Follow Up after Treatment

Hello, I was diagnosed with stage 2B cervical cancer just before Christmas 2016.  The tumour was 3.8cm, squamous cell and had spread to the parametrium.  I started treatment mid February - 25 external radiotherapy, with chemo (Cisplatin) once a week followed by 3 sessions of brachytherapy.  I had a lot of side effects from the treatment.  An MRI scan before brachytherapy showed that the tumour had shrunk to 2cm but was still in the parametrium.  I was told that if there was still residual tumour following the brachytherapy, there was the possibility of hysterectomy.  I attended for a follow up last week (6 weeks after treatment had finished) and was given a vaginal examination and was told that it indicated an excellent response and nothing could be detected but this would not be certain until further tests were done (examination using a speculum and an MRI scan).  I should be having the exam with speculum soon but the MRI may not be for some time as the effects of the radiotherapy I am told will still be working.  I asked about follow up treatment after the results were known and particularly what follow up there would be if the results showed no tumour.  I was surprised to be told that if no tumour was present there would be no follow up as this did not prove beneficial.  Does this seem right as I would be very happy to be told that no tumour was present but a little concerned about possible recurrence?  Thanks.  Emily.

It does vary from hospital to hospital, but 3 monthly check ups for the first 18 months seems to be the norm. Some people have MRI scans at every check, some PETs, some internal exams - I guess depending on each individual pattern of response to the treatment. I was told that, as I'd had a pretty thorough going over with a PET, MRI and exam eventually showing NED, that I will now just attend clinic 3 monthly. I suspect that the consultant will do an internal exam at my next appointment, although he didn't mention this, but he did say they'd scanned me enough and unless I had symptoms they would be leaving me alone to heal. It does feel a bit weird, but I guess if the consultant is confident they've got it all then continuing to scan (with the radiation involved) or prod and poke about is likely to do more harm than good. Like I said, I will be going to the clinic 3 monthly though to be kept an eye on - do you think your consultant just meant no further treatment or scans, rather than no contact at all? 

Anne x

Thank you, Anne.  Unless I completely misunderstood, he seemed to be saying that there would be no follow up at all if the tumour was gone.  I asked him what about the case of recurrence - would it be just watching out for symptoms and he said, yes, that and other things but was very vague.  I wish I'd pressed more at the time but I will bring it up when I go for my exam with speculum which, though, is with the gynaecologist and not the cancer doctor who dealt with me for the chemotherapy/radiotherapy/brachytherapy and was the one who made the above remarks. 

Hi Emily. 

Yes post-treatment follow-ups vary from hospital to hospital in regards to scans or physical exams but the WHO(world health organization) has guidelines that indicate that after treatment has completed that you will be seen every 3-4 mths for the first 2 years and then 6 mths for the 3years, by 5 years if there are no issues the can discharge you from their care. I am certain you have misunderstood the follow-up care plan. Make sure you gat some clarification So you know what is to come. Maybe call both your dr's. 

If they plan on not seeing you then I would inquire as to why???

Hi Emily I was staged 1b1 and have 3 monthly follow ups. I go to the women's day clinic where they did my colposcopy so maybe the dr you asked if just meaning you won't be seen by the oncology dep? x

Thanks for your responses, everyone.  I will follow this up.