Radiotherapy or no radiotherapy

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Hello every1 so since November I've had 2 operations to remove the lump off my vulva and a 2nd to remove the lymph nodes from my groin area. They have got all the cancer. So now it's to have the radiotherapy or not and the fact I may not b able to have children as I don't have yet I'm only 36. I don't have a partner so I don't really have any1to speak to about it. I'm edgeing on no treatment and for the regular check ups as obviously there t a lot more cons with treatment. Id need 5 weeks of treatment with 1 session of chemo a week aswell 

  • Hi ,

    It sounds like a difficult decision to make and one that only you can decide on.  Could you speak to your nurse (if you have one) or consultant to see what they advise and see if they could perhaps give you some statistics on the chance of reoccurrence with or without the radiotherapy? I’m not sure if that’s something they can do, but I’m sure they could help in some way. I wasn’t given the option to have radiotherapy, but I think that’s because mine was only stage 1B. I can only imagine how difficult the decision must be for you though. 

    I was only 37 when diagnosed (38 now) and I don’t have a partner either, so our stories are similar in that sense. I appreciate it can be difficult not to have a partner to turn to. 

    If you have any questions or would like someone to chat to then I am here Slight smile

    Good luck with whichever route you choose!

    Take care, 

    Vulval cancer warrior xx

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

  • Thank you yeah I'm waiting on a call back from my nurse I missed the call today I never got told a stage I was going to ask that aswell I think that would give me a better understanding of it all. The cancer was only in the first 2 lymph nodes on my left side so because they got it all  more leading towards no treatment and just getting check ups with what ever that would intale 

  • Hi ,

    I hope your nurse calls back soon and they can answer your questions. I think knowing the stage will be helpful.  It has just come to me that prior to having my sentinel node biopsy my consultant said she would recommend radiotherapy if my lymph nodes were positive. Mine were negative and therefore she didn't even suggest radiotherapy for me. I am assuming your 2 positive lymph nodes are part of the reason you have been offered radiotherapy.

    Only you can decide what is best for you. I would make a list of questions so that you don't miss anything and then see what the nurse says. Hopefully with her knowledge and your questions answered you will be able to make the decision.

    Please do let me know how you get on and feel free to message any time.

    Take care,

    Vulval cancer warrior xx

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

  • Yeah she phoned me back today altho couldn't give me all the info that I needed on odds and things but my stage is 3A2. She did make some good points like if I didn't have treatment and o got pregnant in a year or 2 and the cancer came back then obvs it could get worse for me. I have a appointment Friday to speak to the fertility people to get a better idea on how infertile actually means. As in my nurses opinion that is very likely to happen 

  • Hi ,

    I am pleased you have managed to speak to your nurse and that she has been able to tell you your stage and give you some information.

    I am sorry that your nurse has said it is likely you would become infertile. This must make the decision very difficult for you. I hope the fertility people can answer all of your questions on Friday. Again I would jot down any questions so that you don't forget any. It is hard to remember everything and I have kicked myself many times for leaving an appointment and realising I have forgotten to ask something.

    I have everything crossed that there is a solution that could make the decision a little easier for you. 

    Take care,

    Vulval cancer warrior xx

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

  • Thank you I really hope so. I just wished they could just tell me this is what u need to do would b so much easier for me 

  • Hi ,

    Sorry for the delay in responding, I didn’t see that you had replied.

    I am the same, I find it easier if I am told what I need to do. 

    Was your fertility appointment on Friday just gone? If so then I hope they managed to shed some light and help you make a decision.

    Vulval cancer warrior xx

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