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)

  • I apologise for the odd emojis, don't know where they came from!

    Artemis 

  • Hi Artemis, sorry you have to come to the forum, unfortunately the waiting is one of the hardest parts of the Cancer journey I think and in some ways it doesn’t improve even after like me are in remission from 2 cancers as he will have follow on scans etc after the full treatment. I had T3 stage in mid Oesophagus 2 years ago they found it just 12 months after my Laryngectomy (voicebox cancer) on one of my scans

    Hopefully the treatment won’t involve operations and like me it will be Chemo/radiotherapy, it is tyring and takes it out of you but I actually managed to continue working upto the last 3 RT sessions and then I was flat out for 2 weeks .

    I hope you both get the results soon and a plan is put in place, mine was 6 chemo sessions and 35 sessions of RT.

    Take care and come back for further support if you need it and please don’t Dr Google, our support pages have information and also Cancer Research have good info

    Tony

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  • Thank you for responding Mike and for sharing some of your own history.We have heard from the specialist nurse but nothing is happening yet. The results from the recent tests were expected in time for the Multi Discipline Team to discuss my husband's case at their meeting yesterday but unfortunately they weren't available in time. These results are being chased up so the hope is that the case will be on the agenda for discussion at next Monday's MDT meeting and we will have an appointment soon thereafter. We are anxious to have a clearer understanding of the stage and severity of the cancer and proposed treatment.

    I have noticed that many contributors to these forums use their first names in conversations rather than screen names so mine is Sue. Artemis does sound a bit pretentious on reflection and I am very far from a goddess!

    Best wishes

    Sue 

  • Hi Sue

    I like your screen name. My screen name is Crochetherapy because, as you might have guessed, crochet has been my therapy during my cancer journey.

    I was diagnosed in March 2021, age 53. Squamous cell carcinoma, T2N0M0 mid oesophagus, 6cm. It had blocked my oesophagus completely so I was in hospital for a couple of weeks as couldn't swallow anything, and they fitted a stomach feeding tube and I syringed Fortisip, water and medication through that. I was very weak when I left hospital - I'd lost weight and had no sleep so wasn't in the best physical state when I started my treatment. I am on the SCOPE2 trial, I had radical chemoradation - 4 rounds of cisplatin, 12 weeks of capecetabine tablets and 25 radiotherapy which started on the same day as my 2nd round of cisplatin. No operation. I lost weight and was very weak, I couldn't get out of bed some days. We are all different and all cope differently throughout treatment. Though I think we all feel the same way about the waiting, that is awful. I've just had my 2 1/2 year all clear which I'm very happy about, but the thought of it returning never leaves my mind.

    I hope that you hear something soon. 

    Best wishes,

    Amanda

  • Hello Sue,

     I’m (almost) in the same position as your husband, although I didn’t have any previous conditions.I had an gastroscopy on December 20th last year (after visiting A&E a week or so earlier with something ‘stuck’ in my oesophagus).

    A couple of biopsies were taken and I was told that it looked like high grade dysplasia but that it was curable and that I was likely to receive some kind of treatment within 3 weeks.

    I have since had an ultrasound endoscopy and a PET scan. Unfortunately the the PET scan highlighted that lymph nodes on my Aorta and Renal Artery were involved so my Consultant told me that the situation was now out of the scope of an operation and that I needed to see an Oncologist to see how to progress with treatment.

    I had another gastroscopy the following day (last week) and seven biopsies. I was told that the Oncologist would need the biopsy results to specify treatment. So it’s over 6 weeks without treatment. The Doctor who did the last gastroscopy wrote that he thought that the Tumour had enlarged.

    So from feeling pretty positive I have had a couple of very negative days. I know it’s not the case, but because I cannot have the operation, I feel as though I have been dropped down the queue. This is paranoia and panic! I haven’t even been told  the TNM grade.

    On the whole though I am still positive and will fight all the way, writing this has helped me but I’m not sure that it has helped you? The waiting to find out and get moving is pretty difficult and unsettling. Things seem to get worse when one dwells upon the unknown. I’m trying to focus on the future and the good things I’ve got to look forward too. I’m not the ‘pushy’ type of person but does being that way help or hinder?

     I’m 100% with you regarding the King, that did make me smile. It reminded me of my chauffeur driven limo’ trying to park up the last time I went to the hospital for an appointment Wink 

    Keep positive,

    Steve.

