Jaw cancer and follow up radiotherapy

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Hi everyone.

7 weeks ago, I had a mandibulectomy with a fibula free flap reconstruction to del with a stage 4 SCC along with a neck dissection.

The surgery went well and my recovery has been good. Still frustrated that my speech isn’t 100% back to normal and that I’m pretty swollen (lots of lymphatic fluid build up) and my leg wound is healing slowly BUT overall I am doing really well and the amazing medical team are very pleased with my progress.

we got the pathology results yesterday and we have clear margins and zero spread to the lymph nodes- so that couldn’t be better.

However, we are being offered 6 weeks of radiotherapy and honestly I am conflicted.

i do see the benefits but also am concerned about the side effects - particularly those that might be permanent - less so the temporary ones as I am pretty resilient.

We have to make a decision soon on the radiotherapy and so I am interested in hearing other people’s journeys.

I’ve read a few on the threads and most seem pretty negative. Has anyone had the radiotherapy after similar surgery and recovered well - what was your journey like?

I’d love to hear from you or anyone who can share insight as we look to make a decision on if to do the radiotherapy or not.

Thanks

  • Good evening, i had 3 big surgeries, with the second one being lower jaw reconstruction using a bone from my leg, i did not have treatment afterwards, as i had it after my first operation. Thinking back, i don't think i would have jumped in feet first by saying i will have the radiotherapy and chemo, but i did not know anything about oral cancer as it was my first time i had ever been in hospital, and there were no forums like this back in 2008 that i knew of so i just agreed to everything that was offered. Sometimes its better not to have it, so it can be used as a backup if things go wrong, mainly because of the damage it can cause if further surgery is needed. The trouble is its hard to know what to do for the best, and there are no right or wrong choices/decisions. My last surgery was in 2010, and despite everything, I have made a very good recovery and adapted to my new way of life. It is worth having another chat with your consultant to see how confident he/she are with the success of the surgery. Wishing you all the best in your continued recovery, it sounds as if you are doing well, as it's still early after your operation, you should find that everything will settle down with the swelling and speech. Three months is a good target to aim for. Take care.

                                                                               Chris 

    Its sometimes not easy but its worth it ! 

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  • Thank you, we have had several conversations with the consultant and he has said that it would be his suggestion to do the radiotherapy as that area of my mouth (the left side) has had other cancer issues over the years - namely tongue cancer - but this one was worse and he thinks now would be a good time to do it. That said he is also ok if we choose not to do it but to be most effective now would be the best time. It’s a hard decision due to the potential side effects and the likelihood of seeming like I am stepping back wards. My consultant is very positive over the success of the surgery and also happy with how I am doing. Thanks for the 3 month suggestion that is helpful - definitely making progress though. Glad you are doing so well after all the challenges you have been through.

  • that area of my mouth (the left side) has had other cancer issues over the years - namely tongue cancer - but this one was worse and he thinks now would be a good time to do it.

    Hi  

    For me this makes a lot of difference. I would go for the RT

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

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  • Hi there.  I had same surgery three plus years ago, decided against radio and don’t regret my decision. Always there if I need in the future. You will make the right decision for you!  With all my very best wishes.

    June

  • Thanks for the response, can I ask what swayed you to not have the radiotherapy? I assume you had a similar result after the pathology? 

  • Thanks, the others have all been minor dalliances but yes, I think that is a big part of the reasoning 

  • One of the risks was the damage radio could do to the new jaw, a possibility, not immediately but later.  You are in a better position than I was, which is great. I was stage 4 with infiltration in four lymph nodes. I was 78 at the time.  Surgery had gone really well and I just wanted to heal from that without all the associated problems of the radio’.