Cancer clear but was aggressive decision to make

Hi, 

It's a difficult & very personal decision to make. There's no doubt there will be side effects from radiotherapy & the treatment itself is not nice but will it provide you with more confidence in keeping you cancer free

.My cancer had spread to a lymph node so I was advised radiotherapy would give me a better chance of staying cancer free. Would I make the same decision now knowing what side effects I would have, I would have to say yes, in a heartbeat.

What percentage did they give you if you had radiotherapy? 

Take your time & do some research before you make a decision. 

Good luck. 

Hi, thanks for your reply. What side effects have you had and how long ago was the radiotherapy? I will do a lot of research for now I am cancer free.

J

Hi, I have dry mouth, which is manageable &  difficulty swallowing some types of food. Can't do really spicy anymore. 

That's about it. You have to be aware of your oral health & look after your teeth

I was lucky that my tumour had not crossed the mid line of my tongue so they managed to salvage some of my salivary glands. My radiotherapy finished Feb 2018. 

Hi, I have dry mouth, which is manageable &  difficulty swallowing some types of food. Can't do really spicy anymore. 

That's about it. You have to be aware of your oral health & look after your teeth

I was lucky that my tumour had not crossed the mid line of my tongue so they managed to salvage some of my salivary glands. My radiotherapy finished Feb 2018. 

Hello Saturnal , wow this is a hard one as you can take a chance that it does not come back and if it did you still have the option of more surgery with radiotherapy /chemotherapy. We all know that radiotherapy does have side effects that can still be present years afterwards, mainly a dry mouth. I did have radio and chemotherapy after my operation where I had floor of the mouth cancer, unfortunately, it did return for me but I could only have surgery as I had reached my limit of radiotherapy. I think if they said to me do you want treatment I would have said yes as I had a young family and did not want to take a chance. I know it returned despite the treatment that's why it's a bit difficult for me to say to you " go for it ". Maybe others on this site will add their comments,  good luck in what you decide, best wishes.

                                                           Chris .

Hi Saturnal, my husband had 50% of tongue removed; one lymph node was also found to be affected. He was recommended radiotherapy as the cancer was aggressive, also the margin around the original site was not as good as the surgeon would have liked. He had the RT, with adjuvant chemo, and I won't lie; it was very unpleasant and there are side effects which are still with him. However, he is still here after 4 years, whereas we were told that with an aggressive tumour, if it does recur, it is likely to return quickly (within 3 years). Despite the after effects, there is no doubt we feel going for the RT was the right decision. Life is still a lot of fun.

Hi. Difficult decision - but make sure you have all the information. Are they suggesting radiotherapy just to the neck? Or to the tongue area as well? It makes a big difference if they can “spare” the salivary glands, which is less likely if tongue radio needed too. Also, are they talking about chemo/Radio or just radio? Again the combination of both has more significant side-effects than just radio. I had Radical chemoradio and it was very tough as many here know from experience, but “just” radio to the neck might be a bit/a lot less severe. You need good info from your team and an idea of what they expect the side-effects to be for you, as your treatment won’t be exactly the same as someone else’s. Ask specific questions if you can - 50:50 it comes back if you don’t have radio, but what is the chance if you do - it may be higher/lower than you think and that may make a difference to your decision.

You  are doing the right thing in getting opinions from those who have had similar treatment, but please ensure your team are giving every bit of info and support they can to assist you in the decision. They will know the specific plan for you and your disease, so plug them for info! If necessary push for another appointment to ask the important questions.

best of luck with making the choice

Hilary

Hi Saturnal

Crikey, it's a tricky one isn't it?

I had base of tongue cancer which was removed surgically with clear margins.  I also had a neck dissection - no cancer in the lymph nodes but the tumour had attached itself to a vascular vein.  I was advised to have radiotherapy as my particular cancer responds well to rt so there was a very good chance that any stray cells would be dealt with. 

I have to say I think I was fortunate during rt that I didn't suffer as many side effects as others but I am experiencing quite a few late effects.  One of my biggest problems though has been damage to my vocal cords.  During rt my voice faded away to nothing and since finishing in August 2018 my voice has gradually begun to make a noise but it is nothing like my old voice, it is bearly audible and very uncomfortable.  It would appear from tests that my vocal cords aren't closing properly and at this stage I'm not sure of the prognosis.  I've not heard of many other people being affected so severely but have heard some people mention that their voices tire with use and go deeper.  

I remember you mentioned before that you lecture so thought it only fair to mention this although for many people it isn't as issue.  You may also have a Speech and Language Team at your hospital who can help.

Knowing what I know now I would make the same decision again to have rt as I didn't want this spectre hanging over me. 

I think it's important that you find out how successful rt will be in treating your particular types of cancer to enable you to make a more informed choice.

I wish you all the best with your decision making and for the future.

Linda

Hi this is Hazsl 9 month post radiotherapy or tonsil cancer with several lymph nodes .i would take my time and research but I have written a blog warts and all of my experiences.its hard but as a 61 year old wimp of a female I did it. Got saliva issues still but also had the words no signs of cancer in my last pet XX scan which is reassuring and last weeks camera again no sign of any reoccurrence again reassuring. But the decision is yours we all react differently would I do it again the answer is yes .

www.radioactiveraz.wordpress.com

ask as many questions as you want in here

good luck

hazel 

Thanks everyone for your advice. Has anyone tried new immunotherapies rather than radio? 

How do you look after your mouth post op when at home? Teeth cleaning mouthwash etc.

Lastly spent the afternoon in A&E as arm swollen and graft on my wrist weeping. Hand swollen so on antibiotics. Has anyone had that as when I left outpatients 4 days ago, the graft was intact. 4mm circle near stitches has opened up. Will call surgeon but here on my own for a few days and hospital a fair distance.

regards