  • Thank you for responding Amanda. Your treatment sounds gruelling and makes me feel apprehensive for my husband. However, the fact you did not have an operation and you are now 2 and a half years clear is cause for celebration and optimism. Thank you so much for sharing your experience it really does help to know what we might expect. The recent (last week) ultrasound/gastroscopy indicated that my husband's No smokingcancer is T2 but we do not yet know the biopsy results and have not had the meeting with the MDT so don't have any more information or a treatment plan but it is encouraging to know that an operation may not be necessary.

    Best wishes

    Sue

  • Thank you Steve your post has helped tremendously. It's good to hear from someone who is also at this stage. 

    It does sound as though your early OC journey and my husband's are similar so far as the tests and waiting for results are concerned. I know it has only been a few weeks since the initial diagnosis but I can't help feeling that with this particular cancer weeks, or even days, make a difference and like you my husband and I are finding the waiting unsettling.

    May I ask, do you have a wife, husband, significant other? How are they coping? I am finding it very difficult and reluctant to burden my husband with how scared and sad I am a lot of the time because it is after all he who has the cancer and he's not saying much yet. It is one of the reasons I joined this forum. I don't know if he will in the future, at present he doesn't want to.

    I will look out for future posts from you and really hope that things start happening soon and you have a positive outcome.

    Best wishes

    Sue 

  • Hi Artemis

    It is very difficult waiting for results. I was diagnosed with OC cancer in June, which was found by chance too. I felt ill after a bike ride up a mountain in Lanzarote. Saw doctor on my return who sent me for an endoscopy which is when they found the tumour. Mine was T3 N1 M0.

    I have to say that the whole process from diagnosis to treatment was fairly quick.

    I had 4 rounds of FLOT Sept/Oct then an op on Jan 5th. I see my consultant tomorrow to see how much chemo I need post op.

    They do have time frames to work to and you will find that once the diagnosis is confirmed they will start treatment as soon as possible. It is hard not to worry I know myself and my wife were the same. I'm sure they will be in touch soon.

    I wish your husband all the best and if you need to talk I'm on here quite a lot.

    Best wishes

    Dean

  • Hi Dean

    If you are seeing your consultant tomorrow - does that mean the your have recovered quickly after your operation. I am due to have an op in 3 weeks - and wondered what recover was like for you…

    Would be interested in knowing how you are feeling right now?

    Sergio

  • Hi Sue,

    At first my wife was scared and panicked by the situation and found it all very overwhelming. However, our daughter had done some positive research which she shared with my wife, that helped her come to terms a little.

    We were probably both in shock and found everything difficult to deal with.

    Men in general I think, find it difficult to talk and bottle up their feelings. At first I certainly put everything in a ‘box’ in my mind and closed the lid. I’ve got lots to occupy my mind during the day and in the most part have slept quite well, but it was/is the first thing on my mind when I wake up and takes some shaking off.

    I know things are just as bad for my wife. Like you she is living this too. She’s frightened for the future and so am I.

    BUT we have now spoken about the situation and we are helping each other.

    I was very upset the other day and shared my fears. My wife helped me and just her talking and sharing put my mind at ease. She suggested that I go to see my GP. I went today.

    The first thing I said to the GP was (sic) ‘I have been hiding from this a bit but I need to be more proactive. I’ve never been a boxer but if I can use a boxing metaphor, I’m going to fight this, but I need people in my corner, my wife is, will you be?’

    My GP was fantastic, she listened to all of the prepared questions that myself and my wife fired at her and gave some good advice for now and the future. But most of all she made me feel that she would be there with me and for me. We BOTH felt much better afterwards.

    I don’t know about your husband but at the moment I don’t want many people to know. I’ve only told two of my best friends and sworn them to secrecy for the time being. I don’t want anyone to ‘pity’ me or more importantly treat me any differently. More people will have to know in time, but at the moment that’s all I want.

    My wife’s friend is undergoing treatment and has been diagnosed since the summer. She has let everyone know and people have been great to her. I’m sure this is the way but not for me, just yet!

    You and your husband need to talk to each other I think. It may be difficult but you will both feel better I’m sure. I think you both need to ‘build the team’ around yourselves, a team in your corner. The main player is you husband, but you’re his number 1 coach.

    Your husband will know how worried you are. Try and have a little chat to start with. You need to support each other and be POSITIVE.

    You can both do it.

    I’m sorry if I’ve rambled here but I hope I have helped a little. 

    Best wishes,

    Steve