Finished treatment but no scan offered.

Hi

i I was stage 3A with concerns pre op as to whether lymph node involvement so had a PET scan pre op in November, which didn’t show anything in lymph nodes. Finished treatment at end of May, 25 radio with 2 lots Cisplatin, followed by 4 lots of Paclitaxel/carbo. I had CT scan on Friday, which I was told was routine 3 months post end of treatment, with follow up in a couple of weeks.  

one of my questions will be what happens going forwards re scans etc.

I had the same treatment as you and attended my first review appointment 2 weeks ago where I was as told that it was not usual for scans to be offered at Belfast Cancer Centre which is the main centre in Northern Ireland. 

I too was upset especially since my consent form specified I was having curative treatment rather than adjuvant due to there being cancer in a couple of lymph nodes. So how am I supposed to know if I’ve been cured without a scan. 

I did voice my concern at the review and so they said I could have a scan and I’m currently waiting for an appointment to be made. However I’ve discovered on this forum that there is quite a difference across the UK in how womb cancer patients are monitored after treatment is finished and I shall be pressing for further scans. 

Thank you Waidh. Helps to know that a scan may be a possibility 3 months after treatment finishes. I am only just over a month since treatment, so hopefully a possibility in the future. I will ask at my next appointment. 

Like you there were concerns about a lymph node before surgery and a pet scan was done and consultant decided it was just oddly shaped. However, the oncologist disagreed and said there was likely cancer in the lymph node and said that would make me stage 3c. Histology also showed cancer going into Vagina so am hoping for a scan at some point to let me know treatment has worked.  

Glad to hear your lymph node was clear and you have had a ct-scan after chemo and radiotherapy. And yes, a good question to ask what happens going forwards re scans etc. Hope the follow up to the ct-scan goes well and you find out what is going to happen going forwards. 

Thanks.  They were fairly insistent the scan was 3 months post treatment. I actually got an appt exactly 2 months after, and when discussed with nurse the scan got pushed back a couple of weeks. 

Given a few people are talking about post treatment scans at moment, I will post what they say to me re further scans.

Hi EP17, sorry to hear that you have also been told its not usual for scans to be offered. Like you, my oncologist said my treatment was curative. I feel exactly the same, how are we supposed to know if we are cancer free or not? 

I am glad you voiced your concerns at your review and are now getting a scan. Thank you for telling me that as now I will prepare myself to voice my concerns at my next appointment and hope a scan is offered then. 

I had heard of people celebrating being cancer free so many times that I thought scans were a certainty, especially for those of us with cancer still present after surgery. Then heard of a few people saying they did not have a scan at the end of treatment but their treatment was adjuvant. What you say about there being a difference around the UK in how womb cancer patients are monitored after treatment explains alot doesn't it! Looks like I might have a fight on my hands to get scans in my area and will prepare for that. Thank you for sharing your experience. 

Hope you get further scans! 

I didn't realize a few people were talking about post treatment scans, will have to go and take a look. Thank you for letting me know and thank you in advance for keeping us posted on what they say to you about further scans. 

Hope your appointment goes well. 

If you aren't offered a scan 3 months after the end of treatment, please push for it. 

I've just been told that mine has shown that the cancer is still present (following surgery, 27 x adjuvant external Radiotherapy and 2 x brachythetrapy) and will now be  considered as controllable (via chemotherapy and/or immunology) rather than curable. 

Sorry to hear that, sending you a big hug.  

Poohsticks, I am sorry to hear this. Frustrating that after so much treatment the cancer is still there. I will add, that I was told that radiotherapy continues working on destroying cancer for months after treatment has finished, and do hope that is the case for you. And of course a big change to go from curable to controllable. I have chatted to a couple of ladies who are stage 4 and one in particular found chemo worked better for her as her cancer is a rare kind, and she is doing very well right now. I hope Chemo and immunotherapy work well for you. 

Thank you for your advice, I will be pushing for a scan at my next appointment in 3 months time, so hopefully I will know if my treatment has been successful or not by the end of this year. 

Sending you hugs. 

Am sorry to hear that POOsticks. 

Do let us know if there is anything you need