Diagnosed with Womb Cancer Dec 2022

Hi Scotty142, I was grade 1 stage 2 - no LVSI but a few cancerous cells on top of my cervix. I had 25 x radio and 2 x brachy finishing mid May 2022. I had a check up in Sep 2022 and was told that I’d have another in Dec 2022 then be put on patient-led follow up. At my Dec appointment I said I wasn’t happy to go onto that as I understood that I if this cancer was to reoccur, it typically reoccurred during the first two years. They said it was fine to continue being seen face to face if I wasn't confident enough to go onto patient-led. It wasn’t about lack of confidence, I just thought it was sensible. So I stayed on face to face appointments every three months through 2023, but at my January 2024 appointment I requested the next one to be 6 months. So my next one will be in July 2024, which takes me up to the two years, I am undecided as to whether I’ll request 6 months or a year after that. 

Hi Scotty 142

I was grade 3 stage 1b with LVSI. Treatment was surgery April 2022 followed by chemo and external beam radiotherapy. 

I have 12 weekly checks for the first 2 years post treatment. They finish in October this year and then I believe it is patient led follow up. (until the 5 year mark) 

I know there are differences between hospitals but I would suggest asking to be seen at least a couple of times more for the reassurance. Although they can ask you questions over the phone and ask you to look out for side effects- the reassurance of them actually examining you is better I feel. They can then also monitor how you are doing generally and whether you are suffering any long term effects. 

Maybe email the CNS team at your hospital and see what they say. My actual review appointments are actually fairly quick. 

Jane

Hi Scotty 142. My diagnosis was Grade 1 stage 1a with LVSI.  I have just completed 4 sessions of brachytherapy and am due to see my oncologist in June. The hospital which carried out my operation set out a review plan which was surveillance every 3 months for two years then 4 monthly for a year then 6 monthly then yearly. This was before they had heard back from the MDT and the discovery of the LVSI. My brachytherapy was carried out at the specialist regional cancer centre and when I last spoke to my CNS she said that they like to continue with follow ups and not transfer back to the local hospital. As I said I don't know exactly what that follow up will be but I am assuming that it will be along the same lines as that set out by the the local hospital as they work very closely with the regional centre (the consultant who saw me initially had just moved across from the regional centre). Not sure if this helps you or not! 

Thank you Hydrangea this is very helpful as I do feel I should make contact with the CNS where I had my radiotherapy to get their opinion on the way forward.

Thank you for this I will definitely make contact as I feel this will help with my anxious thoughts re recurrence.

Hi Scotty 142

I had a full hysterectomy last summer after stage 1a, grade 3 adenocarcinoma diagnosis. They also removed 13 lymph nodes of which one was found to be cancerous plus also LVSI was found. My stage went to 3c and grade 2/3. I've had chemo and external radiotherapy which finished early Feb this year. Just had first 3 month scan plus blood test and thankfully all was OK. Having two other 3 monthly checks this year and then possibly the same next year but it may go to every 6 months. I've not been told yet how long the checks will continue for. I was told I will not have a scan with every check unless I start reporting issues but my bloods will be checked and I am likely to have an internal examination. For me having these checks with or without a scan really help give reassurance. I felt after the treatment finished a bit overwhelmed as suddenly the safety net of the drugs and radiotherapy have been taken away and you are going it alone. It's very odd as everyone presumes you are so happy that the treatment has finished and it's not always that straightforward.

I hope you get some positive help from your CNS with your situation. All the very best. X

Thank you for your reply to my question re my cancer journey it is very helpful.

Hi It is a few months since I have posted any questions as I have been progressing well, however I just this weekend have developed low down pain and what feels like a Urine infection having had no symptoms at all since my treatment completed May 2023, last see by Consultant in October 23, she was happy to discharge me from her care and go to patient led if having problems. Unsure as to whether I should contact GP, or Cancer nurse Specialist. Thank you grateful for advice

Hi Scotty,

If it is feeling like a UTI and you have previously had one and recognise symptoms I would tend to go to GP first. if it is an infection brewing then a simple urine test and antibiotics would clear it. Most times when I have had a UTI they clear within a couple of days with antibiotics.

If then you continue to have any symptoms then I would contact CNS directly. Or if you have any symptoms that feel different to a UTI then I would pop and email to CNS for advice. 

Jane

Thank you for your advice I will contact GP and have tests for any infection in case there is infection brewing.