Why all this waiting

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Hi guys

The report I got from the hospital after I had yet more biopsies taken says I am NOT a candidate for surgery. However I have had no treatment apart from going for a CT scan and thankfully there was no worrying signs of anything on that, so that is good news. But I have been waiting since the 8th November since I was told I had cancer and it is doing my head in because nothing seems to be happening. Is this common or is it just me? 

  • Hello Scrappydo

    I had an endoscopy and was informed it may be cancer, biopsy results would be discussed once other test were carried out, a week later I had a CT scan then a week after that a PET scan a week after tSparklesat my results, then 2 weeks later I started treatment. Do you have any contact numbers for the nurses or Dept. I would chase them up, if you have Macmillan, we have one based in our hospital and theySparklesare great and can send emails on your behalf. GP also, Hope this helps, Sparkles

  • The speed of my diagnosis to treatment was also identical to Jenjen6's - once endoscopy identified 'likely cancer' I was swept up and scans and treatment started quickly.

    However, I did have to chase up the actual endoscopy as that was supposed to be within 2 weeks and was getting close to that timescale so I called them. I also had to chase biopsy results, and actually ended up finding them at home in my GP record before the hospital got round to telling me!

    I would definitely be very pro-active in chasing up. I'm afraid it seems the louder you shout, the more you're heard. Someone gave me that advice at the beginning and it proved to be true. Mind you, I live on the Isle of Wight and my treatment has been split between the island and Southampton, with neither hospital seeming to be capable of liaising with each other!

    To be waiting since 8 November is unacceptable. I can only imagine how awful you must be feeling. Don't feel bad about chasing them, you need answers.

  • Hi Guys, if you read my profile you will see I was told on the 8th November 23 I had cancer. An EMR resection was done to remove the cancer and now another biopsy, my head is spinning with all this time lapse. I had a CT scan a few weeks ago.  I don't know whether to be worried or to start jumping up and down and the spitting the dummy out the pram. I really am at my wits end with all this waiting.

  • Hi Scrappydo, 

    Have you contacted your local cancer nurse? 

    I have a slight idea of what this must be doing to your mental health, but can't begin to understand how you have managed to contain yourself for the last three month..  waiting for information, treatment if needed, and explanation if not... I can only hope that the reason for their delay is to ensure that if they give you treatment, they give you the right treatment. 

    If you haven't contacted the GP or your local cancer nurse, or spoken with the Macmillan team for some help, can I suggest that you do that on Monday, because knowing something is a lot better than knowing nothing. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Hi Lowedal

    This waiting is really doing my head in. 

    My cancer nurse when I phone is very guarded when I asl questions as to what is going to happen, I suppose she needs to be but I would just love some information. I feel as if all these people are making decisions about me but telling me nothing. It has been a very long 3 months.

    On Wednesday I was told I will have to go back into hospital to have another EMR beecause the last biopsy has shown there is still High Dysplasia at the site of the last EMR. I am wondering if they keep doing this is tis going to be my treatment, that they are just going to go on taking lumps out of me. 

    I am sure I don't want chemo, but would it kill the cancer and I would be better with that and if that is the case, bring it on. I know chemo and radio therapies take a toll on the body but that is physical this is mental and I can't  talk to my children or my partner. My partner is the original My sunshine, so positive it does my head in sometimes, and my kids are so negative. I think they think I am going to pop my clogs so to speak and I have to keep reassuring them. I just feel I have no-one to talk to who has a balanced opinion.

    So sorry for my rant Lowedal I am just not having a good time at the moment. 

  • You shouldn't have to wait this long .I would definitely start chasing this up immediately.

  • Kaya86  

    I have to go for another resection (EMR) in early March so we will see what happens after that.

  • I think it is important that you do rant Scrappydo!

    If nothing else it gives you some release from that pent up emotional experience and that it truly needed to help you get through.

    With the Cancer nurse being very guarded and limited information coming your way, maybe it is time to contact PALS 

    Waiting even longer, regardless of what additional appointment you have coming up, may just add to a negative reaction towards your MDT, and I think maybe they need to know the affect this is having on you. 

    Please feel free to rant whenever, that is part of what we are here for, and I hope that you get the answers that you need real soon. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Hi Scrappydo,

    We're in exactly the same position as you and the nurse is most unhelpful and dismissive! It's been going on since December and my Husband still hasn't seen the Oncologist let alone started treatment!!

    Out of interest which Hospital are you under?

  • Hi Jaxster

    I have got my date for my next ERM for the 14th March so hopefully I will find out then what's what and maybe I will find out what the plan is then. I had a long talk with a lovely nurse on the phone who explained everything to me so I am feeling a bit more settled for now.

    I am at the Glasgow Royal.