Recently diagnosed with recurrent mouth cancer

Hi Mini. Welcome. 
So sorry to hear you have a run in with cancer again. I can imagine how you feel. Recurrence is something a lot of us worry about and sadly some have to face it. 
There are quite a few people here who have had the sort of surgery I imagine you might be facing. Two I’ll tag for you as they have both recovered and are leading good lives. chris2012 is a fellow community champ. If you click on his name it will take you to his profile where he has a good account of his journey. 
Lyn is Sophie66 She lives in Australia and is just recovering from her latest bout. Neither of them have given in and are a testament to how enduring the human spirit it. 
Best wishes and stay with us. 

PS

Did you have radiotherapy the first time or just surgery? 

Hi Beesuit

I didn’t have radiotherapy after my last op but had a partial neck dissection. This time they’re doing neck dissections on both sides as they could see two enlarged lymph nodes on PET/CT.

Hi Mini Welcome from me. I am 4 years post radiotherapy snd chemo  for tonsil cancer. If I can help just ask.Am sure Chris snd Sophie will pop on later this evening Try not to google as a lot of info on the net is out of date snd unregulated unless you know where to look. Since your original treatment many things will have improved. . Try to stay positive 

Hazel 

Mini2011 said:

I didn’t have radiotherapy after my last op but had a partial neck dissection. This time they’re doing neck dissections on both sides as they could see two enlarged lymph nodes on PET/CT.

OK, thanks for the info. One of our other members, Peter,  had pretty radical neck dissections so hopefully he will pop on with his advice PFJTHS

If you have to have Radiotherapy it's a bit grim but doable. I had six weeks of it over three years ago and I'm pretty OK.

Good evening Mini2011, so sorry to hear that cancer has returned as Dani and Hazel mentioned i have had a re-occurrence of head and neck cancer three times in three years 2008,2009 and 2010, they all involved a lot of surgery, skin and bone grafts with radio and chemo after my first operation. Going into hospital in 2008 was my first ever visit to a hospital ( aged 48) , thankfully i did not suffer any anxiety or panic attacks but i can understand people who do. Everything sounds horrendous when they tell you the treatment plan but on the whole, i never had any really bad experiences in the hospital and my recoveries were always very good although sometimes a bit uncomfortable. I did not belong to a forum like this back then and did not really understand cancer and what was involved. The best way i found of coping was taking things one day at a time and not looking online about it as i know it can make matters ten times worse mainly because we are all different in the way we cope, manage, recover and adapt, i certainly have had to adapt in a huge way but have never regretted going through operations and recoveries, it also helped that i had a brilliant consultant who always kept me at ease and very confident in his ability along with his team nothing was ever an issue with them. Operations and treatment have changed since 2008 along with the cure/survival rate, i know how difficult it is for you with it coming back after so many years unlike me who got a job lot, i did wonder after my third diagnosis if it would stop coming back, thankfully it was third time lucky. As Dani mentioned you can read my story by clicking on my name, wishing you all the best for your upcoming treatment, take care.

                                                                                              Chris x

Thanks for tagging me Dani xx

Hi Mini

So sorry to hear that you have had a cancer recurrence after such a long time that is a blow but there is definitely life after another diagnosis of cancer. It is another of life’s challenges I’m afraid.

I had my first cancer diagnosis in 2013 when I was 59 resulting in a mandibulectomy, neck dissection and radiotherapy and had hoped that would be the end of it but in 2019 and then again in 2022 had  further cancers develop in different parts of my mouth resulting in 2 more operations (maxillectomy on left and then ride side of my upper jaw) more radiotherapy and a neck dissection on the other side. The cause of my cancer (lichen planus) can only be managed. Normally oral cancer treatment has a good outcome and recurrence is fairly rare. We are just the unlucky ones.

I found the second diagnosis the most devastating but over time with the support of this forum and my medical team came to terms with the situation and am again living my life fairly normally with the exception of some eating issues.

I am currently waiting for some reconstructive surgery.

It is a blow when you get a second diagnosis but with the support of this forum and your medical team you will come through. I did so and now have a greater appreciation of life and wake up with happy anticipation about what the day will bring. I live a full life and have worked my way around the challenges associated with the side effects and am not worried about what the future might bring.

Discuss with your medical team the things that are worrying you about the op and tell them about your anxiety issues. Things have changed with management since your first op and this experience may be quite different to your first one. I found between my first op in 2013 and my second one in 2019 that things had changed quite a bit and for the better.

Macmillan can provide counselling and you could discuss your concerns with them as they have a great understanding of the cancer journey.

We are all here for you and will give you as much support as you need. There is definitely lots of life to live still.

Sending you positive thoughts.

Lyn

xx

Hi Lyn

thank you so much for your response. I too suffer with Lichen Planus which started not long after my first operation. It’s not nice is it! I have never left maxillofacial where I live as I’m monitored regularly. I just don’t know how this second cancer on the floor of my mouth and gums/ small but I’m underside of tongue has come back. I hate it!

im due to have my op two weeks today and I think they’ll have to drag me in as I’m suffering with awful panic and am struggling to eat too. 

im most concerned about waking up afterwards and seeing what they have done and I know after last time I felt awful mentally. I have since been diagnosed with PTSD from that first op and the suicide of my dad in 2012,

im under a psychiatrist and psychologist anyway after having a breakdown in 2018. So I have their support.

I will lose 3 maybe 4 teeth at the bottom, they’re going to scrape what’s cancerous etc, the small bit on my tongue will need to be tethered again which I had last time. They may need to take muscle/artery from my arm depending on how much they have to remove on the floor of my mouth. Then I’ll need another neck dissection. I had the left side done last time but they’re doing that again and the right too. 

I hate hospitals, always have so the feeling like I’m not in control is the worst bit.

did you have to have an ng tube? I did last time but I wretched and vomited like anything and it didn’t help with anxiety at all. My surgeon said he won’t give me one this time but will I need to have a peg instead?

I can have implants afterwards but not for 12-18 months. I was 37 when I was last diagnosed and am 49 now and don’t have a partner this time round.

living on your own does t help with the demons!

any help/suggestions are greatly received and I’m so pleased I’ve joined this group as it means I have an outlet and can get advice from you!

take cate

Mini

Hi Chris

thank you for sharing your cancer story with me. It sounds like you went through the mill a great deal in a 3 year period. That is such terrible luck but I’m pleased you are ok now.

my consultant is amazing and has known me for over 11 years and I trust him implicitly. His team are amazing too.

I’m terrified of hospitals so that’s not helping and I hate not being in control but I’m trying to have the mentality of this cancer needs to eff off as I don’t want it in my body.

the PET/CT highlighted two enlarged lymph nodes so that’s why I’m having both sides dissected. I really don’t want radiotherapy if I can avoid it.

last time I was treated with surgery alone so I really hope that’s the same this time.

I hated having the ng tube last time, did you have one? It made me wretch constantly and the anti emetics did nothing. My consultant said he wouldn’t put one in but will I need a peg instead?

Tjanks chris