NET Bowel Cancer

As a 49 year old man i have known for a while something was "wrong" and i had to go to quite unacceptable lengths to get my GP to give me a scan (I've suffered IBS for 20+ years) as i was also suffering bladder issues. I was phoned by my GP on the 23rd Nov 18 and told over the phone "they've found something, it's cancer". My life stopped,I've told friends and family but it doesn't seem real. I've had a top to toe MRI and 24hr urine sample taken and the secretary would not give me any results over the phone. I have a strong cancer link in my family,any others feel hard done by their GP?

 

UPDATE APRIL 19

 

I did have a full blown NET in my bowel and have in the last 3 days had a right hemi collectomy to remove it. I have been in hospital the day before to have an occretide infusion set up to attack the possibility that I also have carcinoid syndrome. I am sat in hospital feeling a little uncomfortable, bit bloated and generally tired but I am scheduled to go home tomorrow.  I WILL defeat this bloody condition, it is a very rare cancer in its make up BUT as per usual the NHS have saved my ***, my future and my prognosis is very good. I have met some incredibly brave cancer patients over the last few days who have knocked my issues into a cocked hat but they've all said "WE ARE FAMILY, A CANCER FAMILY AND WE STAND TOGETHER" 

 

Good luck toall of you with your respective battles.  LOVE AND LIGHT TO AID YOUR FIGHT

  • Hi Robin,

    I saw your post hadn't been replied to and hope you weren't feeling alone.  Thought I'd share my GP experience with you.

    About this time 3 years ago I caught what i thought was a nasty cold.  It lingered and lingered as did my cough.  I went back to the doctor time and time again because I could feel something in my chest.  I asked every time for an x ray only to be told it's just a viral cough.  Its a virus etc etc.  Eventually, after god knows how many courses of antibiotics and 3 months later, I had a telephone appointment with my GP as i was still coughing.  I said to him, all the adverts say if you've had a cough 3 weeks or more go to the doctors.  Ive gone to my doctor and you have done nothing.  His reply was a heavy sigh and said, 'as you've been consulting Dr Google, I suppose I had better send you for an x ray.  A day later I had it done.  Two days after, I  was in my surgery trying to get my son an appointment.  I said his name and the receptionist kept repeating my surname as though it rang a bell.  She said, 'Are you Paul?  You need to see a doctor urgently.' I asked why and she would not tell me.  Didnt even offer to get a doctor or practice nurse to sit me down and explain.  I had to wait a couple more hours to get a doctor phone me. Eventually found out I had a 3cm Typical Carcinoid in my right lung.  I was angry and felt let down.  Thankfully, it was completely removed and will hopefully stay that way.

    I know what you mean about not seeming real.  Even though I could feel something in my chest I couldn't believe it was a tumour.  Not for one minute.  All in that moment I had lost my essence.  My feeling of invincibility.  Like I could take on the world.  All gone.  

    As far as I can gather, its normal receptionists won't tell you results good or bad.  They're not trained for it and the subsequent barrage of questions we all quite understandably have.

    My thoughts are with you during this incredibly frightening  and confusing time.

    Best wishes

    Paul