I’m worried about my follow ups as they are internal examinations only and do not involve any scans whatsoever. Is this normal? I keep thinking scans would be better at picking up a reoccurrence early. I’m quite prepared to pay privately for scans once I know exactly what to ask for. Has anyone out there done this?
Cara X x
Hi, I had a follow up after my treatment ended and I was examined, I hate being examined I feel like a piece of meat and the nurse insists of staying with me whilst I take off my underwear and whilst I put it back on! I've got a doctor's appointment this Friday and I am refusing an examination....point blank I'm sick of them.
After this was done I was told I would have follow up scans which I had one a month later and I am still waiting for the 2nd one 2 months down the line...pissed off is not the word!
I don't know what grade you are or what stage your at following treatment but I know it is easier for them to get an idea of what's going on from examining as they need to see if they can see into your cervic and beyond I beleive. Scans help identify of the cancer has spread etc and they take time and are very costly.
It may be that your doctor wants to examine you then if she/he feels that anything has changed then they will order a scan. My cancer is advanced you see xx
Hi Cara,
It seems that it varies from hospital to hospital and there are several women here who have internal examinations only. It may well be less stressful as the scans will show up all sorts of perfectly innocent abnormalities which then need to be further investigated. I have two scans a year and I have to pay for them because I am not part of the National Insurance System where I live. I don't have to go private though and the hospital charges me at cost but that's still about 250 Euro every six months.
Your doctors wouldn't put you at risk so do try to have faith that they are confident that they will spot a recurrence should that happen.
Be lucky :-)
Tivoli
Thank you both so much for your replies. Carmel121 I'm really sorry you're so frustrated with your follow ups. I hope things improve for you. My treatment finished roughly four months ago. I was stage1b and had a hysterectomy followed by radiotherapy and chemotherapy as it was in my lymph nodes. I will bring up scans at my next appointment and if it would be possible to pay privately. I would say for peace of mind but I don't think us ladies will ever get that. Tivoli, you always reply to people and it's so kind you put people at ease.
Cara X x
Only because I know how it feels to be ignored :-)
Hi Cara,
Just wanted to let you know that you aren't alone.
I finished treatment before Christmas and had been expecting my follow ups to include scans but it doesn't seem to be the case. My consultant has told me she doesn't want to subject me to too many scans, and that they won't tell her anything extra to the internal examination (you couldn't see my cancer without a scan to begin with so not sure how the internal examination will now highlight anything abnormal for them). I will get a PET scan at 9 months post treatment though.
I doubt this will reassure you any but wanted to let you know that you aren't alone.
Hope everything is alright at your next follow up.
Jx
Hi Snowdrop
Thank you very much for replying. I asked my oncologist about scans and he said they only scan if you have symptoms but i keep thinking that will be too late? I'm sure they know what they're doing but I do worry about it. I've got a follow up next week so I'm going to ask about having a scan done privately then. I hope your next follow up goes well and wishing you good luck in the future. When you are diagnosed you just want it to go away but then the worry of it coming back starts! I feel so lucky but also worried X x x
Hi,
I think it really varies from hospital to hospital. After finishing my treatment I have had a PET scan at 3, 6, 9 months and an MRI at 6 & 9months. The most recent scans came back mixed, MRI clear, internal exam all clear but PET showed some pick up so I'm having a biopsy in a few weeks. My team have been nothing but thorough and fab I feel to the point we have now moved 3 hours away but I won't change hospitals as I'm so happy with the care. I totally understand your reservations as if they had just done it on internal exam I would have been signed off straight awat. But also the biopsy might come back fine and I've put my body through more trauma?
Hi :) my follow up is the same, palpation and examination only. My professor explained to me anything that required a scan/more investigation would be picked up at these checks and taken from there. Like tivoli said though it does avoid unnecessary stress and investigation for anomalies on the scan results. I've been having these checks for a year now I feel it's very thorough when my doctor does it there's questions, all lymph nodes checked, all round my abdomen and internal checks too....hope this helps xx
Hi I agree different hospitals seem to have different protocol. I'm not sure what's best! I'm in a similar situation to berniebennett had Mri & pet at 3 months - couldn't determine if scarring or active cells. Same repeated at 6 nths - similar results so booked in for eua/ biopsy this Friday. Depending on results I could be scheduled for major surgery to remove everything. I was 2b so had chemo/ radiation first. The scans can bring reassurance but at the minute my stress levels are through the roof!
Hi all,
Thank you so much for your replies. It definitely seems to vary hospital to hospital. I brought the subject up last week with the doctor at my follow up and she said I could have an mri as a complete one off due to me being told I would initially get one after my treatment. I had my operation at a different hospital you see. I do understand why they don't scan all the time as she said people tend to worry and it doesnt always put their minds at rest. I think it will do initially but as some have said it can pick things such as scarring up which can be difficult to interpret.
Fingers crossed :)
Cara X x
Berniebennet and MME - hope your biopsies come back with positive news.
Charlene - glad it isn't just me. The doctor was very thorough at my follow up too which made me feel a lot better about things.
Cara X x
Hi Cara
I'm the same. I had a radical abdominal trachelectomy & lymphnode removal in Oct 2013, and was initially seen by my consultant every 4 months. This involved an internal examination and a feel of my tummy, which I thought was strange as I'd been expecting scans as I'd read so much about follow ups online. I also have a smear test every 12 months, whereas I know some people have them at every check up. I'm now about 2 and a half years post op and have check ups every 6 months. I even moved house and went to a different hospital in a new area - I was hoping the new place would do scans but still nothing. I'm going to ask for one next time I go to my GP or see my consultant, as I think it would put my mind at ease more than a visual exam.
xx
Hi Apples86,
I wish we could all get scans to help ease our worries!
Hope you have some success.
Cara xxx
Hi Cara,
I just wanted to add that the scans really can cause extra unnecessary stress. They often show up some tiny insignificant 'abnormality' that needs to be checked out by another specialist. You usually have to wait at least a couple of weeks to be seen by that specialist which is another two weeks of fearing for your life. I have now had so much pelvic radiation and so many pelvic CT scans that it seems that the CT scans now trigger the same side effects as radiotherapy did in the first place. So be careful what you wish for.
Be lucky :-)
Tivoli
Hi Tivoli,
That is exactly what the nurse said, scans can often pick up little things that you would never think of. She mentioned the radiation as well which I understand. I did push for this scan as kind of a baseline and I would like them to see if I have some bladder damage from radiation (hoping that will show on the scan if I have) as I have been having a few issues lately. Nothing major and nothing to complain about considering what people can experience but it would put my mind at rest a little if they can tell me that's what the problem is. I can understand people wanting scans but I can see how ultimately they can put people under more stress. In a way I think if it comes back they will have more chance of picking it up early from a scan but deep down I know that it probably wouldnt change the outcome. Don't mean that to sound depressing but its just the voices in my head that I try not to listen to!!
Thank you for your words :)
Cara xxxx
