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  and a very warm welcome to the online community which I hope you'll both find is both an informative and supportive place to be.

    I'm not a member of this group but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list.

    It would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    I hope you have a relaxing Christmas and New Year.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi CFG1961, I am in exactly the same situation as yourself. I was diagnosed with oseaphagus stage 2 cancer in November but they were unsure whether it had spread to my liver or not as the CT scan had a discrepancy. I was then sent for a PET scan and an MRI which confirmed that it had and was now classed as stage 4. I was also floored at how this news was delivered to me and the prognosis in such a statistical manner, with my son and daughter sitting next to me! I was told that I would now be having chemo but no surgery.

    Anyway to bring it up to date I had an appointment on the Oncology Ward this week re my chemo which should be starting in January, no date given yet, my doctor there was much kinder and positive and said that chemo can give excellent results but that everybody's body responds a little differently. We even enquired whether, if things went well, if surgery could be considered in the future and he said absolutely which gave us some hope. 

    I was pleased to hear that your chemo went well and you are even working as I don't really know what to expect. 

    Anyway Merry Christmas everybody!

  • Hi Wigston,

    Thank you for replying. Our stories do sound very similar… Thank goodness for the staff on the Oncology Ward, they do seem to have a much gentler way of treating us!

    I had my CT scan this evening and will find out what that shows at my review with the oncologist on 5th January. This is due to be a telephone consultation but i would really prefer face to face. It will be much easier for my daughter to be part of the process if we are all sat in the same room together rather than she and I sharing a phone.

    I hope you have a great time with your family over Christmas and don’t worry too much about your upcoming treatment. When you look at the pages and pages of potential side-effects, just take the leaflet out of a packet of paracetamol and look how many there are on there.

    One further piece of advice - all the websites seem to suggest taking almost a suitcase full of stuff with you into your chemo sessions. The first time i went i could see the knowing looks of “here comes the newbie!”. My infusion time is 2 hours, so a total stay in the ward of approx 3 hours. A bit of texting/phone time, a cup of tea or two, a trip out to the loo and a little Nanna Nap soon fills the time. All I take now is my phone, a bottle of juice and a blanket crocheted by one of my daughters - not because i particularly need it, but because she made it specially for me!

    Wishing you all the best.

  • Hi CFG1961, thank you for the reassurance about chemo, it has helped me to feel much better about it as after reading about all of the side effects I did feel a bit anxious, I guess as you say a list of side effects comes with every medication! I just need a date now asap.

    Good luck with your appointment on 5th Jan and it's great that you are feeling good in yourself.

    I wish you and your family all the best.

  • Hi Wigston,

    How are you doing, and how is chemo going, my husband has OC spread to liver.

    We are just awaiting oncology appointment.

  • Hi CFG1961,

    How are you doing and how is chemo going?

    My husband has OC spread to liver.

    We are just awaiting oncologist appointment.

  • Hi A1972, sorry to hear about your husband. It was quite a shock diagnosis as had had indigestion on and off for some time. Went to GP asking for xrays but they gave me Lansoprazole and sent me for physio as had pain in my neck and upper back but had a desk job so accepted this. Eventually sent for chest xray which was clear, then breath test which was fine then eventually endoscopy. Wish I had insisted earlier on but accepted what they told me. Anyway am having my second round of chemo today and take tablets at home. Still difficult to swallow but it may have eased very very slightly. Anyway I hope your husband hears soon re his appt with oncology. All the waiting is absolutely agonizing. Good luck and let me know how things go. Take care x

  • Hi Wigston,

    My husband had upper back pain and pain under the ribs for months went to the GP told him it was muscle strain, pain continued so went back, had chest xray first all clear, then back xray all clear then echocardiogram all clear, the middle of December he started to feel that his food was getting stuck and then couldn't keep hard food down, the weight literally dropped of him, doctor sent him for urgent endoscopy tumour in the middle of oesophagus found 29th December. He had a CT scan which showed lesions in the liver, had a MRI scan was then told they were cysts and nothing to worry about, went for PET scan which showed hot spot in liver again, scans reviewed and showed small spread to the liver missed on MRI scan.

    So was told last week no surgery just chemotherapy, awaiting oncology appointment for treatment plan.

    It has been a roller coaster of emotions.

    He has cut his hours down at work due to the back pain but he is taking more morphine for that now which is helping.

    We just await what chemo will bring now.

    How have you found chemo?

    We are staying strong and positive and being on the forum has helped me immensely so many positive stories.

    Good luck to us all.

    We can all get through this.

    Angie x

  • Hi Wigston

    How are you doing? Read your post from last year, that must of been a shock to get the change in diagnosis. The chemo can do great things so I hope it works well for you and yes you never know it may give an option to operate.

    I had 4 rounds of FLOT chemo then an op on Jan 5th to remove my stomach as the tumour had attached itself to outer lining.

    I feel fortunate in that the surgeon said it went well and they got all the cancer out.

    I still need more chemo though, I start March 18th, 4 more rounds

    I hope your chemo goes ok and wish you all the best