Newly diagnosed gullet cancer

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Hi I'm a 57 year old lady who saw my gp with swallowing problems. The NHS were great and I have had lots of tests, really quickly, culminating in a upper endoscopy on 11th August. I was told it was gullet cancer and 2 lymph nodes were involved and that there was a mass that 6 biopsies were taken from. I had this procedure last year, for the same problem, but nothing was found?!

Now it's a waiting game for up to a couple of weeks to determine what stage it is and what the treatment will be. 
When I first saw the ENT specialist he said that everything looked fine and reassured me that only 2% of patients get throat cancer so I should be fine. BA HUMBUG to that! 

Im in a wheelchair with lots of health issues the main being Fibromyalgia and M.E. And was advised to get fit as possible? Extremely challenging to say the least. I have spoken to the head nurse on the GI team and she said she/they will help. 

My Mum is 79 and has Alzheimer's and I am the only family member helping her because the rest of my sibling said I was at home all day so I should do it! As you can guess my life is very challenging already so this is an awful lot to get my head around and is frightening. I'm far too young to die plus my Mum needs me. My siblings will just have her put in a home and I have fought tooth and nail to stop that for the last five years.

Now comes the long wait which seems forever. Two weeks seems like months. I just want to start my treatment and get on with it..

sorry for the long post

Pompeygirl

  • Hi there!

    I am so sorry to hear about what you are going through at the moment but the waiting game is the most difficult part of the whole process. Persevere and keep busy - we all eventually get through the process. 

    I would wait a week and call up to see if the results were in early just in case.

    The fact that you have mum to worry about will give you inner strength to fight this and you will succeed.  When I was diagnosed; I wanted to survive so that I could be around my daughters weddings and to pick their outfits etc. That thought brought about an inner strength to me to fight fight and fight for survival.  

    Hang in there. Sending you virtual hugs at this difficult time.

    Be positive. Take care.

    Rf2k18 

  • Hi Pompeygirl

    I may be a bit early, but wondered if you had heard any results as of yet, I know the waiting can be quite stressful. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
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  • Hi

    I have had some results and have seen the surgeon, anesthetist and am seeing the Oncologist on Tuesday 30th August. Not all of the results are back. They know its cancer but not which sort. It looks like i will need Chemo then an all day surgery to rebuild my gullet, pulling my stomach up into my chest, and something about my bowel and removing some lymph nodes. I was told the surgery was serious and would last 7 or 8 hours but would need a laparoscopy first to make sure that they could do what they needed to.

    I’m waiting to attend a course about getting fit for surgery, which i asked about because i am in a wheelchair and am still waiting to hear about the staging. The Anesthetist also suggested about testing my fitness by taking part in a static bicycle test. He explained what it entailed and asked if i wanted to try it. This will enable him to judge how well my body copes with such major surgery. I’m not sure how well i will or will not cope so thought best to try. But this wont be until after Chemo and after a 5 week rest period.

    The anesthetist said today that it was caught early and what with my age we had those two factors on our side so at least there are some positives. It looks like about a year of treatment so a long road ahead…..

  • I can sympathise,  I was diagnosed in June. The waiting around is horrible.  I start chemo and radio in November.  Won't get op properly till new year x

  • Hi 

    Sorry that you find yourself on this journey. I'm also relatively newly diagnosed.  The staging is thorough with CT scan, PET scan,  endoscopic ultrasound plus the laproscopy. I've just started chemo. I've found that there is s lot of support out there.  If you're near Guildford theres the Fountsin Centre and there are also the Maggie Centres. Of course Macmillan have professionals who can help including with financial matters  I've recently joined a 'prehab' programme which is about getting ready for surgery plus they have an OT that can help with things like sleeping especially after surgery. There is also a nutritionist. It's a lot to take in so all I can say is one step at a time.

    Take care