My name is Jenny and I had cervical cancer 28 years ago . I had a radical hysterectomy followed with radiotherapy at age 29. I recently found a lump behind my vaginal wall and I have been diagnosed with cancer again. The same squamous cell carcinoma grade 2 as when I had the cervical cancer .They can’t be sure if it is a recurrence or possibly caused by my radiotherapy treatment or I’m just very unlucky. Due to have an exploratory op next week then afterwards the operation to remove the tumour which is only small in size and possibly other therapy but as I’ve already had radiotherapy this might prove difficult. I never dreamed after getting to nearly 30 years clear this would happen but I’m also glad I found the lump. I have no spread, it is contained to the pelvis. I have had sleepless nights, dark thoughts and find it all very emotional going through it all again at age 58 for the second time.
I’m sorry that you’ve found yourself back here, having to fight this again. It sounds like you have caught it early enough and hopefully they can remove it successfully for you. Sending lots of strength and good vibes x
Thanks Joix. I thought after such a long time I was cured. Had I know there was always a possibility of a recurrence after nearly 30 years I would maybe have not dismissed it as scar tissue which is what I did initially then thought I must get it checked to be sure. I’m so glad I did. It kept niggling away at me so I decided to act. Then discovered that ladies do have recurrence years later! We must make sure that if something doesn’t seem right then get it checked. I think I’m going to have to have my lymph nodes removed and an operation which will be decided after the exploratory op next week. Cross fingers.
So sorry to hear this, Jenjun - it’s what we always fear isn’t it - but after 30 years you would not expect a recurrence. Sounds like it’s in one place and surgery will be a good option. Well done you for spotting something was wrong - I can’t imagine how you found a lump behind the vaginal wall - that was amazingly clever of you, but what a good thing you did. Possibly the worst outcome is the emotional impact - but we’re all grateful that it’s going to be cleared. At 58 you’ve got a lot of life to live!
So sorry to hear this but you have come to the right place. There’s a lady called Petesdragon who went through the same thing, in her case it was a radio induced tumor, but she is thriving! You might want to reach out to her
I am sorry you have to go through this again. It’s unfair.
I am having a MRI scan on Saturday and I am seeing the gynae consultant on Wednesday 22nd September for the results and I am petrified, scared and terrified.
I had cervical cancer nearly 7 years ago and I had chemotherapy, radiotherapy, brachytherapy, which left me with a colostomy, urostomy and a fistula. I have been to and fro A&E for 2 years with bowel obstructions and I have had 3 CT scans and every time I ask them if there is anything “ominous” and every time they told me no, it’s scar tissue.
The CT scan I had in April, I was told I had radiation enteritis and I asked if there was anything “ominous” and I was told no. However, last week I have been experiencing light vaginal bleeding and I rang the gynae nurse who booked me into the gynae clinic. I saw a doctor who told me the first radiologist who checked the scan in April signed it off as everything was okay, however another radiologist checked it and found a shadow/mass and apparently they wrote to me and apparently I rang them and cancelled the appointment! I told the doctor this was not true but she didn’t believe me. I asked her where the shadow/mass is but she said she didn’t know and was referring me for an urgent MRI scan. I left in tears and very scared. She didn’t give me any hope.
I received a phone call this morning and an appointment was made for Saturday morning to have a MRI scan and I receive the results in just over a weeks times, as I have previously mentioned.
I can’t have anymore radiotherapy and chemotherapy made me very ill previously. I holding onto the fact that it was missed by the first radiologist and therefore is small and fingers crossed contained.
I hope you are feeling better, sorry I know that sounds daft but I hope they have a plan of action for you. Yes, we do need to keep on but in my case they didn’t take care and no one contacted me by letter or by phone.
Please keep us updated and I will do the same.
Sending you love and good vibes,
You sound lovely. Sorry you have such a hard time 7 years ago and now for a shadow/mass to be missed by a radiologist. As if you would have cancelled an appointment !!
