Had op - should I have radiotherapy too

Hello. This is a challenging situation! I believe the team will guide you on the best path ahead. Everyone experiences the effects of radiation therapy differently. I didn’t have a choice in my treatment, and I’ve faced long-term effects from both chemotherapy and radiation, but for me, it's a manageable trade-off.

I hope you'll be able to make a decision once you've received the team's recommendations.

Hi, As you will see I am a survivor of 2 cancers, the first was voicebox cancer and had a laryngectomy- removal of the voicebox, I had the smae type of offer from my Consultant and had to deciede within so many weeks, left it to the last week and saw the Oncologist for the Radiotherapy treatment, I asked the %age of the treatment and without, I was told that the cancer coming back was about 10% and RT would reduce the risk to 5%, I am not recommending that this is correct for your situation I'm just saying what it was, the main factor fot me  was the danger of it upsetting my new voice arrangement via a valve in my windpipe the RT could have damaged that arrangement.

My Consultant only recently advised me that had the cancer been suspect in any Lymph nodes then she would not have been as happy for me to not have the RT, as it turned out I was lucky I didn't take the RT because roughly 1 yesr later in a regular scan they picked up OS cancer high up in my OS pipe and I had Chemo and RT treatment had I had the RT then I wouldn't be here today.

What I am saying is question your Oncology team and make notes before you attend the appointment so that you are happy to proceed, It's not easy decision and it will be a rough journey for you  ut as said they are the ones with the full picture of your cancer status

I wish you every success in the treatment you are going through, Take care , Tony

Thank you, and yes, it's finding the balance. It's good to hear that you're coping well with your treatment effects though.

Thank you so much for your feedback. I am only 5 weeks from diagnosis to now so it's all very surreal at the moment and I'm still learning my way.

jacksmac194e30 said:

Has anyone else had to choose whether to go ahead with RT after a result like this? Have you decided to wait for the first check up after the op to make a decision? I am in a quandary because the long term effects of RT are very daunting, especially if everything has been successfully removed in the op.

Hi. Have a look at the profile of one of our members. Click on his name PFJTHS 

Peter did just that. He was on close watch and wait till he did indeed need RT but he had a good few years cancer free and well 

He might pick up on the tag and join in the thread. 

Hi there,

Dani has tagged my profile.  Have a look at it as we are very similar in your current stage of treatment.  I am happy to have a more detailed discussion, but I - with my MDT blessing - chose watchful waiting and was glad I did.  It gave me 4 years before the CRT was brought into play.  I was able to mentally manage the what-if unknowns of watchful waiting, although I know not everyone can.

If I had my time again in similar circumstances I would go down the same route.

Hi Jack,

When I was first diagnosed with HPV in tonsils and neck lymph nodes, I was asked if I would like to take part in a clinical trial, where patients were randomly put in 1 of 3 trial groups. 1 had surgery only, one had surgery with RT only, and 1 had surgery and CRT.

At first I agreed to the trial and signed up, thinking "anything to help cancer treatment research would be a good thing".

However, having then spoken with the RT team, I was lead to belive that currently, the % success of treatment increases (albeit marginaly), with each of the available treatments.

I therefore (maybe selfishly) withdrew from the trial, which meant that I would get the standard of all three treatments, surgery followed by a full 6 week course of Chemo and RT. It was my belief that I wanted everything the hospital had to throw at it. I would have hated to have had a recurrence following limited treatment, and then think "if only I had had all of it!'

So, I am not advising either way, just giving my outlook on why I opted to have it all.

I am now 6 month out from the end of the surgery and CRT treatment, 3 months in remission and feeling well with the only lingering side effect, mainly due to the RT, is that my swallowing is still not 100% back to normal, but easily manageable by drinking when eating.

Hope this helps

MickyC

Hi there! I've been dealing with tongue cancer, but i faced a similar decision to yours, whereby I found myself in a grey area after surgery. Two different MDTs even disagreed on whether I should have RT or not.

But i'm in the middle of RT right now.

Here is the main guiding principle that helped swing my decision:

There would come a day when i realise I didn't need RT.

But there could definitely be a day when I realise I SHOULD have had it but didn't.

My surgeon and consultant also advised a real problem with watchful waiting: that it can give cancer a chance to get the upper hand. Better to stay ahead. 

Worth mentioning, of course, that they gave that advice specifically to me. Your mileage may vary!

This is such a tough decision and one only we as individuals can make s all our situations are different.

i had surgery for stage 4 jaw cancer 9 weeks ago which was pretty brutal and major surgery. They also did a neck dissection as well. My consultant had said he thought radiotherapy would be a must for me. However the pathology showed they had clean margins and no lymph node involvement so it went from a “must” to being offered.

i struggled to decide as i don’t want to lengthen my recovery (which the radiotherapy will do) or open myself up to more long term side effects - again, which the radiotherapy may do.

however, I ultimately have decided ti have the radiotherapy- don’t yet have a start date but am at the hospital today for my pre radiotherapy CT scan.

The deciding factor for me was knowing how aggressive and fast growing my cancer was before the surgery and wanting to eradicate all and any remaining cells from my body.

The key thing is knowing all the implications and getting clear of what is the most important factors for you - not an easy choice at all though.

Hi Peter and many thanks for your feedback. I will go and have a read, thank you. My Dr's advice was that although waiting was an option if the cancer came back I would need stronger treatment. So I have made the decision to have the RT, and I won't lie, I cried when I did.