I'm very new to this, and I keep reading other people's stories and some are similar to mine. my 62 days are up and although I’ve been told I’ve got vaginal cancer that’s all I know every test has been done. I still haven’t heard anything and no date in sight. Can anyone help?
Hi Cdl04 and welcome to the group.
I’m sorry you haven’t heard any updates yet. It might be helpful to add some details to your profile so that members in the group know what tests and/or scans you have already had to see if anyone could offer any advice for you.
Do you know what kind of treatment or surgery you are expecting to have? I know from my own experience of my original diagnosis and recurrence that the targets were not met in my case on either occasion.
Do you have a CNS who you can call to ask for an update? Normally you will receive details of your named nurse following a cancer diagnosis and it would be worth checking with them on what’s happening. If you don’t know who your named nurse is, you could try calling the gynaecology department and ask to be put in touch with the CNS.
It must be difficult being left in this limbo, and I’d certainly want to be giving them a nudge in your position. Please let us know how you get on and if there’s anything else you’d like to ask about or share in the group.
Sarah xx
Hi Cdl04
Thanks so much for the update-that’s very helpful. You are not at all coming across as aggressive, so don’t worry about that-you have reason to be concerned.
The nurses can help by updating you, keeping you in the loop, chasing up results and answering your questions. They are extremely useful to have on your side and chasing things, so please don’t dismiss them as not maybe being helpful for you-they do much more than just make appointments.
Once you have a diagnosis of cancer confirmed and then have scans, the results are all collated together and put to a multidisciplinary meeting. This is a meeting of all the relevant medical professionals involved in your care-oncologists, radiologists and the nurses. These meetings can be scheduled at different times at different hospitals, and might be for example once a week, or another frequency.
The meetings are not just about a single patient, they involve a number of patients who are all discussed, and a treatment plan is made for each patient based on their individual circumstances. Sometimes there can be delays in determining a plan if more information is needed, sometimes things like additional scans or further biopsies, and sometime extra expert advice is sought.
The fact that you have been told you have cancer in your vagina and lymphnodes would suggest that surgery would not be an option, so some other form of treatment might be planned such as chemotherapy and/or radiotherapy. This unfortunately does take time, but the next stage should be to have an appointment with your consultant to discuss the plan and get a start date.
You have really been left at the moment with no more information, so I’d urge you to contact the CNS and find out what the delay is and if you can have any indication of when you will hear more. It’s very difficult not knowing, when we are keen to get on with things, so please chase up after the holiday weekend. You need some help here!
Sarah xx
