Radio/chemo - advice and experience?

Hi ladies,

I'm really hoping someone out there can help me with a treatment related question...

I was diagnosed a few weeks ago and after all the tests and scans it turns out that while I'm a 1b and could have the fertility saving tracelectomy, my cancer isnt playing fair and cause of "high risk factors" is very likely to come back.  I had been praying that we had caught it early enough for the tracelectomy to be available for treatment but I guess it just wasnt meant to be.  i'm now due to start chemo/radio treatment in a few weeks with a couple of brachytherapy sessions afterwards. Dr's seem confident we can beat this so I guess Im comfortable with this plan if it means saving my life but still devastated that I won't be able to ever be pregnant and give birth to my own baby.

anyway, I've been reading up on the treatment I'm going to have and the short and long term side affects ( mainly what is on here and the macmillian site) - i know it's the best treatment for my type of cancer but it's so scary as there are so many things they need to tell you about what you could experience as side effects. I'm just wondering what other woman have actually experienced with these treatments and if you have any advice or tips to make the whole thing that little bit more manageable?? Or if there is anything I should be doing (or not doing) before I start treatment? I'm just so worried about what life is going to be like once treatment is finished and whether there is anything I can do to try and minimise any negative side effects. (The chemo drug is something called Cisplatin). Seems silly in the grand scheme of things but I've found I've been worrying about the strangest things during this whole experience.

Thanks for listening and for your help.

Hello there,

I finished my treatment last week. I had 25x radio, 5x chemo and 3x brachy. I'm at a slightly more advanced staging, and had pelvic lymph nodes involved aswell.

Overall, I coped pretty well with treatment. I squeezed in fertility treatment and an egg collection prior, finished in the knick if time. In fact, had my collection the day before chemo started!

I had Cisplatin also. Chemo made me feel sick, but they give you pills for that and make sure you take them. There are ones you have to take, then optional ones. My advice is to take the optional ones regardless, no point waiting until it's too late and you're sick. My appetite was usually terrible for a few days after chemo too. Make sure if you really fancy something, you eat it. I became so fussy and I still am. I can have a fridge full off food but everything unappealing, but if I fancied something silly like ice cream I'd just have it. Better to try something.

The radio hit me a little more as I developed cystitis veryearly on. If you're in pain, make sure you ask for something strong enough! I kept getting shooed away with paracetamol and folk on here told me to speak up for myself. Eventually I was given something better as long as tablets to stop me from needing the bathroom every hour at night. The radio also made me very tired, particularly after a couple of weeks. So just make sure you rest up plenty. If you want to sleep, sleep! I kept doing far too much at the weekend, pushing myself too hard and regretting it.

Brachy was unpleasant, but after thefirst one I was okay. It was all just very new and I have bad anxiety problems which didn't help. That's a while away though, can always message me for more advice about that as I'm just getting over it.

So, I finished brachy last week and the other stuff three weeks ago. I'm suffering with tiredness for sure, and the cystitis is still about but I'm dealing. I do still get some sickness and my appetite isn't great, but overall things are moving along. My advice is to take it easy afterwards too, I keep doing too much and then regretting it. If side effects are gonna happen, they'll happen I'm afraid. Bladder problems seem to be the main concern, so just keep people informed of what's happening.

I don't think you can prepare much for treatment. Everyone handles it totally differently. You just need to take it easy, let people do things for you! Also, I'd advise always having an overnight bag ready just in case. I was only admitted once over the weekend for being really unwell, but I wasn't prepared and wish I had been. There's lots of folk to talk to on here, all with different stories. Everyone has a different experience.

Feel free to message me for more info or to chat!

Hani 

Hi Fergs :-)

Great words from Hani above :-) I bet that if you were to read the little words on the leaflet inside a bottle of cough medicine you would find a scary list of potential side effects. This is because you have to be informed about them but it doesn't mean you are likely to develop them. I managed to scare myself silly reading the official literature about the contrast agent you get injected with for a CT scan, which can produce a fatal reaction. But these serious problems are very rare indeed, otherwise the treatment would be changed to something with fewer risks.

I was put on a very strict diet for my radiotherapy treatment, one specially designed not to irritate my intestines and I also drank liquid aloe vera every day as well. After about three weeks I developed a bit of diarrhoea but nothing worse than that. DO take your anti-sickness medication for the chemo. DO sleep and eat when you feel like it and don't stress too much if you can't or don't feel like it. The body has to rule the head during treatment.

Be lucky :-)
Tivoli

ive just bought my mum some aloe vera to drink to see if it will calm her diarrhoea and flatulence. she went for her 14th radiotherapy and they had to scan her again because things hadmoved. apparently lots of wind from her back passage and matter had been passed and so this had moved things. is this likely to happen? apparently the consultant had realined another three that day. has anyone else had this ? x

hi, sorry it's been a few days but wanted to say thanks to you all for taking the time to reply, I really appreciate your advice and Tivoli you are absolutely right, I never read the side effects of over the counter stuff and if I did, I'd never take anything. It's just with all this waiting your mind goes into overdrive and as much as you try to stay occupied it's really hard not to worry. And try to look into why the Drs are telling you.  Will definitely see about liquid aloe vera as well. Thanks again.