Recently diagnosed and very scared

Recently diagnosed with cervical cancer
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I was diagnosed with cervical cancer 1 week ago, I was very angry at first as I had a smear in December with a internal scan by a gynaecologist who seems to of missed  the signs of my cancer! I had CIN3 4 years ago which was removed and told to return in 2 years, within them two years I knew something was wrong and requested smear tests to which I was refused as I wasn't due one and the lab people would just discard it!! It is now at a stage 4. I have read a few posts by people but haven't seen any for stage 4? I am absolutely terrified, I am a single mother with four young children! I start chemo on the 5th for 3 session then 7 weeks of radiotherapy

i have a great support network o family and friends but they don't understand I know they are going through it too but would like some advice off people who are going through it too 

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Hi Laura, 

First of all I am so sorry that you've had this diagnosis and find yourself in this position. I am not surprised that you are absolutely terrified and you are perfectly justified in being angry, too!

Secondly, I want to reassure you about the relative absence of women on the site with stage 4 cervical cancer. It's actually not so much for the reason that you would understandably think of, but much more because the overwhelming majority of women with cervical cancer are diagnosed and successfully treated at a much earlier stage these days, so many women are cured before the cancer has the opportunity to progress to an advanced stage. 

It's great that you have such a strong support network, and even though you're right that they don't understand what it's like for you, in the end I found it still helped to spend time with people who loved me and wanted me to be ok. As you say though, it can really help to have contact with people who do know what it's like to be diagnosed with cancer and have also experienced all the resulting emotions, so please do keep coming to the forum as much as you feel you want to. Jo's also runs support groups around the country, so it's worth finding out if there's one near you. Also, Macmillan often run support groups and can offer you other types of support as well, so it's worth ringing your local Macmillan Centre (or popping in - they are usually run by such lovely people) and finding out what they can offer you. 

Laura, I would imagine you're still in shock to some extent. This is a massive thing to take on board, so don't be surprised if you experience a complete roller coaster of emotions. You need to take very special care of yourself emotionally and take all the support that is offered. I am absolutely terrible at asking for help and am one of those people who always thinks I should be able to do everything on my own, but when I got diagnosed I realised I couldn't do this one on my own, so I made a conscious decision to just take the help. If you accept the fact that people actually really want to do something to help, it makes it easier to accept the help and support that is there. It does make a big difference. 

It's good that you've already got a date for the start of your treatment. You'll probably feel a bit more 'pro-active' once your treatment starts, as people often feel a bit more secure once they feel something practical is being done. Are you having external radiotherapy or internal or both? Have you been told what kind of tumour you have and where it has spread to? 

I know you must be very frightened - I feel for you so much - but I want you to know that we're here to support you on this site, whether you need advice or are feeling distressed or just need a rant! 

Take very special care, Laura. 

Much love, 

Annabel. x

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Hi Laura,

I just also want to to say I'm so sorry about your diagnosis.  As Annabel said, this site is brilliant for support and information.  I don't know what I'd have done with out it.

I'm sending you a big hug and we are all here for you anytime you need to chat.

Lots of love, Tess xx

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Hi annabel and Tess thank you so much for your replies, you are right Annabel I am still in shock I suspect I feel like its happening to somebody else like I’m kind of sticking my head in the sand. Normally I’m one for wanting to the in’s and outs of a card backside but this I am scared to ask as each time I go the hospital it’s worse than I originally thought!
I have seen a few woman on here who have had smears and it has came back normal! It confuses me as to what’s going on they can’t all be wrong?? Can they?
I have four beautiful children 2 girls 2 boys and as you can imagine my fears for my girls? my eldest is getting the hpv vaccine in her school next year but I have been key down so much I wander is that enough?
I have found that I’m mostly scared of asking the survival rate do you think this is normal? And I have also been advised by a friend to take apricot kernal capsules as this helps the tumour to shrink as well as chemo and radiotherapy. I am willing to try anything for my kids!

Thanks again ladies you are both right it’s good to talk to other people who are going through the same thing.

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Hi Laura, 

Yes, it does feel like it's happening to someone else - I remember exactly that feeling - when I was telling people that I had cancer, I usually ended up feeling sorry for them, because they were so upset about it. It didn't feel quite real to me!

Unfortunately smears are not 100% accurate and don't always pick up abnormalities, especially for the kind of tumour that I had (adenocarcinoma), although there is now a new 'brush' type of smear which is more accurate more of the time. Having said that, I can't quite get my head round the idea that you had a smear and internal ultrasound only six months ago and that both of those things missed a cancer that is now stage 4. I would definitely be asking them how on earth that happened!

