Newly diagnosed, no treatment yet

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Hi everyone, first post here. My dad was diagnosed 85 days ago and has yet to start treatment. He had a CT scan that we were told was all clear and they could “cure him with an operation” (not a great statement from a doctor to a patient if they can’t follow it through) He then had a PET scan which showed mets to supraclavicular lymph node, and subsequently told surgery was no longer an option and he is on the palliative pathway. We have had consultations with a professor in Newcastle, a private consultation with The Royal Marsden and have a consultation with a professor at The Christie next week. My dad has his telephone consultation with the oncologist who he was referred to by our local hospital tomorrow on day 86! This is not working the NHS England Cancer guideline for diagnosis to treatment. Has anybody else experienced this kind of delay?

We are all incredibly anxious and worried about what lies ahead for my dad and us as a family. Has anybody had the same diagnosis who can fill us in on treatment and what to expect.

My dad is an otherwise healthy 67 year old retired firefighter, currently working as a school caretaker and has so much more to give and to live for   

  • Can empathise absolutely - my husband was diagnosed on 1 August and first chemo on 4 January so a wait of five months. Living with the uncertainty and the anxiety is incredibly wearing. All I can reflect is that your dad is healthy, so might well respond well to treatment. Have you written up a list of questions to ask the oncologist? And you might think about using the PALS service to raise questions about the undoubted delay - it could be that there were reasons for not acting sooner that might reassure?

  • Hi Willow73,

    Very sorry to hear about your excessive wait time to starting treatment. I know it’s the waiting that is the hardest part of the whole process. It does seem very much like a postcode lottery here. I am in Belfast (where we have a specialised cancer treatment centre) and received my diagnosis on 24th October. After follow-up PET scan, aparoscopy and face-to-face meeting with oncologist, I commenced my first FLOT chemo cycle on 13th December and my third cycle yesterday. I know there are others on this platform who had an even quicker timescale so I would definitely be making some calls if I were you. Good luck and I wish you well for all that lies ahead…

  • Hi Willow, 

    Thank you for having the courage to write on the forum, there is a wealth of support and information here, and I hope that you will soon get some of the answers that you are looking for.

    The difficulty with any C diagnosis, is that everyone has something a little different to someone else, and with OC there are also different types of tumours too, so it can be difficult when read others stories to marry those in with your own experience.  

    It is my experience that a cancer diagnosis of a loved one, also brings on an underlying anger, sadness and lack of control, all of which makes it harder for us to understand the goings on, behind the scenes of our NHS.  

    Similar to your Dad, My husband was told that they thought that they had caught the OC in time and with surgery things would be ok, it was after further investigation that we were advised that he had mets, extremely high readings in his blood and had a very short amount of time left with us, even with treatment. 

    On both counts, they had been wrong, he couldn't have surgery, but he also far exceeded their life prognosis,  Back in May 2020 I felt like my world had just crumbled and I was desperately picking up the pieces, not only were we dealing with this diagnosis, but also of a positive Covid19 result also.. with the whole country on lock down, we were alone, and almost everything that came next, my husband had to deal with alone...  So in many ways I was angry, and wanted better, so I understand your fear and frustration. 

    As you can see by the date given, original diagnosis, was almost 4 years ago, my husband has been on treatment ever since, Palliative, (which is a very scary word) but also, for the most part, a really "healthy" looking guy... If you didn't know, you wouldn't know... although right now the OC is on the move again, we intend to not let it get in the way of our lives.  What I am trying to say is, as best as possible, focus on the positive, because the positive helps you to cope with things better, it doesn't eat away at you quite as much as the negative does. 

    They have found the tumour, they know now of the Mets, they will need bloods and further investigation to know exactly what they are up against and this will all be going on in the background. 

    I really do hope that your Dad gets more information and plan of action from the Telephone consultation, and that his treatment starts soon.

    Lowe'  

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  • Thank you for your reply. I’m sorry that you also had a long wait. My dad has finally spoken to his oncologist on the phone and has a repeat CT on Monday. As for the wait, the professors who we have spoken to are all baffled by it so we are in the process of putting in a complaint. Wishing you and your family the very best luck x x lots of love and healing hugs 

  • Hi, thank you for your reply. What an incredibly inspirational story you have. Fingers crossed my dad has the same results x