Jaw cancer and follow up radiotherapy

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 

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.

Gsterc7a3c6 said:

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 Gsterc7a3c6 

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

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’.

Totally understand and thank you for letting me know. I’m definitely conflicted on it.

I understand the extra risk you may be under considering this is a second cancer in the same area. I presume a new one rather than a recurrence? Country Lass has a very valid point. Is there a possibility that you can heal for a while or does your surgeon think the best time to mop up hidden cancer is now? 

It's awful when patients are face with this sort of choice. How can they possibly be properly informed without understanding the biology of their cancer. 

I was never faced with any alternative so I trusted what my oncologist told me. It must be doubly hard to make a decision. How long have you to decide?

They think it is probably a recurrence of 5he tongue one but this time on the gum and then with local spread into the jaw - hence labelling it a T4 the previous was a T1. The ideal time for adjuvant radiotherapy which this would be is to start witching 100 days of surgery that’s the national guidelines and so what they want to do so I do have a bit of time (I’m 52 days post surgery at the moment) but not too long. I feel I have really good information (well, as much as can be known other than the - if I have it will that deal with it forever question) just a massive confliction over if I want to risk the side effects for a possibly better outcome. Hard call to make - hence my post trying to connect with people who didn’t have horrific stories of radiotherapy. I read some of your blog and your experience sounded really nasty - thank you for being so open and honest about your journey.