Starting radiotherapy soon - nervous

Cervical cancer treatment
1

Hello,

I've been lurking for a while reading posts, and they have been very helpful to me so far. I decided I would post because it's good to share experiences.

I am 29 and am getting married in February next year. I last had a smear in 2012 and was all clear. In May I started bleeding a little and went to get a smear, they said they couldn't do one because there was a growth. Very scary, I cried as soon as I was out of the doctors. I was soon given a hospital appointment but not before I did a triathlon that I had been training for for many months - I almost didn't do it, but felt ok and really wanted to. It went well and I'm glad I did it! 

I had a biopsy at the hospital and they told me it was very unlikely to be cancer due to my age. Then went on holiday with my family while I waited for the results. When I came back they told me it was cancer, and I cried a lot... I went for an MRI (I was petrified because I hate needles and I fainted after the cannular), but found the MRI fine. 

I was diagnosed with stage 1B1 adenocarcinoma - which means the cancer had started at the top of the cervix- and that was why it probably hadn't been seen in 2012. They also told me it was high grade - so it grows rapidly. After that they booked me in for surgery 2 weeks later - a radical hysterectomy. Luckily I have never been broody and neither has my fiance, so we weren't too worried about the fertility issue, I was mainly worried about it having spread to the lymph nodes, but luckily it hadn't. After an 8 hour surgery there was quite a long recovery time, it was hard and quite upsetting at times, especially when I'd done a triathlon a few weeks before, and here I was unable to get out of bed. 

The surgery went ok, but the tumour was bigger than they had expected - bigger than 4cm, so the cancer was re-staged to be 2A2, I think if they had known that before they would have gone straight to radiotherapy without the surgery.

That was 6 weeks ago and I feel a lot better now, almost ready for a jog!

Then on monday they told me I need chemoradiotherapy. Such a blow. Yesterday I had my planning appointment - ct and pet scans. Stressful day but not too bad. 

Treatment starts in 3 weeks - 5 weeks of radiotherapy mon-fri, and chemo once a week, then brachytherapy. I'm scared of all the side effects they are telling me about. They moved my ovaries during surgery but they still said they will not be functional afterwards - so HRT forever I guess... also scared of bowel/bladder issues and not being able to do a triathlon again. Also scared of not having being able to have a normal sex life.

Any similar experiences people have or any advice would be appreciated :)

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hello minty I have not long finished my treatment for stage 2b 5 wks radio and 5 chemo and 3 brachytherapy the treatment was not as bad as I Thourt felt a little bit sick from chemo and a little tired from radio but you get anti sickness tablets for that I don't really have any side affects from my treatment but did have a few bowel problems during treatment apart from hot flushes and mood swings thanks to early menopause I have been fine good luck am sure you will be fine xxx

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Hello,

i can relate to the radical hysterectomy & thinking it was the only treatment I needed. I had also completed a long distance run shortly before, so it's a knock when you can't even walk properly. I'm four weeks post op so still struggling but getting out more. I had the call I didn't expect last week to tell me, I need chemo radiation too. It took two days to comprehend it. I still have a catheter, which is just frustrating, but i am building myself up on super foods, and good vitamins.

my ovaries were moved too, and I have been told they won't be affected by chemo or radio x feel free to pm me.

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Hi minty

so sorry to hear about you needing additional treatment that must be hard after everything so far.  I am finishing up week for of the chemo and radio and to be honest it hasnt been anywhere near as bad as I thought.

i have been tired and a bit sick but other than that fine so far (fingers crossed)

all the best for your treatment and feel free to ask me anything.

i love my fitness and although I have been taking it a bit easy I have been able to keep doing things.

