Diagnosis, treatment and outcome

Hi JPE, welcome to the group and bless you -  I imagine it may feel like a whistlestop journey, a sudden halt and bewilderment at what the H just happened. Have you been assigned to Patient Led Follow Up? That’s what would have been my experience if I had not been restaged to a 2 post histology. I’m not surprised that you feel as you do as there’s all the highly charged emotion of the diagnosis and the waiting and the anxiety - and then all of a sudden you may feel like you’ve been left high and dry. You should hopefully find that your hospital does a “life after cancer” course - either as a full day or two, or with weekly sessions - I’d recommend looking into it. Your CNS should be able to advise you on that. It should help you to adjust and move on. 

Hi JPE

I think that with a cancer diagnosis it can make you feel this way. It can all happen so quickly and it is only when the treatment is done/appointments stop that you can begin to process what has happened. 

With a low grade and low stage endometrial cancer it does seem that people are discharged with no follow up appointments. It does not mean however that if you have any symptoms or need to talk things through, that you can not ask to see someone. Most monitoring seems to be for higher grade cancers (they are more likely to recur) or for higher stage cancers. You may not have had radiotherapy or chemo but the surgery alone can wipe you out for a while. Then there is the emotional impact of having had a diagnosis. 

My feelings were all over the place when I had finished treatment, I thought I would be elated that it was over but in fact I felt a bit flat. Would talking things through help? If you give the Support Line a call they can talk you through some counselling that they can offer through BUPA. 

There is also a forum on here that I found helpful;

Life after cancer forum | Macmillan Online Community

Hope this helps a bit, but if there is anything else you need , then please do ask

Jane

Hi.

I'm new on here too. I had similar confusions and didn't really know what was going on at the start. I go across different health boards so I tended to get lost in the system.

I had questions too, I asked my oncologist  for a meeting or a call, even an email address so that I could voice some questions. I still have a few but I got a phone call to asway my worst questions and sent a big email list to his secretary which he answered quickly and told me to let him know if I had anymore. Maybe you could try that?

It is all confusing, even how they explain things sometimes. Hope you get your answers x

I feel pretty similar, I had stage 1b and grade 3, but because I had the POLE mutation I did not need radiotherapy. I had a follow up phone call last week (5 months after surgery) and feel very odd about how so much can happen and then just be over with.