Follow ups

Good question Lara lou xx. It does depend on areas, I had four monthly checks for near two years, and now six monthly checks . I was due to have an x ray at one year but had been scanned too much and never had it, but they were happy in the end not to do one. And I was 1a grade 2 but borderline on staging so it very much depends on the procedures of your hospitals and how confident they are with your healing and health in general.

I wonder if it depends on age to a certain extent. I think they are more cautious with younger women.. I was 1a grade 2. I had 2 check ups within a year and now have no more!!! Any problems I have to ring up. I was a bit taken aback at first, but have got my head around it now. I don't often think about it.  XXXXX 

Maybe it is something to do with age NannyAnny, I have to admit I have found it really does seem to vary from hospital to hospital. It could be as you say they maybe more cautious with younger women. I did get told that they tend to find that younger women can either fly though all the treatment and recover very well with no issues to they tend to have lots of complications. I think a lot is to do maybe with the surgical menopause that it throws you in it and all the joys that can have. We are all different, but I have to admit I think for some they have no checks ups just phone if there is any issues, which sounds great because the medical team sound confident you be fine but I also find it a bit scary being in the dark and its great once you get though that, I am glad youve got that though your head and you can go on and not think about it. I am really pleased for you. I know you said you had a couple of checks within a year, was it only one year post op you had the checks? Must admit going to six monthly checks now is great, I know I have other issues but to know everything down there is looking good really does help the confidence

Hi Lara lou xx

You are in good company with your question as in the past lots of people here have asked about check-ups.   I know that I still get somewhat anxious before one and I was treated over 4 years ago!   (Perhaps subconsciously I am wondering if my luck could run out).

From all the posts I have read about checks it seems clear that there is no single standard,  probably because we are all different and doctors/ hospitals are different too.  Some women with an early stage diagnosis don't even have any formal checks at all but are encouraged to contact their CNS with any concerns.  

I can remember how worried you were when you first joined this forum and have been really glad to see how you have recovered so well, both physically and emotionally, since then.  Well done!  It occurs to me that your doctor may feel that a transvaginal scan may give you further reassurance that all is well.

Hi my friends- I was 1a grade 1 (aged 46 and pre-menopause- also no symptoms- just very lucky I went to check out the heavy periods I’d always had but which were awkward with my new job) and am on 3 monthly checks for two years then it goes to 4 monthly then 6 monthly up to the 5 yr mark. I have an internal, a prodding of the stomach and groin and a chat. No scans, I did ask and was told the probable first symptom of any (extremely unlikely) recurrence would be bleeding so if that happens then I’d be scanned. I’m always reassured that recurrence is extremely unusual at the stage and grade I was- although I don’t think that way in the dead of night I must say. My oncologist said that in trials he’s led in another region of the uk it was shown that it’s just as safe to have patient led checkups as scheduled ones, and that if he didn’t have to abide by the local protocol where he is now  he’d not need to see me at all unless I asked. (I’m a worrier so I’m glad I do see him!) 

I’m finding nightly sweating and insomnia plus moods very tricky, especially as I have shift based work which is unpredictable from day to day, so I’ve asked for help and have been prescribed hrt patches (oestrogen only). However...I’m a bit nervous about using as I was told the studies into risk in a grade 1a stage 1 person are too small to know either way. Part of me thinks I have to improve my quality of life but part of me thinks it’s daft to take any risk.. so the patches remain in the bathroom cupboard mocking me!! Wish I knew what to do xxx

Thanks gbear, I hope they are not scanning me because they are not confident lol, I wonder if in my case it’s because I find the speculum hard to tolerate, I will ask them when I see them next month, I’m glad you are moved to six months now hun, that must really help mentally xx

Hi nannyanny, I think you may have something there, because it’s not common in women under fifty, I wonder if they are extra cautious as you  say, that does make sense xx

Hi oldady. Aww what a lovely thing to say, I have only got where I am because of you and ladies like you, helping and propping me up, it’s funny in a way when I look back, I was on here 24/7 asking the same questions over and over, then as soon as you had settled one fear, I was on here again with another, bless you all for your patience, as for you, your luck will  not run out hun, you are doing good 4=years on and will continue to do so, as for the scan, you could be right, maybe it’s to help put my mind at rest cos I had emailed the cancer nurse telling her I was scared of recurrence, so it could be why, thank you , hope all is good with you xx

Hi worried, I was also told I could have a low dose hrt patch, don’t suffer, give it a go it may just help, they would not give it you if they couldn’t xx

Hi NannyAnny,I was the same as you only mine was Serous type2  the more aggressive type.However at my last appointments was asked if I wanted to change to self referall if I had any symtomss of recurrence. I agreed as at the time there was another health worry that as it happens was negative.Now I am left wondering if I made the right decision to not have check ups.Just have to be vigilant as ever.Its eighteen months since my hysterectomy  I was on three monthly checks.Never once had c.t or m.r.i. 73 yrs old at time of op.so age probably does have a bearing on follow ups. X