 

kimmy 

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Hi, I have advanced cancer and I have gone through chemo and radiotherapy which I am still having then I will be having internal radiotherapy too in September. I know exactly how you feel being scared, worried etc but the way you have to look at it is if it is going to save your life and allow you to marry your prince it is worth it! Don't get me wrong it will kick your arse you will feel so tired and unfortunately you MAY have issues not everyone has the same side effects as each person is different. Due to my stage of cancer I too have gone through the menopause but I can not have surgery. As the chemo I had at 1st was a mixture of high dose due to you diagnosis I lost all my hair, eyelashes and eyebrows but they're coming back! Slowly but they are.....you maybe lucky and not have this! I have cried I have screamed I have taken it out on people who don't deserve it and I feel guilty but the end is near for me....I don't think I will ever be free of cancer but I sure as hell won't allow it to rule my life!!! 

i came for my chemo yesterday and have been admitted to hospital with an infection and a temp - this is my 4th time being admitted and I hate it but I know I am in the best place as I need to best this. I am 28 and I know how much the tiredness and pain can affect you....I am off sick from work and have been for the last 7 months and it's killing me! I can't walk long distances the corner shop is a struggle, don't get me started on cleaning the house or making the bed my mum has to come do all this for me - luckily she doesn't mind but it's not to say that I ant her to.

The bowl and bladder issues I also suffer with but it is manageable it's again a pain in the arse and I get so frustrated it's unreal but I just have to think it's not for long!

i know it is really hard and it will be tiring being at the hospital every day but it does go quickly and the staff are lovely! Re having sex after all this is over you do get some plastic dialators (you will be shown these near the end of your radiotherapy) they're a it like a dildo but look nothing like them (sorry) and your advised to use them for a year to keep the vigina open but having sex is not out of the question I suppose it's a matter of when you feel ready.

i hope everything goes ok for you and you can always private message me if you have any questions I don't mind xx

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Thanks for sharing Cvs it really helps to hear it was all reasonably ok :) xxx

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Thanks Sylvia, nice to know someone who will be going through the same thing as me around the same time (though wish neither of us had to!)

It's so hard to digest that you need more treatment when you're still recovering. It must have been even harder at 4 weeks. I found it hard day-to-day at that stage because I could see any improvements - but if you look week-to-week it's easier to see progress.

Good luck with the recovery x

 

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Hi Kimmy, thanks for your message. Good to know it hasn't been too bad for you. Good luck with the remaining treatment and increasing the fitness even more :) x

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Hey Carmel, thanks for sharing, sounds like you have been having some nightmares but still manageing to keep positive which is fantastic!

Sorry to hear you're in hospital, I hope you can go home soon. Must be rubbish not to be working for so long- I got frustrated after only 6 weeks! I always grumble about having to go to work, but it's worse being at home all the time.

Thanks for the dilator advice - I had heard about them but didn't know if they are given to everyone or only if you are affected.

Keep up the positive vibes- you're an inspiration! 

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Hi Minty,

Yes it's an awful shock when you are told you have to have chemorads after such massive surgery but I can honestly say that the chemo-rads aren't nearly as bad as we think they are before we've tried them. Actually they are a hell of a lot easier to deal with than the surgery. The triple whammy of surgery, chemo therapy and radiotherapy will whup this so hard it'll wish it had never met you. Yes there is a list of potential side effects but very many of us have a really easy ride so it's probably best not to dwell on them until such time as you actually notice one. just keep the list in your head as things to keep an eye open for and to tell the medical team the moment you notice anything odd.

Be lucky :-)
Tivoli

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Hi Tivoli, 

Thanks for the positive words, hoping for an easy ride too :)

Feel a lot better now about the whole thing!

Minty

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Hi minty,  thank you for sharing.  It really means a lot because I am going through a very similar thing, I'm married and have just turned 30 years old and I was diagnosed with 1B1 adenocarcinoma 4 weeks ago, and it was three blows in one having to face the 3 issues of cancer + infertility + menopause all at once.  I was initially offered both surgery and chemoradio but after a PET scan the other week they said it had a small amount of spread to the nearby lymph nodes so chemoradiotherapy is the best treatment for me. 

 

I've just started the accelerated hormone fertility injections in the hope that they can collect enough of my eggs before the radiotherapy treatment starts next monday.   I'm in a smiliar place to you having to face the radiotherapy 5 days a week with the brachytherapy and once a week chemo. 

 

As far as I know there are not any support groups in Exeter and my closest one is 1.5hrs away so if you fancied a radio-chemo buddy let me know you are welcome to message me.

 

I also had similar worries and concerns re the side effects and the sex issue so thankyou everyone for your replies that was really helpful and am really grateful for this support as now feel less alone in this process. xxx