Can't get the 'c' word out of my head


Hi. I am new to this site and have been recommended to use this forum to speak with such lovely people to help and advise. Here is my story...I do hope you can help me....

I can't seem to get the 'c' word out of my head. Guess I'm looking for that bit of reassurance from others .....It has been a whirlwind of a few months...I was diagnosed with cervical cancer on 29 Jan 2015. Had my first LLETZ two weeks later, then was told they weren't sure they had removed all the tumour so had to have a second LLETZ to find out if the cancer was bigger and/or if my lymph nodes needed removing. I had my follow up 24 April and was told that there was no more cancer but there were high grade CGIN cells, but they have removed them all too and I didn't need my lymph nodes removing. I was then just told I was being discharged and to wait 6 months for my next colposcopy. This wait is going to drag! I was apparently 'lucky' that they caught the cancer early. All I seem to do is continually think about cancer and wish I could have a spare moment of not thinking about it.

My head is full of questions...Will it return? What if they've missed some cells? How quickly does the cancer spread? Are cancer cells grouped in clumps or are they sporadic? I have so many questions that are taking over my brain and all I want to do is make it stop...I take it these feelings are 'normal' but can anyone shed any light as to how I deal with things and how to move forward.

Does anyone else have feelings of 'is this real' has happened so quickly and because I have not had any symptoms of such, or anything visible to see, I am struggling to come to terms with the fact that I had cancer...and it could come back.

I am also suffereing from endometriosis and waiting for surgery to save my only ovary. If this is successful, then I will hopefully, be going for IVF but my age is going against me (38 in a couple of months). Such a long rollercoaster ride coming up and all I can think about I want a hysterectomy to get rid of any chances of the cancer returning..but my chances of having a baby will be gone...if the cancer has returned when they operate on my ovary, there is a high chance of the cancer spreading.  Is anyone else had similar experiences that you could share how you deal with things please.

Thank you for letting me rant...I don't know who else to turn to xx Cathryn xx

Hi Cathryn :-)

Oh bless you sweetheart, it really isn't helping that you have to deal with the whole ovary and IVF thing as well as this. So, calm down. Cervical cancer is slow, so if your team are happy to leave it for six months then they know what they are dealing with. They are not going to risk your life just because of NHS cuts and a new government (oops - politics slipping in a bit there ;-)

I expect you need to comparmentalise a bit. Put the 'cancer' thing here, the ovary thing there and the IVF thing in the future. I can't help you with the ovary thing or the IVF thing but with regard to the cancer thing I might be able to help a little bit. We all grow up in fear of cancer because for most of our lives it has been a big, bad and mostly unknown quantity, but that is because we are looking at cancer as a whole and we are doing so from outside. Certainly there are some very terrifying diseases withing the 'cancer' family and I think it's because we lump them all together that we find them so scary. But cervical cancer isn't really so scary is it, I mean you've had it and it's gone :-) Yes, you were lucky that it was caught early, and you are still lucky that you don't need treatment that will damage your ovary or your womb. So try to skip in a happy way and keep your fingers crossed that you will continue to be lucky and that you'll be a mum before you turn 40 :-)

Keep being lucky :-)


Thank you Tivoli for your kind winds. You have put some things into perspective for me. I will do my best to compartmenatlise and I have decided to go and visit my local MacMillan centre in the morning too. I know that time is a great healer and I know I have to be realistic as well as optomistic so will just take each day at a time. Sorry for having a wobble....I am sure to have some more, but I will do my best to stay calm and not fret too much xx

Hi Cathryn

I'm so sorry you have had to deal with all this. Firstly - slow down!  Your head is running away with you.  We have all been there with the multitude of questions you keep thinking of.   I know exactly what it is like constantly thinking about that word "Cancer".  I am 37 and had stage 1a1 exactly 12 months ago and underwent a radical hysterectomy to make sure they had got it all following the Lletz.  They had and the results of the hysterectomy were absolutely clear.  There were no further cancerous cells in my cervix or anywhere else.  I consider myself extremely lucky.  However, it does not stop you worrying.  The only way I can try to function is by reminding myself that there were no cancerous cells found after the Lletz, the hysterectomy was done to be absolutely sure.  I try to tell myself that I am under constant review to make sure things continue to be ok and that if the surgeon or consultants had any doubts at all they would review me every couple of months.  The fact that they are saying to you go back in 6 months is good - they are not expecting anything to change.  It is not easy hun but please just take each day at a time.  I am still doing that myself and I still do have dark days where my own shadow frightens me.  I can't help you with the IVF questions I'm afraid but your Dr's will be able to guide you I'm sure.  Do you have a cancer nurse?  If you do ring her, they are really really good and will help you with any questions - believe me I have asked the strangest of questions!.  I hope you are doing ok but please feel free to ask any questions.  I will keep checking in to see how you are doing.  Hugs to you. xx

Thank you Mymyggie...looks like we are the same age with the same can be my cancer buddy! I visited my local Macmillan centre yesterday and met with such a lovey nurse who answered a lot of questions. I asked about if the cancer could be elsewhere in my cervix that could have been missed and she explained things in very simple english. Imagine a fire, the centre of the fire....(the start of the cancer)...firefighters will concentrate on putting out the fire at the source. They will then check surounding rooms (imagine the tissues around the centre of your cancer are the surrounding rooms). If there are no more little fires in the surrounding rooms, then the fire is contained...the same applies for cancer cells. If the 'fire' is contained, the firefighters won't randomly check another room which is on the other side of the building...this means that as the cancer was contained, and the area around it was checked and was clear, then there is no requirement for the surgeons to check elsewhere in the cervix. It put my mind at ease knowing this. I also had a call from the IVF team yesterdat and I am having an urgent scan tomorrow to see how bad the endometriosis is...fingers crossed eh?! Feel a bit better now I have made contact with Macmillan and I have booked on 3 mindfulness sessions to help with managing my issues, anxieties and fears and learning how to relax. Positive steps forward and in only 24hrs I am starting to feel more upbeat about things. It's amazing how things can change when you get the right help. xx

Hi Cathryn.  So glad you are feeling a little more re-assured having spoken to Macmillan, they really are wonderful people.  Remember that they are always there should you have a wobbly day.  It is 12 months exactly to the day since my surgery and I admit it is playing on my mind at the moment but being able to contact people like you and have Macmillan there does seem to help.  We all have wobbly days now and then, gradually over time they become less and less but it is an imense help to be able to talk over your worries.  How has you scan gone today?  Hope you are okay.  xxx

Hiya. Scan went ok. Bit sore but bearable. Was told that my little remaining ovary has recently ovulated and there were folicles, which is really reassuring for if/when the IVF starts. Gotta see consultant for full results of this and a recent MRI scan on 1 June. Yet more waiting but guess I need to get used to this now! Hope you're donig ok too? xx

Love that fire analogy! 

Hope you get all the news you wish for.