Very anxious about the future

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Hello. It is not I who has cancer but my husband. He was diagnosed with incidental early stage oesophageal cancer at the beginning of the year. He had and has none of the symptoms associated with OC. It was discovered by chance and is a complete shock. He has had slow growing Non Hodgkin's Lymphoma for many years and had a PET scan towards the end of last year to check that cancer's progress. TheConfused scan showed something unusual in his upper oesophagus and he had a gastroscopy with biopsies taken and a CT scan in December. These tests indicated that he had high grade dysplasia and this was the probable diagnosis conveyed to us when we met with the upper GI surgeon and the specialist nurse in early January. Last week my husband had another gastroscopy and more biopsies taken; he also had an endoscopic ultrasound. When we received the written reports from these procedures immediately afterwards we were shocked to read that the cancer is already T2. We are now hoping that the biopsies have been analysedConfused and wondering when we might hear from the nurse, surgeons and/or oncologists re next steps. I am of course glad that the King received very prompt diagnosis and treatment within days but wish that this was the case for my husband. ConfusedThe waiting is hard and I'm feeling very anxious at the beginning of my husband's OC journey particularly in view of the fact that he has T cell lymphoma as well. I thought I would join this forum and hopefully 'meet' others in this position and further along.

Regards

Artemis 

(I had to choose a screen name and it seemed appropriate)

  • Hi Steve. I was diagnosed May last year and after Chemotherapy and Radiotherapy and the operation I am now much more able to talk about things. I completely understand your desire to keep things very quiet. I only told immediate close family and a couple of close friends, whom I absolutely trusted not to tell anyone. It is only now that I can talk more freely, but mostly on this forum. Everyone is different but for me it gave me a feeling of being a bit more in control. I also researched only the positives and that gave me inspiration too. You are so fluent and personal in your account, that you are already building connections with like minded people. Sending you, your wife and your daughter my very best wishes. Julie

  • Hi Steve,

    My husband had his endoscopy on the 29th December, which showed a tumour in the middle of the oesophagus, he then had a CT scan which showed lesions on the liver so then had to have a MRI scan which showed cysts on the liver and were told they are nothing to worry about, then had a PET scan which showed hot spot in the liver again and not sure what it is, they are relooking at all scans, now awaiting laparoscopy, we have been waiting 6 weeks with uncertainty and no sign of start of treatment, what a roller coaster  this journey is.

    I am like you and Sue if we were all like the King, treatment would have started by now. 

    All we can do is stay positive and pray for the best.

    Angie

  • Hi Sergio

    It's been 6 weeks since my op and I'm doing ok. Hardly any pain just a few issues eating and drinking but they said it would be like that.

    As I'm in line for more chemo today is to discuss how much and when it will start. Still have a way to go but getting there.

    All I will say is be as fit as you can for your op as it really helps with recovery

    Best wishes

    Dean

  • Thank you Dean for your encouraging words and for sharing details of your treatment (I had to Google FLOT). It looks as though this is the standard cocktail of drugs. I hope you are recovering from your operation, I understand it's a biggie, and your meeting with the consultant goes well. I shall be thinking of you today and hope that the proposed post op chemo regime is not too arduous.

    Best wishes

    Sue

    (Artemis)

  • Hi Sue

    The radical chemoradiation treatment was hard but I was very weak when I started. My advice would be to try to be as fit as possible before treatment starts. And remember that we all cope differently. 

    Best wishes

    Amanda 

  • Thank you for your wise words. I think he will talk to me about his feelings and future plans once we know for sure the stage and severity of the cancer and a proposed treatment plan. Until then he won't speculate. I hope and believe that this time next week the MDT will have met and we will start receiving information.

    We have told very few friends and family about the diagnosis. Partly because our daughter, SiL and granddaughter went on holiday the day my husband had the second gastroscopy and ultrasound so they are unaware that that is likely to be considerably more serious than Stage 0 high grade dysplasia.

    I'm glad you have a supportive GP. I think I might suggest to my husband that we talk to ours in due course.

    Best wishes

    Sue

  • Hello Angie

    It seems that we are forming a little group of people (and partners) who had initial tests in December and are still waiting for definitive diagnosis and treatment.

    Very best wishes to you and your husband for the coming months.

    Sue

  • Hi Sue,

    Unfortunately yes we are all in the same boat at the moment.

    This forum is excellent for information and I have already talked to some lovely people about the stresses and strains of this horrible disease.

    You will make many friends on here

    Best wishes

    Angie

  • Thank you for the advice Amanda. I understand the importance of being fit enough to undertake treatment and will encourage my husband to make a few changes and get more exercise to prepare. His general fitness is reasonable for his age (66) but he/we can do better.

    What we can't change however are his other conditions primarily a form of Non Hodgkin's Lymphoma called Mycosis Fungoides. It is slow growing (he has had it for over 20 years) and unlikely to prove fatal in itself but it has moved on a bit recently, although still confined to the skin. The new chemo he has been prescribed for the lymphoma affects his cholesterol and liver function which requires more medication. His immune system is a bit compromised so he does tend to pick up any passing lurgies but as I said generally fit.

    I imagine the two departments (Gastrointestinal and Lymphology) will need a discussion but this OC is by far the more serious and urgent.

    Best wishes

    Sue 

  • Hi Sue

    Yes it was a big operation but I seem to be recovering well, it's only been 6 weeks. Having good fitness going into op is very beneficial. I had a breathing device to strengthen lungs that physio sent out. Also done a lot of cycling/walking too. If you can manage any exercise it does help a lot.

    Not sure what oncologist consultant is going to advise but expecting 4 more rounds of FLOT.

    I hope your husband gets a treatment plan in place soon and that it goes well

    Best wishes

    Dean