Hello everyone! Wanted to join your lovely group and say hello......I’m in the US, so I know things may be a bit different and hope it’s okay I’ve joined here, but I’ve learned so much on this site, and have been so, so encouraged!! I’ve read every word of Hazel and Dani’s blog!!
Our journey began in January when my husband found a swollen lymph node, and it came back positive for SCC HPV +. I’ve never been more afraid in my life! Since January, I’ve learned to breathe a bit, but ride an emotional roller coaster every day. Fast forward...My husband had TORS surgery March 12th. They were able to find the primary - BOT. Small tumor...1.5 cm. He had bilateral neck dissection- both sides done because PET showed small uptake on right neck area. In all- 2 positive nodes on the left, none on right. Clean surgical margins, but unfortunately, one node showed microscopic Extranodal extension. Darn!! Because of that- Medical Oncology is saying chemo required. Radiation will consist of 6 weeks to left side only...thankful for that!! Our dilemma is that our surgeon, who is, I would say forward thinking in terms of current treatment trends, research studies, etc, does not feel that my husband requires chemo....Medical oncology is adamantly saying yes because of the ENE. We’ve been given the general number of 5% that chemo adds to odds of cure, etc. We are absolutely torn between what to do. I’m so disappointed that we’re in this position of needing to decide. We know that the chemo potentiates the radiation, so both short term and long term effects could be worse. So while we want a cure, quality of the life lived is a concern, as I’m sure all of you know, more than us at this point!!! But definitely afraid of recurrence also. Any thoughts or words of wisdom welcomed! Mask fitting and planning session is Monday, then rads to start probably week after, so we need to decide. Thanks ahead of time!!! Appreciate you all!
I will continue to read and learn from you all! So amazed at everyone’s courage, and stories!
Thanks for letting me chime in!
Elizabeth
Good evening Elizabeth, normally over here the consultant is in charge of surgery so once the surgery is finished the oncologist will decide what further treatment is required. I know the percentage is pretty low but if one of the nodes is suspect then i would have thought they would give the chemo but I'm not an expert. I know over here things are a bit tricky over here with the Coronavirus where some chemo appointments are being cancelled. Have a word with them on Monday about the pros and cons of having chemo. You are more than welcome to post on here, best wishes to you and your husband, take care.
Chris x
Its sometimes not easy but its worth it !
Hi Elizabeth.
if your husband has extra capsular spread I would go with chemo. Listen to your oncologist. The surgeons job is done and hopefully you won’t be needing his services again. Bye bye! 
Sorry to be so blunt and I’m not trying to be flippant but it’s your husband’s life.
That’s my two pen’orth
Thanks for reading the blog
Penrod and Mike0 have blogs that are much better than mine. If you have a sense of humour do please read Penrod’s. Cancer? You’ve got to laugh!!!!
Please keep us in the loop. It’s good to hear from folks across the pond.
Also, have you checked out Inspire. They have a vast head and neck cancer section.
Take care and good luck.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Pipanddily, well done in coming to a decision,it makes sense, his positivity and strength will surely help him get through it all, i fully understand about the feeding tube, but they could fit one via his nose N.G tube if needed, please do pop in and keep us up to date, for advice or just a chat, we might even allow you to whine 
If you press on my name it will take you to my profile where i have written a bit about myself. All the very best for the future and hope all goes well, take care. Will be nice to hear from you again .
Chris x
Its sometimes not easy but its worth it !
Hi
That's good that a decision has been reached. It gives you both a goal instead of living in suspension. It’s strange how practices differ at different institutions. In most hospitals here patients undergoing radical radiotherapy have a stomach tube placed as a matter of course.(Those that don’t have provisions in place to have a nose tube should your weight drop off). Putting in PEGS has largely been suspended over Covid at present as it requires a trip to theatre. A few people do get by without tube feeding but most don’t so just a warning. I’m sure you would have discussed this already with your team. There are swallowing exercises your husband can do if he does need a nasogastric tube in place. Don’t worry about it as it’s easily put in and painless. It’s very very important to maintain weight to cope with the damage and to heal. I wish you the best of luck
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
