Radiotherapy or not?

Hi. We have just the man here for you. , Peter. 
I’ll tag him, meanwhile click on his name which will take you to his profile you can read. 
PFJTHS 

Whilst I didn’t have the decision to make between having RT or not, when I met with my oncologist to talk me through RT I was told that I ‘only just’ met the criteria for having RT. She talked me through the benefits and drawbacks to having it and there are a few drawbacks that’s for sure but in the end, she said that RT will help mop up anything that they haven’t seen themselves or in scans. Hopefully with yours being CUP that’s the same and it helps to lower the recurrence risk. 

Yes. As Dani says have a read of my profile. Happy to have a conversation using the messaging system if that helps. 

Hi Brynmor8b9b4a, welcome to the group from me. Fortunately, I didn't have to choose of two options, I really feel sorry for those who do. I think it is best to consider strongly what the consultants say. I was of the mind that they were the experts, so I just put myself in their hands, and went with everything they said, not having any medical knowledge I thought that was  best for me to do. Good luck with whatever you decide to do.

Ray.

Hello,

I had T1 N2a MO Base of tongue cancer which was treated surgically with a partial glossectomy & a left selective neck dissection for a 4cm metastatic node with 33 other nodes removed but none positive for cancer. I needed a second op for better margins which cost me my epiglottis. I was horrified to be asked to decide whether or not to have chemotherapy & radiotherapy. The surgeon advised I'd not need it, the oncologist said I should have it. I decided against. At the time I was very comfortable with that decision. HPV positive H&N csbcer has such better outcomes than HPV negative - I felt I could afford to turn down radiotherapy. 

 A couple of years later I discovered there is only one reason why HPV positive cancer has better outcomes - because it responds so well to radiotherapy! I was disappointed that neither the surgeon nor the oncologist told me this. So it turns out I took a bit more of a punt than I realised. 

Most recurrence is in the first two or three years. I'm 4 years in February. After my 6 month check up this week I'm being booked in for Ultrasound & possible FNA biopsy to check some new bumps in my neck. It could be fibrosis or it could be cancer. That's how it goes.

Would I have had the radiotherapy if I knew at the time about that being the key thing in the much better outcomes for HPV positive cancer. Almost certainly yes.

Hi. Thank you for responding to my question. One thing that is not clear for me is whether you are HPV positive? And if so, does that mean the radiotherapy would have been more successful in preventing a recurrence? Take care and I hope things go well with the ultrasound.

Brynmor8b9b4a said:

And if so, does that mean the radiotherapy would have been more successful in preventing a recurrence?

I’ll try to answer that. The reason long term survival is better with HPV driven oropharyngeal cancer is because the cancer cells are uniquely sensitive to radiation and treatment leaves none behind. Recurrence , especially in the first two years, is down to cancer remaining after treatment 

Hi,

Yes HPV positive. I can't understand why neither the surgeon nor the oncologist told me about how treatment outcomes for HPV positive throat cancers are so much better BECAUSE of radiotherapy. I think if I'd have known that at the time it would have been a no brainer. The surgeon was very confident that I didn't need radiotherapy. He's the one I always saw. I met the oncologist just once and he was very keen that I have radiotherapy. I thought the difference with & without was around 5-10% - I now believe it's a much higher chance of regional failure. But i've made it to 3.75 years & fingers crossed the ultrasound will confirm fibrosis/traumatic neuromas and not nee metastic nodes. 

It was a confusing time to try & make a decision - even discovering I had to make a decision threw me. After the first op I was in intensive care for three days & the surgeon never explained why. After the second operation, which was supposed to be much smaller, the recovery was awful especially with aspiration. The speech people arranged a videoflouroscopy & told me my problems were because I'd lost some of my epiglottis. I said the surgeon never discussed my epiglottis - not even when I got a post op infection and could barely breathe. I asked him at the next appointment if he'd operated in or removed any part of my epiglottis. He said no he hadn't. Last week the doctor I saw at my check up told me almost all of my epiglottis had been removed. Crazy eh? I can't make head nor tail of it. 

Anyway, if I knew back then what I know now I would have had the chemotherapy & radiotherapy. 

Hope things go well for you. 

Wryneck said:

Last week the doctor I saw at my check up told me almost all of my epiglottis had been removed. Crazy eh?

Strange. 
my epiglottis has been totally obliterated by the RT and I have no trouble swallowing. Removing the epiglottis used to be a treatment to stop snoring. 

My GP once told me that each speciality doctor wants to do his speciality.  Surgeons want to operate to make you better and say, oncologists, want to irradiate and use chemo to make you better.  That is what they are trained to do and sometimes they have a narrow view of what effects other treatment have on your outcome.

As an informed patient you are best placed to understand this jigsaw in the context of your health and make decisions based on the evidence you have.  The decision you made at the time was a perfectly valid one especially if the margins were good and you were on a close watch subsequently.  Realistically you only get one shot at the CRT so if it later returned you big guns were no longer available to you.  They are now if something is there that needs dealing with.

I made it to 4 years before I had a tumour that stayed stable enough to use my one shot of CRT on having exhausted the surgical route.

I am sure your surgeon has not lied to you.  It would be more than his job was worth not to keep accurate records.  Maybe the epiglottis was damaged by the infection??

Anyway, fingers crossed all is OK.