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
Recovered really well from the hysterectomy and got back to work and feeling ānormalā 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 itās 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 itās back again
Has anyone had a reoccurrence this fast? What will be the treatment this time? I feel like Iāve been let down, fobbed off over and over again.
Iām 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.
Iām sorry to hear you are experiencing some issues now. Hopefully you will get your results soon. Sorry Iām 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!!
Iām 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
Can tell how annoyed and upset via your message. Unsurprising given the experience youāve had. I swear, if we didnāt advocate hard for ourselves.ā¦.
Itās good they are doing a biopsy to confirm if it is cancer or if it scar tissue or Benign. Iād be very shocked if it was a reoccurrence. Iād 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 couldnāt 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
Thank you for taking the time to reply.
Iāve saw in my NHS app a letter from my consultant to my gp that says ā Iām afraid Iām really concerned the Michelle has a reoccurrence of cervical cancer and there is a mass at the vaginal vaultā
How on earth did it come back so quickly if it has?
Iāve not had any internals, scans or anything since my surgery as he was adamant that everything was removed.
I feel like Iāve been fobbed off over and over again
I think it might be more likely that cells remained after surgery and have grown again. Itās still called recurrence if thatās 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.
Iām 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 couldnāt have any further radiation for my recurrence as you canāt have it twice to the same area, but you havenāt 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.
Well Iāve learned something today. Naively, I believed surgery would get everything including microcells that arenāt visible. Seems silly now because having a Hysterectomy doesnāt stop you developing CC.
Sounds like your Oncologist is pretty sure doesnāt it. Honestly, I didnāt think it could reoccur that quickly. Definitely be a question Iād be asking my oncologist.
Hope you get some answers. Please let us know how it goes
Thereās always a chance with surgery or chemorads that itās not all gone, even with an NED result like me. Anything left that canāt be seen can grow again-itās 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 aābutā when I got my pathology results.
Iāve never had a consultant or surgeon who used words like ācancer freeā or ācuredā for precisely that reason.
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!
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. Iām 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. Iām a tad anxious. How are you doing and any tips you can give or share would be great.
I will send you a message. This is a very public forum so Iām 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.
