Just looking to see if anyone has been or is in a similar situation to me.
I had a RH back in May 21 for 1b2 adenocarcinoma, got the all clear in June 21 with clear margins and no lymph node involvement.
Unfortunately during my EUA yesterday my consultant found a 4cm suspicious mass on my vault which he thinks is a recurrence. So now Ive got to go for MRI and PET scans in the next few weeks.
Just wondering if anyone else has been in the same situation, and what extra treatment they had to have.
Its made me worry how quickly its grown in such a short space of time.
So sorry to hear this, Amy. There will be other ladies here who have been through similar. This is not what anyone wants to hear, having been through all that surgery. I suspect they will give you chemo-radiotherapy if the scans show there is indeed a recurrence. Adenocarcinomas are nasty things and do grow quicker than squamous cell. They will treat you to cure. Xxx
I haven’t been through this as my RH was only in November but I’m really sorry to hear this as it’s the news we all dread. I hope that by knowing about it now they can act quickly and you can be NED again soon.
Did you have any symptoms or was the EUA a standard part of your check up?
I was fine up until the end of December when i had some back pain and discharge. I went back to clinic, they examined me and found that i had granulation tissue and they could also feel a ridge of something where my vault is.
So they sent me for an EUA to treat the granulation tissue and take biopsies and also to put a camera into my bladder. Thats when they have seen this large mass.
The only symptom ive ever had even before my 1st diagnosis was back pain which i just assumed was because i have an office job.
How wrong was I hey haha.
Hope your recovery from surgery is going well, i know how hard those first few months are xx
Sorry to hear your news Amyr17.
I’ve no doubt you’ll get though this but it must be a stressful time right now. Thinking of you and sending love, xx
I’m so sorry you’re going through this and I hope everything turns out ok for you.
I had my last smear back in Oct 2016 which showed severely abnormal results (all previous smears were clear), I was sent to colposcopy and had the usual scans etc and they found I had adenocarcinoma stage 1b2, thankfully it had not spread and I was treated with radical hysterectomy and salpingoopherectomy in January 2017. From then on I had the usual 3 monthly follow ups, then to 6 monthly. Unfortunately in May 2020 I had some slight bleeding. I called my gynae oncology dept and they saw me within a few days, the Dr said she could see a grape sized growth at the top of my vagina. More MRI scans and ct scans later and the results were that it had returned in the vaginal cuff. I started 35 rounds of rads and 5 rounds of chemo in July 2020. Considering we were in the midst of lock down the teams were amazing and my treatment wasn’t delayed at all. So 18 months on and (touch wood) I’m still NED.
Fingers crossed for you and I hope everything goes ok xxx
Im good Amyr17, thank you. I try to stay away from the forum as it’s better for my mental health but I do pop back every now and then to check how people are getting on.
Sending you lots of love and strength for your further treatment. I know you can get through this.
I was in the same situation as yourself 16 years ago. I had RH then a recurrence and I had chemo-radiotherapy. I then ended up with a total pelvic exenteration but I am still here fit and healthy. I hope it proves not to be recurrence but if it is just wanted to say you can still be cured. Good luck xx
So glad to hear you’re doing well Jue. You are a true inspiration and it’s good of you to come on and give a positive message to those who are going through difficult times like this. It’s a struggle - no doubt about it - but one that can be won.
Hi Amyr17, no they didn’t mention any surgery to me at all, they just said I would be sent for chemo/radiotherapy, I wasn’t given an option either. I did ask if I would be having brachytherapy and they said no, reason being was if any rogue cells had broken off then they wanted to have a wide enough range to kill those cells off, whereas Brachy is a more targeted treatment.
How are you Amyr17? Any news on your scans? Fingers crossed for you ? Xx
Thank you for getting back to me, i was just wondering about surgery as my CNS said that can sometimes be an option with recurrence.
My mri is this weekend but still waiting on an appointment for my PET CT, so no news yet.
I called the hospital yesterday to get my biopsy results but they wouldnt give them to me over the phone, she said i have to wait to see the consultant on 16th Feb. So still got a while to wait yet unfortunately.
Sorry to hear you’re going through this. My situation is very similar to yours. I had a trachelectomy for adenocarcinoma in 2018 with clear margins and no lymph involvement. I had some bleeding last year, so was sent for a EUA, and they found a 4cm recurrence at the top of my vagina.
I was told another surgery wasn’t an option as it could seriously damage my bladder and bowel, so they treated me with chemoradiation and two sessions of brachytherapy. I finished treatment 10 weeks ago, and according to my consultant, I’ve had a good response, and the tumour is all but gone. Just waiting on my 3-month scan.
I know how scary the waiting can be, but as Jacks said, they will treat to cure if it is a recurrence. Fingers crossed it isn’t.
Feel free to message me if you have any questions, and let us know how you’re getting on xx
So sorry to hear that It’s such a shock after everything has come back clear from the hysterectomy.
Things should start happening pretty quickly after your PET CT results; I found the waiting the worst bit!
I had 5 cisplatin, 28 fractions of radiotherapy and 2 sessions of brachytherapy. The whole thing lasted just over 7 weeks. The chemo made me feel pretty rubbish tbh, but it was manageable, and many women get through it without too many issues. You’ll have a great team of people around you, and they will hand you a stash of meds to counteract any side effects you might have.
Just remember that this treatment is very effective, and it should destroy the little blighter
