Confused

  • 6 replies
  • 86 subscribers
  • 684 views

Had a meeting with a registrar today and CNS, confirmed surgery for 25th.  I’ll be in hospital for approximately 3 days depending on pain level, I have Fibromyalgia and Osteoarthritis which doesn’t help.

Pre-op due this Friday which is pretty straightforward.

Received an appointment at the Clinical Oncology clinic and I’m confused as no one has told me to expect an appointment with them.  Is this something that everyone has?    I did google it and thought it would be more useful after I have results from removed lymph nodes.

I was also told that we should cancel our holiday as I won’t be fit to fly and if any further treatment is required then it would start immediately.  My husband and I are both disappointed about this as we should be leaving in 8 weeks.

There are so many lovely ladies who are also on this journey or are here to offer support and help from their previous treatments.  I appreciate all your support and input and I thank you all for any reassurance that you give.

Linda x

  • Hi Grandma03

    I suspect a scan you've had may had indicated a possible extramural or node risk, so the hospital is getting resources ready to offer you swift treatment options if it is confirmed after surgery.

    However, to avoid uncertainty I'd suggest you contact your CNS to ask them to clarify the reason for oncology involvement.

  • Thank you Crumpetsortoast,, I emailed my CNS earlier and it could be 2 days before she replies my mind is whirring with this is worse than I’m being told.

    I might be jumping to conclusions imagining that further treatment is a certainty rather than a possibility.

  • Hello Linda

    Am glad that you have a date for your surgery and do not have to wait too long. 

    There seems to be differences in how different hospitals do things but I am assuming that the clinical oncology clinic appointment is for some time after the surgery? If so it is likely to be to discuss how you are recovering from the surgery and to go through any post op pathology. When the pathology comes back it will have more details on the stage and grade and this helps them decide whether you need to have some follow up treatment or not. You could ask your CNS when you go in for your pre op on Friday?

    If the appointment is before your surgery it may be to talk about the surgery in more detail? But I think the best person to ask in your CNS.

    I understand that it is disappointing that you need to cancel your holiday, especially when it is something you have been looking forward to but it is probably for the best as you want to feel well enough to enjoy it. 

    I hope that you appointment on Friday goes ok and please do ask if there is anything you need.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Linda, I’d suggest phoning your CNS for clarification rather than waiting for the email response. My CNS told me to email if not important but to phone if urgent or important. 

  • Hi MarmiteFan59 I’ll give her a call this morning to set my mind at rest.

  • As others have said probably best to get clarification on this. I had a post op appointment with the surgeon 10 days after my hysterectomy. She confirmed my histology and talked in general terms about further treatment. She asked me if I'd like to see the oncologist which I said I would. I then received an appointment with him about 2 weeks later. Arrangements do tend to vary between different hospitals.