My cancer was squamous cell type moderate differential. I was treated at Barts 30 years ago.had 6 weeks radiotherapy. Now I’m at UCLH . So far they have been great. Ive gone through so many emotions . The first time round I had a one year old and 3 year old. Now they are 29 and 32. My daughter is amazing. My tumour is 2 cm x 3 cm just behind my vaginal wall. I have a couple of suspicious lymph nodes too. Will find out in a couple of days after my exploratory op what the plan is. They are finding out if I can take more radiotherapy or if I’ve had my quota. I think I will feel better once I’ve got the treatment underway. At the moment each day that goes by seems like forever! I hope yours is contained if it comes bk cancer. You never know it might not be cancer. Take care and stay positive. We can do this.
Thank you for your lovely reply and taking the time as you are going through a load of poop.
I guess you will feel better when you have some sort of plan. It’s the what ifs scenarios we that are playing around in our heads. Fingers crossed you will be treated quick and get better even quicker. I am so pleased your family are there for you and bouying you on.
It was the look of pity the doctor gave me on Friday. She didn’t believe I hadn’t received a letter or that I hadn’t cancelled it. I agree how can a shadow/mass be missed? It is basic and the first thing the radiologist looks for. Plus they should have rang me when they found something not send a letter.
I am going for over to my local Maggie’s centre this week for a chat. I can drive and have a car and I don’t intend on giving that up for anyone or anything.
I live at home with my elderly parents. My dad is 82 and my mum is 83 and is in poor health and is on oxygen for about 15 hours a day.
Please keep us updated and fingers crossed you get your surgery soon and find out what treatment you will be receiving. And to in return will keep you updated too.
Sending you love and good vibes,
Hello Jenny, you’ve had a horrible shock and I understand something of how you are feeling. I had a radical hysterectomy followed by chemo-radio therapy some 20 years ago. I had a recurrence 9 years later, it manifested as severe back pain and at first my consultant didn’t quite believe it was possible that it had come back so many years later. But it does ! It turned out to be a secondary tumour which had grown around my vena cava vein (sorry, I am not good with medical terms). I had another quite dramatic operation (because of where the large secondary tumour was) and more chemo-radio therapy. It was horrible news when it came back because I had to tell my daughter who was a young teenager and it hit her hard. Nevertheless I recovered from the operation and treatment quite quickly and feel I have a full and lucky life now, I do have some trouble with my bowels and occasional stomach pains which I think is probably due to all the radiotherapy I had. I am 61 and still think of myself as fit and healthy, hang in there and I’m sure you’ll get through it. I found that the second round of chemo-radio therapy wasn’t too bad although I did sob with sheer relief once it was over. Tomorrow is another day and I’m sure you’ve found ways to help your daughters through difficult times - dig deep and it will be over soon.
Very best wishes.
So sorry you are going through this. I’ve literally just had 8 weeks of scary recurrence hell. I was successfully treated 2.5 years ago for stage 2b squamous cell with lymph node involvement.
A couple of months ago i started having awful stomach pains which was believed to be damage to bowel and food intolerance from chemo rads and brachy . A few weeks later i had a large vaginal bleed accompanied with leg and hip pain.
Everything was followed up swiftly by my oncology team with examination and MRI…days later having the awful call saying it was back…a 3.5 x 1.5cm tumour.
A few days later i met with surgeon as surgery would be my only option who warned me i may end up also having my bowel and bladder removed as well as hysterectomy. I was devastated.
However everything changed following PET scan and EUA. Scan showed no cancer…no metastasis!!! On the day of EUA surgeon performed a LLETZ and the biopsies showed necrosis of the Cervix caused by my initial treatment…MRI mimiced a tumour. So hoping that you may too be showing changes due to your past treatment . The pain in my hip and leg was picked up on MRI as avascular necrosis of femoral head…again caused by radiotherapy
The treatment is alot harsher than we think it is…but amazing when it works
I have Everything crossed for you xx