Hello, I'm new here

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Hello everyone

I'm not sure what to say ect. I was diagnosed with cervical cancer back in September, things have been complex as scans showed further complications so I'm unable to undergo the radical hysterectomy originally planned and need to have chemoradiotherapy before any surgery can take place. I'm a single parent to 3 amazing young women who are absolutely my rock, I kinda feel guilty for all they are going through and I'm finding things difficult to get my head around. I thought I'd post as I know there is many in the same situation as myself and to have some support and offer support to others, even though we're all scared and anxious. I'm not sure what to expect going forward, I suppose no one really knows. Is anyone starting this battle too, or any words of advice id truly appreciate it.

Thanks for reading! TC tee 

  • Hi  and welcome to our group.

    I’m sorry you couldn’t have surgery and need chemoradiation-I was also originally told I would have a radical hysterectomy but then told it wasn’t possible as my stage was established at 2b where surgery isn’t an option. It’s a blow isn’t it when you think something’s happening and then the plan changes? 

    Like many of the ladies here, I went through chemoradiation so there is plenty support here for that aspect of treatment. I was interested to read that the plan for you is surgery afterwards as this is quite unusual. It can be more difficult to have surgery after pelvic radiation due to the damage it can cause to your organs. Often the chemoradiation is enough on its own to treat the cancer.

    Are you able to share a little more detail with us so we can try to support you better? You mentioned “further complications” so maybe some of us have experienced something similar? I’m presuming now that you have a stage for your cancer so if you can say what that is, it’s easier to connect with others who’ve had the same.

    I think as mums we all feel guilty about putting our children through this-I have 2 adult daughters and remember how difficult it was to tell them about my diagnosis. It was very difficult to hear the fear in their voices, and to be responsible for making them cry. I didn’t tell them until I had a treatment plan in place and was able to be very positive about how I thought it could go.

    A few of the ladies here are new and starting treatment so hopefully they will come along and say hello. If you could add some details to your profile it would let others see where you are in the process and save you repeating yourself. You can read others’ stories by clicking on their name.

    Please ask any questions you’d like to-we are all nervous about going into the unknown with treatment, but we can help support you through and those who have been through this before can hopefully reassure you.

    Sarah xx

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    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Sarah thank you for replying.

    They found extensive endometriosis on the scans and that my tumor was much larger than the LLETZ loop had found, to be honest it's constantly changing, I had to undergo further biopsies and an investigation under anesthetic and thats when they told me it's too large for radical hysterectomy and chemoradiotherapy is required, they said surgery could be done at a later date if need be. It's so confusing and overwhelming. They said it's stage 1b3  measuring at 4.4cm but has not spread and it's a mucinous adenocarcinoma of the cervix. My consultant said I have extensive scarring internally already from endometriosis. I don't know what to expect and I do feel very overwhelmed with all the information and that I'm getting confused, I see a new doctor who's taking over my care for the radiotherapy and chemotherapy, I need a pet CT scan first so hopefully I'll have a much better understanding soon. Seems to have taken forever to get to this stage, for a while it was a case of a radical hysterectomy was the way forwards, then it changed and I can't keep up with it all. 

    I hope this makes sense, I will update my profile, I'm working out how the site works lol.

    Thanks again for replying xx

  • Hi again  and thanks for the clarification. Yes, it totally makes sense-it’s all just a whirlwind at first, but things do calm down once you get started with treatment and can focus on that. The initial rounds of scans and appointments all seem to take ages when we are anxious to get started.

    Once you have the petscan, that should be the final piece of the jigsaw, and then the precise treatment can be planned. You are injected with a radioactive tracer and need to sit and wait for that to go round your body, then the scan itself doesn’t take too long. I found it very straightforward, and easier than an mri scan. I think I was at my appointment for about 1.5 hours, and most of that time was just sitting waiting for the tracer to go through my body,

    Your tumour is bigger than mine was-mine was 3.8cm- but the important thing is that so far there is no evidence of spread. Mine was adenocarcinoma, not mucinous adenocarcinoma, but the treatment will be the same.

    It’s a lot to get your head round when you’re first diagnosed, and pretty scary when you are hearing all these medical terms etc for the first time. Never be afraid to ask your consultant/nurse to explain anything you don’t understand-I had to ask my nurse to stop speaking one day and repeat things in a way I could understand. They are dealing with this every day, but for us it’s all new and they forget we don’t know the medical jargon! Also it can be hard to take everything in at appointments when there’s so much information being given to you. It’s a really good idea to have someone with you -another pair of ears is very useful! Or take a notebook with your questions written down so you can note their answers.  It is all very overwhelming, and I think we can all identify with that feeling.

    The chemoradiation is typically over a 5-6 week period, with radiotherapy on ever weekday, and chemotherapy once a week, followed by brachytherapy which is internal radiation. The chemotherapy is normally a drug called Cisplatin and is a low dose designed to help the radiotherapy be more effective, so it doesn’t make you lose your hair.

    You will need to sign a consent form for treatment where all sorts of potential side effects will be mentioned, but don’t assume you will get any or all of them. I was never sick, or even nauseous, but I did get very tired as treatment went on. From week 3 I did start to have some issues with diarrhoea and cystitis which can be very common with pelvic radiotherapy but was given creams and tablets. These side effects disappeared shortly after treatment ended, and the important thing is to make your team aware of anything so they can help. 

    The best advice I can give is to take one day at a time and not look too far ahead. Just focus on getting to the next appointment, and from there, the next one.

    If you need any help with navigating the site, please let me know. It can be a little difficult at first finding your way around but we soon get used to it! 

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you so much. I hope in the coming weeks I will have more clarity. I really appreciate your advice, one step at a time. Thank you for sharing your experiences, it really does help and sheds light on many factors with all this. 

    Thank you

    Tee x

  • Happy to help answer any questions  if I can, so ask away! My chemoradiation was 5 years ago but I still remember it very well. 

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi  

    Welcome to our group. I was diagnosed in September too. I found that once all the information came together and there was a plan of action I felt better. Hopefully you will know everything soon. The waiting is hard. It sounds like they are making sure they find the best way forward personally for you.

    I had a radical hysterectomy and I’m still trying to process everything! 

    I hope you are ok. We are here if you need to talkx

  • Hi  thank you. It's an awful lot to comprehend isn't it. I was booked for tomorrow to have the radical hysterectomy but due to my scan results I had to undergo an exploratory op last week and they decided it was too large and they said chemoradiotherapy was a better way forwards. 

    I hope you are recovering well from your surgery, it must be a lot to take in. I'm here if you need to talk too. Have you got any more treatments to go? X

  • Thank you. My lymph nodes were tested but came back clear and all cancer has been removed so I have been told I do not need further treatment. I am having my first face to face follow up on Friday as my surgeon has been away so he will go theough things in more detail. I will hopefully just have follow ups. I am also being seen by urology now as my bladder has been playing up since the op but it is very slowly improving in some ways so I hope it returns to normal one day! 

    I hope you don’t have to wait too much longer before starting treatmentx

  • That is fantastic news I'm so pleased for you. Hopefully they get the bladder better soon too. It sounds like you've been through a lot to get to this stage. What stage was your cancer at?

    Today I found I'm going in Monday for the pet CT scan. Getting more nervous for the treatments coming up, but I can't wait to hear the cancer is gone.  Xx 

  • I hope your pet scan goes well on Monday.

    i had my initial diagnosis at the start of September but not given any info until after my MRI. It felt like forever but I had the results and a meeting about 2 weeks later and was told it was 1B1 and a grade 3 type. The op was hard but now I’m 4 weeks past it I feel lots betterx