My first post

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Hello everyone. My name is Mike and I was diagnosed with Oesophageal Cancer on Jan 30th. It came as an utter shock as I am an extremely fit 61 year old and was often in the gym 5 days a week.

I have a large tumour in my lower Oesophagus and upper stomach. Since Jan I have been going through numerous tests. One of those has picked up a possible problem in my hip so I had a bone biopsy last week. If the cancer has spread according to my consultant the prognosis isnt so good.

If it hasnt spread the plan is for me to start 8 weeks of chemo in a couple of weeks followed by a break and then an operation with more chemo to follow. However I am getting so frustrated with the continual delays which mean I have still not started any treatment 2 1/2 months after diagnosis. The consultant has already said how aggressive this cancer is and I just want to get onto the treatment stage to give myself a chance of getting through this.

So I decided to join this group and see if other have any advice for me. I have already read some of your posts and I dont underestimate how difficult this is all going to get and some of the posts have made me feel quite scared. Did anyone else experience a delay before they started treatment and if so were there any consequences?

I have also found talking to friends and family helpful (and my family have been wonderful) but its hard to express to them how you feel with this awful thing growing inside of you. I regulalry wake up at 3am in a lot of pain and with horrible thoughts going through my mind. I want to learn from your experiences 

Thanks Everyone

Mike 

  • Hi Mike .

    I’m in a similar position to you ( ie quite young , 56 and very fit and healthy). Don’t fit the profile etc . I’m going through the private sector and it’s still taken six weeks to start treatment . It takes time to gather all the right information I know . Sometimes one scan can then trigger more information gathering .The treatment has to be right for your individual situation . 

    The term aggressive also means resistant to treatment so try not to focus on the speed of growth issue . I was diagnosed with locally advanced eosophageal cancer six weeks ago and by the start of treatment there has been no further spread 

  • Thanks MarshEd that is really reassuring. I started in the private sector but my insurer AXA/PPP refused cover once they found out I had cancer. Its a long story but I have had three consultants and my GP write to them saying their decision is wrong but they wont budge so I have gone to the financial ombudsman now. Since I switched to NHS everything slowed down dramatically. Everyone is so nice but the system seems a bit out of control!

    Good luck with your treatment and thanks for your message it really helps

  • Hi Mike,

    I was very interested to see your note on being bumped off your Private Healthcare.  I am fighting Vitality with the same issue. My husband got food stuck in his oesophagus last November and because he had a bout of acid reflux years ago when he ate a curry, and not covered in our plan, they said they would not cover him.  As you say, despite a letter from the GP and the gastro specialist saying its NOT reflux related as its so high up in his throat, they now want yet another form signed by a specialist (which Ive been waiting for for 2 months despite chasing them twice weekly) to say his Squamous tumor is not reflux related!  The thing is, how does anyone know what causes cancer. Hes never smoked and is a light drinker and never taken any recreational drugs in his life.  Who knows what causes these things but they latch on to these things so they dont have to pay out and keep you hanging on for months.  It shameful.  Would be interested to hear your story, but dont give up.  It is a long wait to get your plan in place with the NHS as they are so stretched, plus we've had consultants go on vacation, Easter Holidays in the mix etc.. We are still waiting but due to start his chemo mid April. Fingers crossed for us both.

  • That’s horrendous that you are having to deal with the stress of that on top of everything . Ironically I’m with the same insurers but have a long standing policy . Having said that there have been some bumps with them along the way and I’ve had to be fairly robust in my dealings . I’m a lawyer which sometimes helps as companies can be a little more careful ( although not my area of law ) .it might be worth you having a lawyer look at it from a contractual perspective as well as the ombudsman to speed things up . I appreciate it’s all time and hassle . Being treated privately has been a life saver ( almost literally ) as I had very bad reaction to first chemo but was able to be admitted immediately to local private hospital to be out on a drip 

  • Hi Mike. Sorry to read your post and completely understand your anxiety in wanting to get things moving. When I was diagnosed last year in May, the first thing we did was to ask about Private Healthcare, which we’ve had for years, but the NHS took over and were absolutely brilliant (I live in West Suffolk so the Chemotherapy was carried out there but the Radiotherapy and the Surgery was carried out at Addenbrookes, Cambridge). By tapping on my name you should get to my blog that sets out my time scale but also goes into detail about treatment, and from this perspective, whilst treatment/appointments/scans etc do take over your life for a while, I found that nothing was as bad as I’d feared. I also didn’t fit the profile (female, fit and healthy??, 63 years old). This forum, and the Oesophageal Patient Website will be useful for you and your family. Sending you my best wishes and hope things start moving for you very soon. Julie

  • Hi Sopranos

    The issue for me is that the policy with AXA was relatively new having switched from BUPA last year. AXA had a look in my medical records and found a reference from a respiratory consultant I was seeing in May 23 where he had documented that I occasionally suffered from indigestion after a spicy meal. AXA have taken that to mean that I had Oesophageal Reflux which they claim is a pre cancer condition and therefore my condition was pre existing the policy.

    Of course they are completely wrong. 3 of my consultants have written to them pointing out that having reflux does not mean you go on to get cancer and that millions of people in the UK suffer from indigestion and dont get cancer. Nonetheless AXA have stuck to their decision so I have taken my case to the financial ombudsman. I was going to try engaging a lawyer but that is such an expensive route and as I have now had to stop working we cant afford the legal fees.

    After I switched to the NHS unfortunately things have slowed dramatically. I am waiting on a bone biopsy right now which will determine the way forward and hopefully like you I will start chemo in a few weeks.

    Good luck to you. The point I would make is it just isnt correct that Oesophageal Reflux is a pre cancer condition. It is if you go on to get Barratts but there is no evidence that I did and my CT scan from last year was clear. In your case especially as the tumour is in the upper Oesophagus I cant understand the insurance companies position at all!!

    Mike

  • Hi thanks for your teply

  • Thanks for your reply. Sounds identical to our issues re private health care! Wonder how many others have had a similar experience on here. They just rely on people giving up.  As you say the NHS are good but very slow snd in the case of oesophageal cancer, timing is everything.  Keep in touch and let us know how it goes. Fingers crossed for you Thumbsup

  • Hi Mike

    I'm sorry to hear your story. My tumour was in the lower esophagus where my stomach meets.  I had 4 rounds of chemo and then scanned. Unfortunately my tumour had spread and I was inoperable. That was 2 years ago. I started immunotherapy almost 2 years ago and my disease is totally gone. I have 2 more immunotherapy treatments left.  They will continue to scam me every 12 weeks. If there’s is any evidence of disease returning they have another immunotherapy for me. 
    Never give up and keep the faith miracles happen. 
    Good luck Hilary 

  • Hi Hilary,

    So good to hear you have responded so well to treatment. My husband tested negative for immunotherapy so he is only having chemo at the moment, I so hope he can get on a trial for something else.

    We will never give up and hope for a miracle Pray 

    Take care

    Angie