Recent diagnosis of cancer Right T2 Tonsil

Hi Kramed

I had suspected tonsil cancer (primary never found) and had neck dissection. chemo (2 sessions) and radiotherapy x 30 sessions. My team told me I could opt out of RT or just have it to the side where I had my  squamous cell carcinoma neck lump but, did say the cancer would come back if I didn't go for the full RT both sides. I am no medical person, so I just had to go with what my team suggested. I am 10 months post RT treatment and my speech is normal. I get a slight croaky throat in the morning ocassionally if I am run down/dehydrated, but that resolves after a glass of water or two.

Have your team suggested a best route for you? It is a pretty hard decision to make unless they have given you some sort of guidance. Having been part of this forum for a year, I have learned that even within our apparent same cancer diagnosis, that everyone (and treatment/outcome) are so different, that everyones story helps a lot but, it is entirely up to you what you feel happy doing.

All the best

Tricia

thank you Tricia

Im thinking of surgery and may need radiotherapy afterwards - or the  other option is 6 weeks radical RT

Im going to speak to the Macmillan nurse tomorrow - its all very new at the moment - big decisions to make!

Regards

Tim

I know. It is quite overwhelming. My situation was a forgone conclusion. So although it took away my decision going forward it was still a huge step outside the norm. That said, even with RT and chemo, I never needed a feeding tube, only had 2 mouth ulcers, only needed paracetemol throughout and am now back to 80% of eating what I could before. I think I have been very luck. My Macmillan team were an absolute godsend and a fountain of knowledge.

I am happy to help further if you need.

Tricia

Hi Kramed I am 2 years post radiotherapy for tonsil cancer with several affected lymph nodes surgery want an option for me due to  lymph node being too close to spine . I had 35 radiotherapy sessions and 2 chemotherapy sessions. Be guided by your team there’s no wrong mor right answer. My diagnosis T2N2NM . I am now fit and well and living my life with very few side effects slight dry mouth and some tiredness  a quick 20 min lie down once a day sorts me. This week I’ve cycled every day .

Good luck HazeL let us know your decisions 

Good evening Kramed , its always difficult to choose between surgery or treatment , the only thing with radiotherapy is that you can only have a course of it once in that area so sometimes its can be used as a back up should surgery fails plus maybe its best to have the tonsils removed anyway if they are causing problems, also with surgery i dont think you will suffer from the possible side effects of radiotherapy. I have had not had cancer in this area but im sure it does not affect your speech long term .If you opt for surgery maybe ask about having a PEG (feeding tube ) fitted in case of swallowing difficulties. As Hazel said some people cannot have surgery so have to have just radio and chemo or in a lot of cases they are offered surgery with radiotherapy afterwards . All the best with your meeting with your consultant, take care.

                                                                                          Chris

Had transoral robotic surgery

and rads...speech not affected

thanks for your reply - its really helped

thank you for your reply, it really helps with the decisions i have to make

I had tonsil cancer also. T1N1M0

Hi kramed

Welcome to the group. You've found people with much experience and as importantly, surviving and thriving. If you have been offered surgery OR radiotherapy then there is much to discuss with your team. It might be possible to avoid radiotherapy for now or for ever. Treatment for tonsil SCC doesn't usually cause speech difficulty so I would rest assured on that front, but do bring it up with your surgeon/oncologist. Good luck

I myself had base of tongue cancer, not tonsils but I did have my throat irradiated.

People who have had their tonsils out in adulthood do say its painful but manageable