Waiting game

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Can I ask what was the length of time from initial diagnosis to start of treatment for you all ?  its only been a few weeks for me but curious on the wait , initially I have gone through NHS which up to now has been pretty quick with biopsies and scans but I have private health care through work its seems a minefield but starting to think about using it 

Thanks Emma 

  • Hi Emma,

    I was diagnosed mid Feb and like you, my initial scans happened quite quickly on the NHS. Then I had a few weeks wait before I heard anything from them but in the meantime had extra tests via our private healthcare. It was actually my private consultant that contacted me with my NHS scan results otherwise I wouldn’t have know anything for weeks.

    I had my NHS consultant appointment and met with the Oncologist mid March, where we discussed treatment plans and was told my next appointment would be to get a CT Planning Scan for the radiotherapy.  That happened at the start of April and my actual treatment started on 22nd April.

    We eventually went with the NHS but there’s nothing stopping you running both NHS and private at the same time until you decide who to go with. Also, because I’d engaged with our private healthcare company but ultimately had treatment with the NHS, the private healthcare actually paid me a daily rate for each treatment day!! Might be worth seeing if your scheme is the same.

    Georgie x

  • Hello Emz1976

    My husband and I have private medical insurance but when I was diagnosed three years ago, I asked (on another forum) what people's opinions were on the difference of treatment.  Someone with lots of experience advised that I looked very closely at the conditions on our private policy and said there can be limits on the treatment and/or drugs and sometimes things can take longer privately because each new treatment has to be approved.  I then discovered on our policy that there was a limit on the drugs, I can't remember if it was six months or a year, and I was outraged, this is a policy we have been paying no small amount into for many years since we had our own very small company.

    So I went with the NHS, and there isn't a single area that I can criticise.  I was diagnosed in March and didn't start treatment until June, but in the intervening period I had MRI and PET scans, two sigmoidoscopies, a biopsy through my back and a further biopsy under GA.  My tumour was submucosal and initial biopsies were inconclusive but they pulled out all the stops and I literally had appointments every single week until they finally could isolate what I had.

    If you have a good cancer hospital or department private care may be unnecessary, so I would investigate that.  Both the cancer hospital that I am under and my local hospital are rated outstanding and I have experienced why.

    Best of luck

    Irene xx

  • Hi  ,

    My journey was a little different so I’m not sure how relevant it will be to your query. I was diagnosed February 2018, I went on to have my diagnostic scans, MDT meeting etc., over the next week & a half then got a call with an appointment to see my colorectal surgeon, my stage 1 tumour was surgically removed in March but there was a small area that only had a 1mm clear margin which was cut off for further treatment so I was left for 8 weeks to heal & began chemoradiotherapy in mid May. During those 8 weeks I met with my oncologist a couple of times, he offered me into a clinical trial for my treatment & I had all of the prep work done such as planning scans etc.

    Just make sure you know what’s going to be included if you decide to use your private healthcare & as Irene has mentioned check for any limitations on your plan. If you’re unsure at all if you’ve already been assigned an oncologist give his/her secretary a call & ask the question, they will be used to getting these calls or if you’ve the number for a specialist nurse (I was given my nurses number when I received my diagnosis) give them a ring, I rang my nurse a couple of times with queries about appointments in the early days & she was really good at answering my questions. 

    Once diagnosed you just want to get on with getting it dealt with don’t you? I really hope you hear something soon or at least get some answers regarding a timescale for the start of your treatment. 

    Nicola 

  • Thank you all for the comments , I have my health cover benefits handbook so will read in detail.

    Hopefully the MDT have my results now and discuss me this week… the waiting continues Rolling eyes

  • Phone call today from the nurse my 2nd biopsy confirms Squamous cells cancer, which was expected. Next a PET scan and then plan from the cancer centre … things are moving … scary but I feel slightly better knowing.

    Emma x

  • That’s great to hear things are moving   & yes it’s definitely a mixture of emotions that’s for sure but you’re a step closer to starting the demise of this thing!! I hope your PET scan goes well. 

    Nicola 

  • Hi Emz , 

    my journey started last October , the cancer confirmed end of Feb , pet scan ,another biopsy , oncologist appointment , led me to treatment starting on May 13 th 

    I now know that the MDT meet to discuss behind the scenes .. 

    Hope all goes well ? 
    Chrissie xx

  • Hi Emma,

    I was diagnosed on the 30 April of this year and I’ve had my first cancer hospital appointment today, I’ve had 3 scans, CT, MRI and CT Pet Scan, I was told yesterday I just need another scan before my treatment starts and they expect my treatment to start within the next 3-4 weeks. I hope that helps. 

    During the consultation they kept saying the ‘cure’ word which was nice to hear, I hope all goes well for you.

    Very best wishes, Adele xxx

  • Just had my PET scan , hopefully hear from the MDT soon , felt quite upset as it was my first time at the cancer centre lots of people walking about with head scarfs and it made it all so real

  • Had a call from the colorectal nurse and my PET scan has been reviewed they did see a glow on my pituitary gland but she said this could be a number of reasons and they are not too concerned but will MRI my head this Monday to check it out … MDT are discussing me on Tuesday, the stress and worry continues

    Decided to join some friends on a night out tomorrow for food , wine and ABBA tribute just trying to do some normal stuff and stop thinking of this crap going on 

    Hope you all have a lovely weekend , hopefully the sun will be shining

    Emma x