No more scans

Hi all

I’m approaching my one year clear ( hopefully !!) anniversary following recurrent cervical cancer, which came back to my left overary. I was initially diagnosed 1 b1 Adenocarcinoma in December 2013 and had a radical hysterectomy , overarys left due to age , no ther treatment and given all clear , my Gyneacology consultant did refer me to oncology for chemo & radio but the oncologist didn’t think I needed it and said I didn’t meet the criteria.
Was then monitored 3 monthly.
in July 2015 after a routine CT scan showed a “cyst” on the overary which the consultant said " looked " OK"but needed to come out and operated many weeks later , turned out it was recurrence , apparently cervical cancer returning to the overary is only 1% chance of this , so I was that 1 % !! I then began the 5 weeks of chemo and radiotherapy.
My oncologist doesn’t plan on ever scanning me again he says if the cancer were to return again , there’s nothing else they can do and I’ll be palliative , so they don’t plan on scanning me again unless I have any " alarming symptoms " he also said that this cancer was " highly likely to come back "
So I’m approaching a year and my mind is racing already that the cancer is coming back as it came back after a year the first time. They don’t plan on scanning me again , so I’m thinking I’m going to be riddled with it by the time it’s found and just WHAT IF there is hope that I could be treated and if they find it sooner rather than later , I might have a better outcome ,
I never had any symptoms of the " cyst" so if it wasn’t for the scan I would never of known it was there ,
Thanks for reading I’m just feeling really anxious Im going to pay for a scan myself
If it comes to it .

Hi Greeni :-)

I think you are right to go for a scan if it helps to relieve any anxiety. Luckily for me I have had no recurrence and I have been scanned every six months since treatment. This October will be the fifth anniversary of my diagnosis and the first time I will not be scanned, though an ultrasound has been requested by my oncologist. I do find it strange that different oncology departments have such differing practises. Having said all that, 5 weeks of chemo-radiation does seem to really kick this disease into touch and I am very hopeful for you that recurrence is consigned to history.

Be lucky :-)

Hi Greeni,

I do understand how you are feeling at present. Although I believe in the medical profession being honest, it's seems that all too often they word things in such as way as to freak us out. Although I have not had recurrence, I asked the same questions as you, re follow up scans and was told that there wouldn't be any more, and that if it returned treatment would be palliative.  I am a 1b1 poorly differentiated and aggressive, diagnosed Sept 2014. I take great comfort from women who post who have had recurrence, have been treated with different types of chemo and are continuing to lead near normal lives. We have to trust the power of the treatment  and whilst being vigilant for new symptoms, try to get on with life. Not easy I know. I hadn't thought of paying for a scan, but I guess it's always an option, but reassurance doesn't always last for long, and it could become an expensive road. I don't have it sorted Greeni, it still can haunt me at any little symptom, so you are not alone. Good luck with moving on in your life. X

Hi Greeni

Maybe my experience might help.  I had a PET scan in January where there was a tiny light up in a lymph node.  I had another PET in April when that lymph node was clear but I had another area light up, again tiny.  This time I was told they would have another look in July and if the area had grown it would be recurrence and incurable.  I decided all this scanning was too stressful and if there was nothing they could do what was the point.  Anyway I did decide to have another PET in July and thank God I did as while it does show recurrence they have now decided it's operable.  It's going to be major surgery and I may end up with 2 stomas but they say there is no reason to think this won't finally cure me.  If I hadn't had PET scans no-one would have known about the recurrence as I am completely well and by the time I had symptoms it would have been too late (apparently it wouldn't have shown up on CT or MRI). So I've had a complete turnaround and I'm all for scanning now! (BTW I'm a private patient and the scans are around £1200 each so not cheap)

I hope this doesn't sound like I'm telling you what to do but I hope my experience helps you decide what's right for you.

Good luck