Hi all
Last summer I was diagnosed with HPV tonsil cancer which had already spread to a lymph node (T1N1M0). I was given the option of CRT or surgery with a c. 80% chance that I would still need follow up CRT, but it would be more targeted. I opted for surgery - bilateral tonsillectomy, TORS and neck dissection with 50 nodes removed. I was in the lucky 20% and that was the end of my treatment. Fingers crossed.
There’s a lot of discussion on this forum about CRT being the best option to ensure no recurrence - ‘gold standard’ or ‘belt and braces’. This gave me a lot of anxiety that I’d made the wrong decision so I chatted to my consultant. I thought there were some useful points to share;
- research on HPV HNC is developing fast and less aggressive treatments are preferred and can be as successful.
- this is particularly the case for early stage cancers and that can include spread to a node
- around 20-30% of early stage HPV cancers diagnosed are now treated with surgery only and no CRT.
- there are clearly lots of caveats about how the team decide whether CRT is needed following surgery.
- recovery from surgery and long term side effects are much better than CRT and I guess we see fewer of these stories on the forum because we don’t need as much support.
Hope this info might be useful to those having to make this decision.
Good to hear you are doing so well.
Sadly though my cancer was early too with no nodal spread, at the base of my tongue it was inoperable.
You’re right Woodz that early stage HPV + oropharyngeal cancer that is respectable with clear margins can be cured without CRT. The de escalation studies have not shown that reducing the amount of RT for those of us that need it is beneficial.
We await Flash and hope for better outcomes ones.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I hope I haven’t upset anyone posting this - but I had a lot of anxiety thinking I should have had CRT to be sure.
Of course you haven’t. The medics know what they are doing. If they felt you needed CRT you would have been told.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Woodz,
like you, I was T1N1M0 and I opted for surgery. I had the right tonsil out, tongue base and the lymph nodes on the right side too.
I was told by my surgeon that, as my lymph node was above 3cm, radiotherapy was required.
I duly met with my oncologist before RT and she told me that, in future, the 3cm rule to decide whether or not to get RT will be a thing of the past soon enough and it would very likely be surgery only for the vast majority going forward. I asked why and she said it was all to do with their studies and data collection showed that this was a very effective way of dealing with this type of cancer with a favourable prognosis.
clearly everyone is different but I’ve put my faith in these very smart people who know what they’re doing. It’s a very evolving field 
