I'm new to this forum (I'm currently being treated for breast cancer and now my husband is poorly). He is in hospital having just had surgery to remove a growth that has been diagnosed as buccal mucosa squamous cell carcinoma. He has had arm flap surgery to plug the area and a neck dissection. He had a CT scan and MRI and no sign it had spread. We'll have to wait to see what the lymph nodes show.
Has anyone had a similar diagnosis/ undergone this procedure. I've read that long term there's quite a strong chance of reoccurance. My husband is worried about mobility and getting back to work ( he's a very practical chap and rides a motorcycle). The arm and mouth surgery is on the left side and luckily he is right handed. I think he's hoping to avoid radiotherapy and chemo. Due to my own chemotherapy/ hospital appointments I've not been able to attend all of his and he doesn't like to talk about it much.
Thanks in advance.
Oh Moomin I am so sorry you’re both going through the mill
I don’t know much about Buccal SCC but my oncologist warned me not to go looking for statistics on Google as they are averages and retrospective.
There are members here who have had similar reconstructions for tongue cancer and they do well. Hopefully they will pop on to talk to you.
I do have a friend who went through breast cancer while her husband had treatment fir throat cancer. They are both fine. I’ll tag her and see if she is around to have a word.
She is Sharon
Base of tongue cancer. Out of radiotherapy January 2019
Blog about my cancer.
I am so sorry that both you and your husband are going through such a tough time at the moment. I did not have the same cancer as your husband I had jaw cancer but I have had the same op as he just had. I found that it took a few weeks to recover but after about 8 weeks I was fairly much back on top of things and able to do most of the things I was doing previously. It is now just over a year since I had the surgery and find that the main issue with the forearm flap donor site is still a change in sensation and a prickly feeling but most of the time I don't notice it. Initially I had a slight loss of range of movement in my wrist because of a tightness from the skin graft but that has resolved now and my range of movement is back to normal. I have had no issues with the skin graft on the roof of my mouth.
I found that there was no point worrying about recurrences as no one can predict the future. You have to concentrate on the present and the recovery from this op. I found when these thoughts arose it helped to keep busy so I did not dwell on it. Your husband is in good hands and if there is ever a recurrence early detection makes all the difference. Your husband will be having regular checkups for the next 5 years so his medical team will be on the look out for anything that might occur. I decided to put the worry back in my medical team's hands and let them do their job and concentrate on getting on with my life. If you are constantly worrying about a recurrence then you are not able to get back to enjoying life and what a waste that is. I decided that if I had a recurrence I would handle it then and that has worked for me. You don't want to waste the second chance at life you have been given.
Hi Lyn, Thank you for taking the time to reply. You are right about keeping busy and it's usually when I can't sleep ( most nights unfortunately and very irritating!) that the overthinking and worrying gets worse. It sounds like you've received great care and recovered really well. I find when I Google the subject generally it gets a bit doom and gloom so I'm going to stop that and concentrate on being positive for us both! I hope everything continues to work out well for you and thanks again for replying.
Hi has others have said please keep iff Dr Google and as fir reoccurrences I’ve always taken the attitude why worry over something I’ve no control over. Remember to look after yourself as well. We find often men don’t talk just be there gif hkm snd you’ll end up supporting each other. Hopefully he won’t need radiotherapy but if he does we’ve plenty of tips to help with that.
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
Firstly, I’m sorry you have found yourself here.
I don’t come here very often now as I support others in a different forum as I set up various cancer civil service cancer networks.
I did get an enormous amount of support from here back in 2019/20 when I found myself in a very similar situation to you.
Heres my story should you wish to have a read.
Looking back, I don’t know how we did it…..but we did!!
My husband is similar to yours, he didn’t really talk about it then still doesn’t….whereas I’m trying to save the world from cancer one day at a time….so I’m happy to share our story and hope it helps you in some small way.
You will get through this……just like we did…..but there’ll be tears and tantrums, ups and downs.
iIf I can help in any way, please let me know xx
Hubby - Left tonsil squamous cell carcinoma P16 positive with neck nodes T1N1M0 - 30 fractions of radiotherapy and 6 weeks of chemotherapy, Cisplatin in December / January 2019/20
Me - Invasive lobular breast cancer - Grade 2, Stage 2 - mastectomy October 2019 - 15 fractions of radiotherapy December / January 2019/20
Thank you for replying and it's certainly helpful to hear how others have managed to cope. Think I was having a bit of a wobble yesterday, not helped by being thrown into menopause and I can't take hrt as it's hormone positive. Our daughter is 15 and in her GCSEs year so trying to stay strong for her while dad is in hospital. Lots of plates to juggle but we'll get through it!!! Take care and thanks again for replying. X