo starts March 18th

    Your wait to start chemo seems too long, I was lucky that most of my appointments and treatments have been done in 2 to 3 weeks windows.

    I will be monitored on a new trial called SARONG for next 3 years and if I'm clear by the end of this period the chances of the cancer returning is very low.

    I managed to get PiPs as I'm self employed so be patient it does take a while. If you are refused try again because it sounds like you have a good case

    I do hope the chemo gives you a chance for surgery, good luck

    Best wishes

    Dean