Scanxiety

Hi New to all this. Diagnosed with suspected tumor after endoscopy 19 March This was confirmed after a CT scan on 1st April.Since then I have had a PET Scan on 13 April and a second Endoscopy on 27th April I spoke to a doctor on 11th April but still have not seen a consultant or been informed of any treatment plan I am really struggling with stress and anxiety about the future I was told at the last endoscopy that I have a 6cm tumor at 30cms which sounds large to me. All I read is that early diagnosis and treatment is paramount but it is now 7 weeks since my first diagnosis. My sister in law, a breast cancer sufferer, coined the phrase Scanxiety. I am really suffering from that!

  • Hi Steve

    i totally understand how hard the first part of this is. After an endoscopy they confirmed that it was cancer but waiting for scans etc was difficult. Eventually though they called me in and once I had a plan I did feel better. I have had 2 round of chemo and then more scans to come. You will have a whole team looking after you and once the treatment started I had lots of support from the cancer hospital. There’s a 24/7 helpline and I also have a number for a nurse at another hospital who has been very helpful. You don’t say how well you are eating? This my main problem but it’s definitely getting easier with the treatment. You need to let your family and friends support you and be honest with them about the way you feel. I was reluctant to open up at first, particularly to my daughters who are 27 and 31. I actually think they find it easier if I am straight with them and they have really supported me through some dark times. Try to stay positive-the treatments for cancer have moved on a lot. Sending you every good wish. 

  • Thanks Nan It's what people keep telling me but like you say it's not till you start any treatment you can actually feel better.I do consider myself lucky I can eat normally, if a little carefully as my tumor is growing lengthways rather than outwards I do worry as its against the lining of my right lung so could be spreading I know I just have to wait but I find it difficult. Hope all stays positive with you

  • Update Finally got an appointment to see a clinical oncologists yesterday who informed me that because they deemed my case to be inoperable and also not suitable for radiation treatment - I have 1 remote lymph node that is affected - I am to be given palliative chemo and if tests confirm suitability immunotherapy All a big shock as I had not previously spoken to a surgeon The oncologists suggested off the record to get a second opinion and even gave me a name.This has all left me very confused

  • I do understand the confusion. I have been in hospital with a lung infection and was told so many different things. I can’t have the op either now but not sure what they are going to do next. It is a shock knowing that I can’t be cured but the hospital have offered me lots of support and my family is amazing. I hope things become clearer for you soon. The main thing is to take care of yourself and try to eat well. Sending best wishes. 

  • Always worth a second opinion Steve, I can recommend Dr Asif Chaudry @ The Royal Marsden - a miracle worker.

  • Sorry to hear Communication is a wonderful thing - when it works I hate not knowing, in fact I think it's worse than being ill Best wishes that they sort out a plan as soon as 

  • Thanks for replying Interesting you mention the Marsden, second time today Will definitely investigate Thanks

  • Update Was given an appointment with one of the MDT surgeons that made the decision about my treatment He was very apologetic about me not being spoken to about the decision but gave me a very convincing explanation of my situation including showing me my scans etc. I am now confident that I understand my case and the reasons for the selected treatment - palliative chemotherapy. Still waiting to see if immunotherapy is possible but have an appointment with oncologist next week to get details of formal plan. I now have complete trust in the team that is managing my case and just have to hope that future treatment holds it all at bay for as long as possible

  • Just taken phone call from oncologist to say tests show I can have immunotherapy I think that may be some good news at last

  • Due to start combination of chemo and immunotherapy on 8th June All seems very real but bizarre to think that be ause a feel well I have to make myself ill to hopefully slow down the cancer