Going through oesophageal cancer in Spain

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I am joining the forum as a fellow oesophageal cancer patient living in Spain. Diagnosed last October 2023 and classed as T2N1M0 (the N1 representing a "suspicious" lymph node very close to the tumour). Been through 4 rounds of FLOT and am now 1 month post surgery (minimally invasive Ivor Lewis). The FLOT was tough but at least I recovered quickly from it. The slowness of the post surgical recovery is really bugging me and am struggling to deal with in mentally. Every day feels like groundhog day: weight not going up, eating uncomfortable, energy levels very low. The hospital treatment in Spain has been excellent but the follow up at home is non existent. At no point have I seen a dietician or had any advice on eating beyond the "little and often" line. I don´t know how this compares to the UK. Would appreciate any feedback from others about dealing with these early post surgery months.

  • Hola. Siento que estés pasando por esto. Yo soy de Sevilla y estoy en estadio iv. Las cosas no pintan nada bien y quería sabes donde te has tratado.

    Mucho animo

  • Hi there. I think what you are experiencing is very much the norm. I was a bit older than you (63) when I had the operation last year (3 way surgical Oesophagotomy) and recovery was slow but I did manage to walk everyday and expand my eating gradually, I was very much encouraged to eat squashable foods for a good few weeks, little and often. I slept so much in the early days. Take it easy and see each day as a positive. Good luck in your recovery. Best wishes, Julie

  • Hola 

    I'm going to Málaga on Sunday, I love Spain so much! I know just being there will lift my spirits! Good luck with your journey to recovery 

  • Hola. Lamento saber que usted también está sufriendo por esto. Estoy en Asturias y estoy siendo atendido en Oviedo en el HUCA. El trato hospitalario es bueno pero encuentro que faltan algunas cosas, como consejos sobre alimentación, y también encuentro que los médicos no son muy abiertos cuando hago preguntas. Mi experiencia en Inglaterra en el pasado fue un poco mejor a este respecto.

    ¿En qué etapa del tratamiento se encuentra?

  • Hello Julie

    thanks for your response.

    When you say recover was slow, could you explain a bit more? I feel lucky that 6 weeks post op i have had no complications but my energy levels remain very low and i feel i am just ticking over at a minimum level without improving. How long did it take you to get back into normal energy and activity levels?

    all the best 

    Patrick

  • I was only diagnosed on the 22nd of March, had all my tests done since that time. I'm expecting to start my chemotherapy when I return from Málaga.

  • Hi Patrick. Looking back and checking with my husband, from the first day home after 10 days in hospital, I walked around 3000 steps a day but days would vary, and I was pretty knackered afterwards. I didn’t do anything much regarding household chores, and really just slept and relaxed. Christmas was 2 months after my operation and I helped a bit with childcare but remember it was quite tiring and picking my Granddaughter up was hard work. It’s  so hard to say when fitness felt much better; it was just a gradual improvement. Mid February I went back to my keepfit class which I’d done religiously before my diagnosis. My mood was pretty positive and I always felt better after a sleep. When I went for my check up March, my team thought my recovery was sound especially as I’d had only one bad dumping episode and I was eating well. Hope this helps. Best wishes, Julie

  • Hi there,

    like yourself I was diagnosed in October 2023 and commenced my FLOT on 13th December. I had my operation on 29th February so I am 8 weeks post-op today. Like yourself and others, I get very frustrated at the pace of my recovery. Everything I try to do just exhausts me. Had a shower this morning and needed to go for a lie down afterwards. I try to get myself out for a short walk a couple of times a day. My walking pace is so slow compared to what it used to be! Other than that, I spend a lot of my days lying about and having the odd snooze. I receive 750kcal  per night via JEJ feeding tube and also take a daily Fortisip to get some calories in and then try to eat some small amounts during the day too. I certainly wouldn’t call them “meals” as they might be no more than half a yoghurt or a slice of melon but one of the specialist nurses told us that even half a biscuit counts as a “meal” as it’s more about training your body up again. I know exactly what you mean about Groundhog Day. Some days I feel that I haven’t made any progress at all since my surgery but my wife reassures me that I have. I have become so dependent on her for so much and I can’t imagine having to go through this on your own. I know that recovery will come eventually but it is just so damn slow. I’m also dreading the start of my post-op chemo, which is becoming worryingly imminent, as I can’t imagine having to add the side effects of that to everything else I’m dealing with. I think we just have to accept that this is a long road we’re on and try to keep putting one foot in front of the other…

  • Hi Cool Blue 

    It is indeed a tough long road ..This may sound controversial and it’s by no means an attempt to sway anyone’s opinion or decision regarding accepting adjuvant Chemo or not  .That is an individual decision alone and involves a discussion with the  oncologist as each case is different .

    We had an in-depth discussion with my husbands’s Oncologist regarding the benefits of adjuvant chemo , as my husband was reluctant to go through it all again so soon after surgery .His Oncologist told us that he and some of his colleagues  didn’t  regard the third stage of treatment ( adjuvant chemo ) as important as the first two ( pre surgery Chemo and surgery ) if the first two stages have gone well in treating the cancer (clear resection margins and no lymph node involvement) ..He said they had no actual way of knowing if adjuvant chemo actually made a difference and the only way to know for sure if the whole process had been successful is obviously if there’s no recurrence …It’s a ‘belt and braces ‘ approach which is offered as part of the treatment pathway for OC .

    I have seen posts from one member of this group who didn’t have any adjuvant chemo and is still cancer free seven years later ..At the same time I have read posts on there from group members who have completed the process including the adjuvant chemo and have sadly had a recurrence.

    Food for thought indeed ! 

    After much consideration my husband completed two adjuvant chemo cycles and was happy to call it quits when he became ill with a lung infection during the second cycle  .He and his oncologist were more concerned about his long term recovery at that time ...He has no regrets and now 16 months after the fact we are very thankful that everything is looking positive for him up to now …Realistically none of us know how things are going to work out ..we can only put our faith in the treatment process and hope for the best .

    At the end of the day it’s your body and your decision ..

    Wishing you a successful ongoing recovery and Good luck in whatever you decide .

    Regards J 

  • Hi JPM,

    Thankyou very much for your reply. That is very definitely food for thought before my oncology meeting on Monday. Obviously I want to feel that I have done everything possible to prevent a recurrence but I will see what the oncologist has to say. The pathology following my surgery was very positive with no cancer cells found in either the tumour or surrounding lymph nodes. Hopefully this’ll make a difference when contemplating the next stage….