Reoccurrence?

I had been suffering with spotting and bleeding during intercourse since August 2022. Many trips to the doctors and was given different contraception as they kept saying it was hormonal bleeding. I tried the pill, the coil and the implant and the bleeding continued. I begged them for tests but was refused.
March 2023 my smear was due, again they refused to do the smear due to bleeding and said the lab would reject the sample.

I booked myself into a sexual health clinic and sat there begging them to do a smear. The lovely nurse there agreed without hesitation.
As soon as she looked at my cervix she said she was referring me under the 2WW.
Smear results were back in 2 days, HPV positive with severe dysplasia.

I had my colposcopy and biopsies taken. Nothing was mentioned except I had contact bleeding.
3 weeks later I had a phone call to tell me the biopsies were back and I had invasive carcinoma.
Went through all the usual tests, ct, mri, pet scan etc. was staged as 1b2 and offered a radical hysterectomy which I had the 9th August.
At 36years old the menopause hit me like a train :pensive:
Recovered really well from the hysterectomy and got back to work and feeling ‘normal’ about 3 weeks after surgery.

My oncologist said no further treatment which was the best outcome I could have asked for. He even decided no further scans needed as we was confident all the cancer had gone.

Almost 4 weeks ago I started spotted after intercourse. I contacted my CNS who said it’s normal and would be a bit of irritation from IC.
The spotting continued and I started having severe back, groin and leg pain. Went to A&e who said it was kidney stones and wait for a ct scan. (Got that appointment Friday almost 4 weeks after presenting at a&e)

Pain was severe rang CNS again and demanded an appointment with my oncologist.
Saw him on Tuesday and he can see amass at my vaginal vault and booked me in for EUA and biopsies this Wednesday coming.
So from RH to now (16 weeks?) it looks like it’s back again :pensive:

Has anyone had a reoccurrence this fast? What will be the treatment this time? I feel like I’ve been let down, fobbed off over and over again.

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Hi @Shell1,

I’m so sorry to hear everything you have been through. You should not have had to fight to get to your CC diagnosis but it is a good job you recognised the signs and ensured you got your smear.
I’m sorry to hear you are experiencing some issues now. Hopefully you will get your results soon. Sorry I’m not sure what the treatment would be if it is a recurrence, hopefully others can advise you. I just wanted to send you hugs and best wishes. I hope you get to the bottom of it soonx

Sorry to hear you have to go through this all over again, cancer bloody sucks!!
I’m guessing the next treatment would be chemo/ radiation, seeing as you only had surgery first.
My tumour was too big for surgery so I automatically had to have chemo radiation.
Hopefully this will get rid of it once and for all!
Feel free to message if you have any questions
xx

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@Shell1

Can tell how annoyed and upset via your message. Unsurprising given the experience you’ve had. I swear, if we didn’t advocate hard for ourselves.….

It’s good they are doing a biopsy to confirm if it is cancer or if it scar tissue or Benign. I’d be very shocked if it was a reoccurrence. I’d be more thinking if they made the wrong call with staging or something

Hopefully another lady might be able to shed more insight as I couldn’t have surgery.

Decent news is that you still have the treatment options of chemotherapy/radiotherapy to get rid cancer. So plenty more available to treat cancer with.

I am sorry that you are back here again. Cancer really is the gift that keeps giving

Mena

Thank you for taking the time to reply.
I’ve saw in my NHS app a letter from my consultant to my gp that says ‘ I’m afraid I’m really concerned the Michelle has a reoccurrence of cervical cancer and there is a mass at the vaginal vault’

How on earth did it come back so quickly if it has?
I’ve not had any internals, scans or anything since my surgery as he was adamant that everything was removed.
I feel like I’ve been fobbed off over and over again :pensive:

I think it might be more likely that cells remained after surgery and have grown again. It’s still called recurrence if that’s what happened-it happened to me about 6 months after my NED result.

I was warned cells could remain which could not be picked up on scans, and that was the case. Mine was picked up on a visual check and I had no symptoms, so I was lucky it was spotted.

I’m surprised you had no check ups after surgery. My treatment originally was chemoradiation, so I had a check up at 6 weeks following treatment and then 3 monthly. I couldn’t have any further radiation for my recurrence as you can’t have it twice to the same area, but you haven’t had this so it could be the plan if you have a recurrence. I had an EUA for a biopsy, then scans to confirm it was back.

@Lilypingu

Well I’ve learned something today. Naively, I believed surgery would get everything including microcells that aren’t visible. Seems silly now because having a Hysterectomy doesn’t stop you developing CC.

@Shell1

Sounds like your Oncologist is pretty sure doesn’t it. Honestly, I didn’t think it could reoccur that quickly. Definitely be a question I’d be asking my oncologist.

Hope you get some answers. Please let us know how it goes

There’s always a chance with surgery or chemorads that it’s not all gone, even with an NED result like me. Anything left that can’t be seen can grow again-it’s unfortunately just the way it is with cancer.

Even my later surgery came with the same warning despite having very clear margins on what was removed-technically all the cancer was successfully taken out, but they cannot give a 100% guarantee so there was still a”but” when I got my pathology results.

I’ve never had a consultant or surgeon who used words like “cancer free” or “cured” for precisely that reason.

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Hey @Lilypingu I am sorry to hear your cancer calls cam eback. So since you already had chemo radiation what did your doctors suggest they do this time?

I had massive sugery called a total pelvic exenteration.

I lost my my bladder, colon, vagina, womb, and all of my reproductive system, so I have a a colostomy and urostomy now. But at at help I am still alive!

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hey @Lilypingu
Brave woman you!!!

Yes being alive and being mentally positive and strong as you are is the most important. There are so many of us here with such brave stories to share and inspire each other.

@Lilypingu
Hi there. I’m having a total pelvic exenteration in Houston, Texas in the next month or so. I made it through cervical cancer treatment 24 years ago. However, the brachytherapy (internal radiation) have left me with debilitating long term side effects. My bladder, colon and rectum took the hardest hits and medication is no longer working. I’m a tad anxious. How are you doing and any tips you can give or share would be great.

Hi @mistyhowell74

I will send you a message. This is a very public forum so I’m not comfortable in sharing things which can be seen by anyone.

I can help, and I have a private support group which you would be welcome to join. There is very little information about this surgery on this forum and it is very quiet with little activity.

I think most women establish their own support networks which are off the forum and are much better with lots of support and advice. I have a number of ladies in the states you can connect with.

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If you don’t mind me asking, what stage were you 24 yrs ago?