Hello. I went to see my consultant this week. I have pain and discomfort in my groin, becoming slowly worse. My mum was there and she asked should it be left alone,my consultant said he would,then in a turn of conversation he said I’ll send you down to the Radiologist to talk to her about options,we went down and talked for ages,i signed up to have it,but now feel im betraying my consultant and my mum,so upset,had radiology appointment today to be measured, tattooed and had a CT scan. Ive come home googled nhs side effects and i feel so upset,feel like a rabbit trapped in headlights. Do i carry on putting up with the pain,up to 15yrs without anything or go for it but suffer potential side effects long term,stroke risk,cancer spreading elsewhere. So confused right now. Can anyone tell me if they’ve had radiotherapy treatment before,need some advice please.
Hi, I haven’t had radiotherapy but I just wanted to say it seems a really horrible situation for you to be in.I cannot even imagine all your fears, thoughts and feelings. I know my head is like a washing machine whizzing round when I am fearful, scared and don’t know what to do. Perhaps you are doing all you can by asking the question here, collecting all the information you can and asking all medical professionals that know your medical history, but don’t forget you are a special individual and what is the best course of action for another is not necessarily for you and then make a decision. The Bloowise support line details are above for you to speak to, they are not available on bank holidays. Keep posting we are all here to support you.
Thanks Erica, still can’t make my mind up, I have txt my cancer support nurse to ask for advice, and to see if my consultant will call me, I don’t know if they do that or not, but I don’t expect to hear from her till the new year. I feel I’m on a roller-coaster, I’ve had the measurements and the ct scan and tattoos, so I feel if I back out I will of wasted their time. I’m emotionally drained, I thought of not much else all day. Its not easy is it. Have a happy Christmas. Xxx
Hi, it sounds as if you are doing all you can and ultimately don’t forget the decision is yours. I certainly know the roller coaster feeling, scary and my mind just goes round and round in circles. Someone once said to me that I really needed to look after myself by eating healthily (with the odd treat!!) and getting rest, fresh air and exercise so I was in the best place to make decisions when I needed to. Easier said than done, especially when one of the most difficult time of the year is upon us. Take lots of care of yourself and keep posting.
Hi Rebecca @NewYork2011 I had radiotherapy after chemotherapy and a SCT for Hodgkins. My RT was on my neck and chest, so different to your case. I was given medication for expected side effects. At each stage of my treatments I was given a list of potential side-effects, but then you have to balance what is happening now and will happen if you don’t have treatment, with what MAY happen if you do have RT. Nothing is certain, and doctors now have to give worst case scenario (just like medications have a sheet with side effects etc now).
Do discuss your worries with your consultant and CNS, and also ask about your CT scan results and if, after that, you decide not to go ahead with the RT, then that is up to you. Just remember that each case is unique, and google won’t know you as well as the medics. Be kind to yourself
Thanks that’s helpful,so much to think of. Im going back to hospital January 8th to see my radiologist but i think im going to hold for a bit till i really need it.
I find it really helpful to write down all my questions, fears and thoughts to ask the consultant or CNS because they go completely out of my head when I walk into the hospital. Let us know how the appointment goes on January 8th and take care.
Hello Erica, my mum usually comes with me to big appointments with my husband, but last couple of ones shes heard things we haven’t which leads back to a very confusing conversation afterwards. My mind goes blank,i think of questions while im in there,and forgot what else i wanted to say. Hope your well. Xx
Hi, I had radiotherapy to my head and neck. Had a lump just below my ear. It was affecting my facial nerves and becoming quite uncomfortable as it grew which is why I had the radiotherapy, otherwise it may have been left. Also, it was originally thought to be stage one so there was a possibility of completely getting rid of it, although obviously no guarantees. I was also given medication for side effects but these would be different to yours because of the area being treated. Write down all of your questions, make sure you ask them and get someone to write down the answers. I knew all of the risks but for me, because it was thought to be early stage I went with it. Think you have to go with what decision feels right to you
Hi Nichola, over Christmas ive thought about it alot,im almost sure im going to hold off. There’s so much to think about, especially in the long term. Thanks so much for replying.
Well i went back to the hospital on Tues and declined the radiotherapy treatment for a while,ive spoken to my gp and he has tweaked my pain medication. The radiotherapist said if the pain gets worse she’ll twist my arm. Any major changes call my clinical nurse and i can go in to see my consultant. And I’ve chosen to go in. every 4mths instead of 3,because im finding the period inbetween so short i dont get a chance not to think about it. My last pet scan shows as well as both sides of the groin its spreading into my pelvic area on the left. But i feel in control of my care somewhat and its made me generally feel better. Xx
Hi, thanks so much for updating us. I am glad you have considered what you feel is best for you and you feel in control of your care and somehow it has made you feel better. Please keep updating us and take lots of care of yourself.
Thanks Erica. I hope your doing well. Xx
Glad you made the decision that’s right for you. Sending lots special wishes x
Thanks Nichola,i feel i have,and strangely enough it feels a weight has been taken off my shoulders, i think its because i feel i have some control over my care. Sending you best wishes. X
Hi, I am pleased that you feel that you are back in control of your treatment options. The important thing is that you are doing what you feel is right for you at this moment, and you can revise your plan as you feel the need to. Good luck