First review appointment

Hi EP17

 I finished my chemo 10 weeks ago, after doing radio/chemo before that, and I am having a CT scan at end of next week, before my first review appt following end of treatment at beginning of Sept.

Mine was stage 3A, and told preventative in case any microscopic cells lurking. I had a dodgy lymph node shown up on MRI pre op, but no cancer cells lit up on PET scan ordered as a result. I initially wondered what a CT scan would show at this stage, given they took out the cancer highlighted by the PET scan, and No Evidence of Disease elsewhere, and treatment ever since. But since finishing treatment I am pleased I am having the CT scan. I haven’t had any scans since the PET one pre op in late Nov.

My oncologist talked initially about CT scan 3 months after end of treatment, so if you were able to get one in a couple of months time, it would be around the same 3 month mark(ish) as me. I would definitely be pushing for it if I was you. 

I must admit I thought I would have been given information when I completed chemo, about what to look out for, etc, but have had nothing to date, only scan in 3 months followed by appt, so I get what you are saying.

Hi EP17

I can understand your concern.

At my post treatment appointment I also asked about CT scans.

I was told that they are not usually done unless there are any concerning symptoms. 

I was put on 12 weekly check ups for 2 years. I was told that most recurrences will be identified through symptoms- bleeding, pain, feeling something is amiss and then a scan would be done. I had a physical examination every 12 weeks- internal and abdominal- looking for signs of recurrence, swollen lymph nodes etc. 

My feeling would be to perhaps ask for a face to face check up -as although they can ask you about any potential reoccurrence symptoms over the phone, I found it reassuring that they physically looked. 

Jane

Hi Waidh.

When I had my PET scan in January it did show a couple of lymph nodes lit up. They didn’t remove them and so the radiotherapy was focused on them.
I had an interim CT scan between the radio/chemo ending and the carbo/taxel starting and it showed the lymph nodes shrinking so I just assumed once everything was finished they’d do another just to check the treatment worked.

I am glad that she did offer to let me have a scan to reassure me but I worry about not having any more after that especially since serous carcinoma is likely to come back. I too thought they would tell me what to look out for but they didn’t.

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This has info about what I was asked each check up and the signs that show there could be a recurrence. 

One of my questions for when I see them in Sept will be about further scans, will let you know what they say to me.

even though my PET scan didn’t light anything up, I still want to understand what that lymph node of mine looks like now after it has been blitzed in radio, and obviously further chemo.

i think once they have had concerns (for me), but actual for you re lymph node involvement, it makes us just a little more anxious and why we would wants scans. 

Thanks Jane

Thank you for this Jane

Brilliant it will be good to see what happens elsewhere in the UK

Hi EP17,

I was diagnosed with Stage 3C Serous  in March 2022. This is my experience so far. After treatment finished in December 2022 I had a CT scan in January 2023 and thereafter every January since then I have had a CT scan. Before the CT scan I also have a routine blood test. I also have a check up every six months with my Consultant. At no point have I ever been told that CT scans have no value, rather the opposite.

My Consultant retired at the end of last year, so in May this year I saw a different consultant who remembered me because she assisted at my operation in 2022. Although my previous consultant had talked about discharging me this year, which I was concerned about because like you I know serous is an aggressive type, my new consultant said she wanted to  continue with twice yearly check ups and a yearly CT scan because serous is aggressive. I found this very reassuring. My only problem now with the CT scan is that I have a mild reaction to the contrast injection they give you during the procedure but next time they will give me steroids before the scan to help with this. 

Three years on I remain well and hopefully this will continue. I know and have been told at every appointment that if I have any concerns about reoccurrence I can call at any time. The only time I feel really anxious is when I am waiting for the CT scan result but I guess everyone feels that! I hope you continue to stay well and have the aftercare you deserve.

Hi Gorleston Girl

Thank you for telling me your experience. Do you mind if I ask whereabouts in the UK you are being treated. I’m in Northern Ireland so it would be good to be able to let my consultant know about any regional differences in treatment.

One thing about my appointment yesterday was the Dr didn’t do any physical examination so no feeling for my lymph nodes nor internal examination to check healing of the vaginal vault. That just makes me want the CT scan even more. So going forward I would definitely prefer regular check ups with yearly CT scans and I will be pressing for that as part of my aftercare.