Post treatment fear

Hi Ma80

Having a diagnosis of cancer and treatment can all happen quickly and be overwhelming. Once treatment has finished it is natural to feel a bit all over the place. There is no right or wrong way to feel and I personally remember feeling a bit flat once my treatment had ended. I thought I would feel over the moon but instead I felt worried about what may lay ahead. 

A grade 1 and stage 1 cancer has the lowest chance of any recurrence and to be put on to patient led follow up does tend to be what happens. It does not mean that you have no support but rather instead of going in for an appointment every few months- they give you details of what to look out for and if you have any worries they will give you a number to call and then they will likely give an appointment to be seen. 

When you have your review appointment there is no harm in asking to be seen again face to face if this is what you prefer. I think also to talk through your concerns and to get some reassurance. 

The issue with social media groups from my experience, is although there may be some people on there who want to be supportive- they are not regulated in anyway. Although it may seem that there are a lot of people on there who have had recurrences at stage 1/grade 1- it may not be particularly representative. The people who would tend to post again would be the people who have had issues rather than the vast majority who have had treatment and recovered and no longer connect with the group. 

It is possible to have recurrences with any cancer at any stage however your cancer was of a low grade and early stage- in these circumstances the hysterectomy would be curative- the cancer was contained within the womb and that was removed. 

Perhaps have a chat with your CNS if you feel some form of counselling may help- I know it was an option at my hospital. Also if you talk through the signs of recurrence with the CNS and know what to look out for, this may also help you feel more confident in moving forward. And with PIFU if at any point you do have something that concerns you- give them a call and get checked out. 

Jane

Jane as always thankyou. You really are and have been so very kind to me on these posts. I do understand i am also in surgical menopause and probably has something to do with my moods. I have some therapy organised to start now this Monday. I will come away from the fb groups my husband does not like me on them as he feels everyone's experience is unique to them while stages and grades maybe the same as mine other factors play a part also. 

Hi Ma80, post op my histology was grade 1 stage 2 (instead of the predicted stage 1) and I had radio and brachy. I was told I’d be put onto patient-led follow up post treatment but I said I wasn’t happy with that and asked if I could have face to face appointments. They agreed and that’s what I’ve had for the past 3.5 years so far. I just wondered if you’d tried asking if you could have face to face ?

Hi MarmiteFan59, I haven't seen my consultant since my op. I have a review at the end of March but I was told if I staged low id be discharged to a pifu pathway and no need for vault smears either.  I was planning on asking  weather I could have a once yearly check even just a smear fr the next couple of years. Im quite a shy person I dont like bothering people and I dont think id push to see anyone if I had a worrying symptom which worries me.

Hi again Ma80, the thing is, what you may not realise is that some women want to be on patient led and that’s one reason why they do this. So if you’re not happy/confident to go onto patient led you could just ask like I did! I had 3 monthly check ups and internal exams for the first year, 6 monthly check ups and internal exams for the second year and now I’m on annual. They were very happy to oblige and I didn’t have to push, just to ask. I personally wouldn’t want a vault smear - the internal and external exam is thorough enough for me. You have nothing to lose by just asking.