I thought it might be a good idea to post a bit about my story so far. I have stage 1B1 squamous cell cervical cancer with lymph involvement. I was diagnosed in October 2016, following an abnormal cervical screening result (high grade changes/severe dyskaryosis).
I started experiencing symptoms of constant bleeding, lower back pain and urinary frequency at the start of August (retrospectively, the urinary frequency and lower back pain may have started earlier but I put it down to drinking a lot of water and my career in health care respectively). I put off going to the GP for about 5 weeks, but after two normal periods and no change in symptoms I went to see my GP for an overdue cervical screening (smear test).
Following the results I had a colposcopy, where an area of abnormalities was removed and sent off for testing (Large loop excision of the transformation zone (Lletz)). This was done under local anaesthetic. After about two weeks I was asked to go back in and at this point I was given the news that I had cervical cancer, that the tumour was incompletely excised and poorly differentiated which basically means that I had a grade 3 tumour and part of it was still there. At this stage that was all they could really tell me.
Following that, I had a CT and MRI scan, before going back for a further meeting with my consultant and it was great news! He told me that I had stage 1A2 CC and that the scans showed no visible tumour at all and although there was a couple of slightly enlarged lymph nodes it was probably just because of the LLETZ procedure. I was advised that because of the histology report there must still be some microscopic cancer cells present but that they were so small they weren’t showing on the scan so I would need to go for an internal MRI scan and that whilst I would need more treatment it would be surgical and they felt that a fertility sparing option would be best given my age. As such, I had to be referred to The Royal Marsden (a specialist cancer hospital in London).
Following my internal MRI scan I met with my new consultant who specialises in a procedure called a radical trachelectomy, where rather than remove the uterus and cervix as they do in a hysterectomy, they remove the cervix only and insert a stitch where that was (essentially an artificial cervix). This means that it is possible to get pregnant (although slightly harder) and possible to carry a pregnancy (again harder and with greater risk of miscarriage and preterm birth). Any pregnancy following this is considered high risk so would involve increased monitoring and delivery can only be by caesarean section. The consultant told me that I actually had stage 1B1 CC, and that although the tumour was relatively small it had such poor histological features and this meant that a radical trachelectomy was the best option (rather than the less invasive option of a cone biopsy). I was booked in for an Examination Under Anaesthetic (EUA) which involved having an internal examination, a sigmoidoscopy, cystoscopy and hysteroscopy… Ouch, I’m super glad I was asleep! Nothing suspicious was found so they went ahead with the radical trachelectomy and lymph node dissection on 6th January 2017. It was the most physically painful experience of my life to date and I seriously underestimated how debilitating it would be. I was booked in for 3 nights but I recovered well and was determined to get up and moving so they let me go the following afternoon.
Three weeks later I was given the news that although the tumour had been completely excised 2 of the 28 lymph nodes had cancer cells present. So, I was advised that I would need chemotherapy and radiotherapy in order to kill off any remaining cancer cells. Since then I have been referred back to Southampton, where the oncologist suggested the best treatment would be Cisplatin chemotherapy in conjunction with Intensity Modulated Radiotherapy Treatment (IMRT). Unfortunately, at this point in the story they don’t have the facilities to treat cervical cancer with this type of radiotherapy, so the doctor suggested I went back to The Royal Marsden or to the Norfolk and Norwich (as my family home is in Norfolk).
So, I’m back in Norfolk now awaiting an appointment with my new consultant to finalise a treatment plan. I have had an MRI and PET-CT scan both of which look fine, which is great news. The chemoradiation is really just an insurance policy at this stage, it’s possible that I am completely cancer free, but because of the metastases the assumption is that there are some microscopic cancer cells floating around somewhere which need treating before they have the chance to spread anywhere else!
Here are some links to some useful resources which explain some of the technical terms used in my story so far:
- Explanation of cervical screening results and actions: https://www.jostrust.org.uk/about-cervical-cancer/cervical-screening-smear-test-and-abnormal-cells/abnormal-cervical-screening-results/results-cervical-screening-test
- Symptoms of CC: https://www.jostrust.org.uk/about-cervical-cancer/cervical-cancer/symptoms
- Lletz: https://www.jostrust.org.uk/about-cervical-cancer/cervical-cancer/treatments/surgery/lletz
- Cone biopsy: https://www.jostrust.org.uk/about-cervical-cancer/cervical-cancer/treatments/surgery/cone-biopsy
- Radical trachelectomy: https://www.jostrust.org.uk/about-cervical-cancer/cervical-cancer/treatments/surgery/trachelectomy
- Lymphandectomy/lymph node disesction: https://www.jostrust.org.uk/about-cervical-cancer/cervical-cancer/treatments/surgery-cervical-cancer/lymphadenectomylymph-node
- Hysterectomy: https://www.jostrust.org.uk/about-cervical-cancer/cervical-cancer/treatments/surgery/hysterectomy
- Names, grades and stages of CC: https://www.jostrust.org.uk/about-cervical-cancer/cervical-cancer/types-and-stages-cervical-cancer
- Radiotherapy: http://www.macmillan.org.uk/information-and-support/treating/radiotherapy
- IMRT: http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/radiotherapy/external/intensity-modulated-radiotherapy-imrt
- Chemotherapy: http://www.macmillan.org.uk/information-and-support/treating/chemotherapy