I completely understand your fears over your children. I had exactly the same fears about my daughter - when I got diagnosed, she was the first thing I thought about. She will be having the HPV vaccine when she is old enough and all I can do beyond that is educate her about regular testing and detecting symptoms. Because of what I've been through, I imagine she will grow up to be pretty vigilant about her body, which ultimately is a good thing. There is no evidence that there is any greater risk of cervical cancer because of genetic links (such as one's mother having had it), so don't worry about that side of things. 

It's perfectly normal not to want to know about things like survival rates, and actually, it won't be particularly helpful to you to find out, because everybody's clinical situation is different and figures like survival rates are built on very raw data, so don't really mean anything on their own. Generally they are used by medical scientists alongside other data, so it's not helpful or meaningful to look at them in isolation. It's possible that you'll want to know more as you go on, but if that's the case, then it's best to ask your cancer nurse or your consultant or your oncologist, so that they can answer those questions specifically about you, rather than in a general sense. 

As for the apricot kernal capsules, all I would say is just be careful about that kind of thing. I am not 'anti' any kind of alternative medicine and I do believe it has a place, most often in a complementary sense, but the belief that seems to be common that if something is natural it can't do any harm to take it, is simply not true. Just like with conventional medicine, sometimes various things don't mix well when taken at the same time, so it's really best to run it past your oncologist before you take any kind of alternative treatment - obviously the last thing you want to do is be taking something in all innocence that you think will help, only to find out later on that it could inhibit the effectiveness of your chemotherapy! I completely understand the feeling of being willing to try anything for the sake of your children - overwhelmingly the best thing you can possibly do for them right now is follow the advice of your oncologist to the letter.

Keep coming back and let us know how you're doing. 

With much love, 

Annabel. x

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Hi Annabel

To be honest with you i agree with you over the apricot kernals, i only mentioned them to my dad and he was right on it ordering them in boxes, bless him he is devastated as is a lot of my family and it is quite upsetting to see them like this sometimes feel like i have to comfort them which in all honesty takes my mind off things.

I have my cancer specialist tomorrow to go over everything again as last wednesday they just told me everything and he said its best to tell me again, think i had the look on my face that i had gone passed listening my sister said i looked like i was going to faint and i know i didnt take it all in.

my sister in-laws mum who is suffering with lung cancer has very kindly gave me her head scarves so i have been practising what i will look like, i may start to wear them this week as to get my two younger children ready for what i am going to look like.

i have told my two elder children but not the youngest who are 8 and 9. dont quite know where to start.

 

laura

xx

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Hi,

It is very difficult for everyone isn't it - I think a cancer diagnosis is like someone throwing a grenade into the middle of your family - like you say, it is hard to see other people upset and they are bound to be because they love you. As your dad has shown, they will probably do pretty much anything to try and ensure your health and I imagine they'll be feeling pretty useless right now. As time goes on and you feel a bit less in shock you might be able to put them to very good practical use, which will help you because it will take some pressure off you, but will also help them because they will want to be useful. 

Telling children is hard. My daughter is 9 years old and I can honestly say that telling her I had cancer was the hardest thing I'd ever had to do in my life. The temptation to try and sugarcoat things and to promise I was going to be ok was very great, but I managed not to do that because I didn't think it would be fair - when I got diagnosed, they told me straight that they wouldn't know the extent of the cancer until they'd done the surgery, so I didn't think it would be fair for me to make promises to my daughter that I didn't know if I'd be able to keep. This doesn't mean I was bleak with her, in fact I was very upbeat and told her the doctors were going to do their best and that they all wanted me to be ok, and personally I think it was better for her in the long run for me to be as honest as possible with her. The uncertainty was very difficult for her - just as it is for people diagnosed with cancer, to be faced with the uncertainties of life - but she has gradually come to terms with it and I am glad that I dealt with it in the way that I did. Having said this, every family is different and every child is different, so it's whatever you think is best. Macmillan publish very good material on how to tell children about a cancer diagnosis. 

It's great that you're seeing your specialist tomorrow - it does tend to go in one ear and out the other once you've heard the word 'cancer', doesn't it! Things will be clearer for you once you've been able to go over everything again. Bear in mind that you may not lose your hair - it doesn't happen with every form of chemotherapy - and actually a lot of women who have chemotherapy for cervical cancer don't lose their hair. If I remember correctly, Cisplatin is the chemotehrapy drug for cervical cancer which is very widely used but doesn't usually result in hair loss, although I have heard that the combination of it with radiotherapy can turn your hair an odd colour! There are other women here who will now more about that than I do though. 

Sending you big hugs, Laura. Let us know how the meeting goes tomorrow. 

Much love, Annabel. x