After some advice please, was diagnosed Sept 21, stage 2b squamous cell carcinoma, the cancer within the cervix had spread to the vaginal wall. It all seemed to be good throughout finished all treatments by 10th of feb 22, but then when I went for my post treatment scan he said my tumour had responded but there was still an abnormality on my cervix, he’s hoping it’s scar tissue but said it could also potentially be tumour. Has anyone experienced this before? Any help would be great, thank you
I finished treatment in September 21 for stage 2b and had first post treatment scan and appointment in November i was told there was an area still showing which could be one of three things scar tissue, inflammation or residual cancer. I had second scan and follow up in March 22 where the area had reduced and was told the same as before. Consultant said the only way of telling for sure is to do a biopsy and he felt it was not necessary. He said a biopsy can cause issues as after radiotherapy the area is very fragile and doesn’t heal well so ulcers and infections can become a problem. He said best to just leave alone for now and see what its like at next scan. My third appointment is August which is 5 months after second one consultant said he is not concerned and i think this is true as they wouldn’t leave it for 5 months if they were worried
Everyone wants go get told NED at first post treatment appointment but the reality is many don’t my consultant said about 50% dont get NED at first post treatment appointment. The treatment is still working so be patient i know its hard.
Any questions just ask
Take care x
I was also 2b, but adenocarcinoma. I did actually get NED at my first post treatment scan, but something unusual was picked up at a visual check up 6 months after this. Could have been scar tissue but unfortunately a biopsy under anaesthetic confirmed it was residual cancer not picked up on the mri. So, slightly different for me.
I hope yours will have a simple explanation-it’s early days post treatment for you. x
Thank you for commenting. I’m sorry to hear you had residual cancer, are you okay now? Xx
Thank you for commenting. My friend who was diagnosed same day was stage 3c and she got NED in post treatment scan so I think I just assumed I’d get the same, I was naive to think it was so black and white. She did have 6 weeks of a clinical trial chemo before the normal treatment, so that’s probably why, I was advised against it, I’ve wondered the entire time if I would regret not doing it. I asked if I could have a biopsy and they said they wouldn’t know which part of my cervix to biopsy, I also asked if I could have a pet scan but was told it was too small to be picked up. Will just have to wait it out for the next mri, the waiting is definitely the worst. Xx
Yes thanks -I’m doing pretty well. It’s tough waiting to find out more-I was unlucky, but still kept thinking positively right up to the day it was confirmed. x
Hi @Sarah1471 - I was stage 3b with lymph node involvement and completed treatment January 18. My three month scan results are similar to yours - my lymph nodes are clear and my 7 cm mass is now showing as 1.5. There is a possibility is could be residual tumour, but my oncologist believes it is scar tissue. I know it’s not the result everyone is looking for off the bat, but the treatment continues to work and the body needs time to clear things out. It’s hard not to dwell and we all have our own ways of coping. I am trying my best best to get outside, stay busy doing things that make me feel good and just be in the moment. This forum has been a great resource for me to learn more and people are kind and supportive.
I guess what I am trying to say is your three month scan is on the more positive than negative range. You aren’t alone.
Quick question, when you were dilating with this “ abnormality”, did you find it was becoming more uncomfortable? I am, and also, there seems to be a tad more spotting which is worrying me Hope your well xx
Hi @Sarah1471 - So far I am not spotting or having any of the cervical cancer symptoms I had before. I just seem to be having GI issues and have been referred to a specialist.
Do you have another scan coming up soon? My next one is July 14 with results on the 21. I have my fingers crossed for “no change” or evidence of shrinking and have everything crossed for you!
I’m keeping my fingers crossed for you. I’m so scared, this nightmare seems to go on forever xx
Sarah, please tell your CNS what you are experiencing (if you haven’t done so already). You should be due another scan now, but it sounds like you need it anyway, to either confirm any changes and/or reassure you that everything is going in the right direction. This is such a worrying time for all of us who have had treatment and you’re right - it feels like it will go on forever. There are always cases where the initial treatment doesn’t quite blast that tumour to oblivion and it’s important to find that out ASAP if it happens. In many other cases it is just residual inflammation, scar tissue or fluid and will resolve in the next few months. We hope you’re in the latter group, but don’t neglect to tell your team any symptoms and if you are worried about anything that seems to be changing. Fingers crossed. x
I agree with Jack that you need to bring this to the attention of your team. Your symptoms are totally compatable with radiation damage and thats the most likely cause but you must get more sinister causes eliminated. If there is still cancer there then it can still be successfully treated but delays might potentially reduce the chances of success. Knowledge is power!
Hey, how are you? Did your scan go ok? I have my 6 month scan tmrw. So nervous, I had quite a bad bleed after sex the other day, it was dripping down my legs onto the floor so as im sure you know, im worried xx
Did you bring your issues to their attention? It seems a while since you posted and i was wondering what happened next. Good luck with scan tomorrow.
I did, they basically wanted to wait and see what the scan came back with, so will find out on the 16th when I see my oncologist for results x
Not too long to find out and hopefully put your mind at rest.
Hi @Sarah1471 - You have been on my mind these days. Thank you so much for asking about my 6 month scan results - I got good news! While my oncologist said she can’t use the term NED for me yet, the tumor has continued to shrink to the point that she wouldn’t refer to it as residual tumour and feels there is nothing to be concerned about cancer wise.
I am having lots of bowel issues though - bleeding from my bowels which is likely due to damage from treatment. Seeing a specialist in August to get it looked at.
I am so sorry you are having the big bleeds, that would be very scary. I am glad you have communicated it to your team and that you have an appointment coming up. I have everything crossed for you and hope you will keep us posted.
Wow that’s great news I’m really pleased for you. Sorry to hear of your bowel issues though, the after effects aren’t pleasant are they. I’m having issues myself. Scan was all done this morning, so 11 days till I find out my next steps. Xx
Saw the oncologist today, the abnormality is still there, it remains unchanged. She did an internal exam to see what she could feel and it bled a bit. She’s referring me to gynae so someone can have a proper look and see if they can shed any light. She also said there was signal…. But this can either be scar tissue inflammation still, or residual cancer. Feeling pleased at no growth, but disappointment aswell that it’s still an unanswered problem xx
Did the scan give any additional info? I had a scan after a visual check and then went to biopsy under anaesthetic. It’s absolutely horrible not knowing what is there, so I really feel for you. xx