Hello everyone,
Long time lurker here but have never actually posted.
My partner was diagnosed with SCC on the Tonsil back in September 24 (HPV positive), T2N2bM0. He underwent tors surgery in November and then because of ECE and low margins in some places he underwent 30 RT and 6 x cisplatin which ended in February.
He has been doing super well with his recovery, but today has noticed a lump appeared along his scar line on his neck which feels quite hard.
Needless to say, we are frantic. He was due to see the ENT for a review next Thursday and we are waiting to hear back from his CNS as I have rung this morning for advice.
Has anyone experienced this before? Could it be scar tissue or swelling perhaps?
Thanks all in advance,
nikki
Thank you everyone for the replies and the kind words.
We have just been to see the consultant and it is classic lymphedema in his words - thank goodness!!
my partner had his first post treatment scope and the consultant had a good feel at his neck and said everything is feeling good so that is also a relief.
Next stop, PET scan and an MRI - must admit I was taken aback at hearing he was having both as I only expected a PET scan, but the consultant said it is routine?
Definitely not looking forward to the agonising wait for the results
Next stop, PET scan and an MRI - must admit I was taken aback at hearing he was having both as I only expected a PET scan, but the consultant said it is routine?
I had both. Clear MRI but hotspot on PET. Quite a few centres are now doing both.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I too had both. I didn’t have to wait long for the results: my CNS nurse rang through as soon as they were back…. I was abroad at the time and she didn’t want me to worry.
I also had the lump experience. Consultant found it during a routine appointment a year after treatment. Cue additional MRI to check it out…but all clear.
Liz
Rescans my advise trust your team and treatment. Our treatment rarely fails at the first hurdle. I tend to take the attitude why worry if there’s nothing I I can influence why waste time worrying.
hugs Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
That is good to know as I was a little shocked when I heard it, thanks Dani.
im hoping the fact that the consultant was happy with what he saw and felt today is a good start, but as he said, he can’t see what it going on below the surface, so back to keeping everything crossed!
Hi Liz,
Thanks for this. I’m glad the lump turned out to be nothing, must have been such a relief. I know today was for us, although after hearing from people on here I think I had more or less rationalised it out in my mind before we got there. It’s just the immediate panic and feeling like you are right back at square one again…!
Im not sure how we will feel if my partner gets a call from the hospital with his results, the way I feel now I think I would pass out if I saw the number showing up on the phone and assume they must be ringing as it is bad news
Thank you hazel - I honestly wish I could be more like you with this one. I worry about every single scenario and the what could get said, what will they see on the scans, how will we cope etc etc I am guessing it is the fear of the unknown. But we have made it this far and so we will continue on to the next stage… thank you for the advice x
HinNikki it will get easier ,the hard works been done treatment and now concentrate on recovery. I know I’m lucky I used to be a worrier years and years ago but regarding my cancer once the oncologist said he was looking to cure me I thought right let’s get on with it. By my nature I’m a glass half full person, which helps. There will be bumps along the way ut knowing when to get concerned m as my oncologist said if after 3 weeks something that’s not right and still there get in touch. I had numerous ulivers post treatment for years but none of them lasted over 2 weeks but if they had I would have been on the phone. Likewise I was told at my 5 years last check up if I have any concerns I’m obviously the books and contact my cns not my gp and I will be seen which is re assuring.
hugs Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
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