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never been so scared

Lori05
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I had a surveillance colonoscopy  july 3rd ago and afterwards was told a large suspicious lesion had been found, urgent biopsies sent and referred for urgent ct scan of chest abdomen and pelvis. july 15th. almost 5 week wait for results that I had to chase after receiving a call from x ray department to go for another scan relating to womb- I later learned that this was due to an incidental finding on CT but I had to find this our for myself after being so upset and called the consultants secretary and later phoned by a surgical registrar who told me that CT scan didn't show spread  Following week  I was Told biopsies showed HGD but no definitive cancer diagnosis and needed more biopsies as the MDT highly suspected the cancer was deeper into the colon. . Booked in for another colonoscopy but received no bowel prep - had to contact hospital day before and go collect it.

I had colonoscopy on Thursday and was very anxious - I have been a wreck since July 3rd not wanting to leave the house or interact with people.  Towards the end of the procedure the consultant said to me that he had removed larger biopsies from the tumour to identify the type of cancer. As i had my back turned to him and looked around and said  ' So I have cancer' and he replied yes you do and probably aggressive, we just have to see the type. I was floored.

Anytime i have had a colonoscopy the doctor has given me a A4 sheet with all the details of procedure on it and spoke with me. I was taken round to the recovery area and I was upset. the nurse asked if I was ok and asked what I had been told. I said  I have been told i have cancer- she looked at her notes and said. 'That's right'. I asked when doctor was coming to talk to me as i had questions but the nurse informed me he had left for the day. I was numb.

I still have this large lesion and it is ulcerated - probably aggressive and almost 7 weeks since it was found. So i don't know if by this time has  the cancer spread.

yesterday I was so upset I went to my GP who was able to print me off the copy of the report I should have received before i left hospital after colonoscopy on Thursday. Report confirmed cancer of a 25mm ulcerative centrally depressed lesion. At the bottom it said needs consultation by senior surgeon. 

Can anyone tell me is the the normal way of being dealt with. 

  • Offline

    Hi Lori05.  What a horrible experience you have had.  I am not surprised with anything that happens with the NHS anymore.  But I must say you have had a terrible time and to be told so bluntly that you have cancer and then just go home and not explain to you what was happening is awful.  Do you know what the next step is or don't you know yet?  I was told I have secondary cancer over the phone and was just numb, I couldn't believe they would do that.  So no I don't thing that this is the normal way it should be dealt with.  Next time you have an appointment make sure that someone goes with you and don't leave until you have the answers you want.  So maybe make a list of questions you have before you go.  I really wish you luck and please know that you are not alone,  I am always here to chat to.  Please let me know how you get on.  Big hugs.

    Lee x

  • Offline in reply to leelaloo

    Hello Lee, 

    Thank you for replying. I am so sorry that you were also told about secondary cancer.

    I have no idea what the next step is. I was wanting to ask the doctor some questions after the colonoscopy on Thursday but he left the hospital without coming to speak to me. When  my GP was able to print off the report it just said that he spoke to me in the presence of endoscopy staff  ( yes as I had my back turned to him) and the comment were that it was a large ulcerative definitely malignant tumor and needs referring to a senior surgeon.  When he told me that I had cancer he also said probably aggressive. When i had chased up the results from initial biopsies and spoke to a doctor he told me these biopsies would be marked urgent and results would take 7-10 days but I was told with the initial ;urgent' biopsies that they would take 2 weeks maybe 3 and in the end i waited almost 5 weeks,

    I wanted to ask him as he had definitely diagnosed cancer would i still  have to wait on the biopsies? Or would be moved forward quickly for surgery>?

    if i have to wait several more weeks for the results and then MDT that would be around 3mths since lesion had been found.

    When the doctor spoke with me after the initial biopsies 6 weeks earlier he never commented on tumor being ulcerated and did this mean that the cancer had advanced? Could it have spread in the past 6 weeks affecting my prognosis/

    When i had the CT scan with contrast it also showed fluid in womb - had ultrasound for that and womb lining is double the depth it should be so I also have to get a biopsy of that. I wanted to ask him if the two things could be connected as well as the cyst like growth on my liver? 

    I had a panic attack during the CT scan and  I know that other scans have to be done when cancer is found such as MRI and Pet scans but I have really bad claustrophobia and I know I couldn't do them which is adding to my anxiety . I know i am a complete coward. The colorectal nurse mentioned light sedation but the sedation I had for colonoscopy was the maximum and I was fully aware of everything and felt everything so unless I can have sedation that leaves me totally unaware I am lying in a metal tube I wouldn't be able to do them. I also have arthritis and back issues and can't lie on my back for more than a few mins. I also have problems breathing properly when lying on my back because of my size on top. I know I must sound pathetic but colorectal nurse has told me that heavier sedation isn't done at hospital for scans. What happens then? I have been looking at videos of things to help but music wont help me- having someone beside me- won't and even watching the videos I start to panic. 

    I have read so many peoples stories and they still keep positive- I just feel such a coward.

    Sorry for the rant. x

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