Hi

Just saw your post. I have finished 6 weeks of radiotherapy on Friday 17th April 2020 for tongue cancer.

I have started to struggle with eating this week but have been eating soft food with shakes previously. They say the next few weeks are hard but see how it goes. If you need any support or advice (not sure I can help) but I am here if you need to talk to someone on a similar recovery time plan

quayley44

Hi thanks for replying. How are you feeling is your pain bad now? Do you mind me asking what pain relief you are on as I am on quite a bit now quite quickly it seems. 

Do you have the stinging every time you try to eat or drink? I was fine eating soft foods up till last week too now shakes are a struggle as well! 

Are you able to use a salt water rinse as it is so painful for me to do?

sorry so many questions! Well done for getting through 6 weeks it’s such a relief isn’t it 

Hi April

Congratulations for finishing your treatment!

I had oral tongue cancer T3N0, a partial glossectomy and 6 weeks of RT that I finished at the end of August last year. By about week 3 I was on a liquid diet only, but managed to maintain my weight.

I was in quite a bit of pain for quite a while after the RT ended. It was about 10 days or so I think before I started to try some soft foods, but eating was slow and painful. By about 4 weeks post RT I was able to eat things like a sandwich. The roof and back of my mouth were very tender. Where the ulcers were healing the new skin was very sensitive.

I continued with the strong painkillers - morphine and fentanyl patches for a few months, as they enabled me to eat. The other thing that was an absolute lifesaver all through my treatment was soluble aspirn mouth rinse. There is no way I would have been able to use either difflam or salt rinse.

I stopped the fentanyl patches I think about 6 to 8 weeks post treatment, and then reduced the morphine. I'd totally stopped the morphine by about 10 weeks. At that point I also started eating out in restaurants again. Certain foods like chilli and strong alcohol was a no go for a few more months.

In short I'd say whilst the first 6 to 8 weeks post treatment were tough, it improved very rapidly after that. I now have no pain and eat a 95% normal diet. Just have a few issues with stringy food that doesn't compress in to a bolus (like stalks of salad!), but that's from the surgery, not the RT. I do not really have any current noticeable side effects from the RT, apart from some soreness in my jaw that's fading over time.

I hope this is helpful, please let me know if you have any questions!

Hi thank you for your comment I really appreciate it! I am just starting week 5 not on any morphine anymore just paracetamol before or when I try to eat the only place that hurts now  is the same as you said, the roof of my mouth and throat a bit or when I yawn! So yours roughly lasted another month and then it got a lot better?

I’m trying to eat a lot more but I get frustrated so sticking to really soft smooth things still. 

Also how long did your taste buds take to come back and are they back to normal now?

thanks so much x 

Yes, by about 2.5 months I was eating most food, eating out, enjoying a few drinks.

I was lucky and my taste buds weren’t too badly impacted. They were weak on the side of my mouth with ulcers. Chocolate tasted a bit weird a few weeks post treatment. But I’d say taste was 100% normal before the pain had even gone. 

Hi thanks for replying again I think I just need to give it more time! How are you doing now do you still have regular check ups? 

I read you posted somewhere else so I hope you don’t mind me asking but I saw you wanted to have another baby, I do too as I have a 4 year old but I was told I should wait between 6-12 months to start trying do you think this is mainly so I can wait to get a clear scan as I could still have some cancer left? I thought it would only be chemo that affected fertility. Do you still worry about yours coming back or not now you have passed a year? 

Hello

No I don't mind you asking at all, it's great to find someone in a similar position to me! All the googling I've done I've only really found information for people who've been through treatment for breast cancer and are considering a future pregnancy.

I don't know why your doctor said to wait 6 to 12 months you'd best ask them, but I can tell you what I've been told. I was told that the total risk of recurrence for me is about 15%. The biggest risk of recurrence is in the first year after treatment ends. My doctor told me that about half of all recurrences occur within the first year. So after one year the risk for me will have dropped to about 7.5%. Half of the remaining risk is in the second year, and then almost all other recurrences would be in the next 3 years. After 5 years the risk is similar to someone who's not had it before. So I've worked out that my chance of a recurrence looks a bit like this:

Post treatment - 15%, after 1 year - 7.5%,  after 2 years - 3.5%, years 3 to 5 - gradually decreasing from 3.5%.

Therefore the longer you wait post treatment to get pregnant, the lower the risk of getting a recurrence. My doctor said in an ideal world I'd wait 5 years, but as I've just turned 40 I don't have 5 years to wait. Although there's no suggestion the type of cancer I've had is exacerbated by pregnancy (as it's not hormonal), it wouldn't be good to have a recurrence whilst pregnant as it may impact your treatment or lead to some very difficult decisions. I really want another baby but I'm also scared, particularly as my cancer was diagnosed when my first baby was 7 months. That fear is getting less as time passes and I think that trend will continue. Knowing how the chance of recurrence reduces with time has made me feel much happier generally, and like I can move on with my life. 

Yes I still have check ups every 6 weeks and I'll have another scan one year post treatment then annually until 5 years has passed. My check ups will become less frequent over time. 

Please do keep in touch as it's nice to find someone in a similar position!

Hi yeah that’s the same as I was finding for breast cancer or if you have chemo nothing to do with mouth cancer.

 Its horrible especially with young children the fear is even worse! But I don’t want to wait too much longer either so I guess it has to be soon or never which is a really hard decision of course! But then I think I might not have found my cancer for a few more months and could have already been pregnant by then as I was trying at the time I found out I had cancer. But then again how many people have been through a similar situation and have never had a reaccurance!

 Do you mind me asking what time of cancer you had and was it only on your tongue? Thanks for the percentages that’s really useful I’m not sure what my percentage is I’ll try to find out. My doctor said it hasn’t spread anywhere else but majority of people I have seen on here had a neck dissection as well so how can they be sure it hasn’t gone into any lymph nodes? 

What do the check ups involve just the doctor physically examining? I expected a scan sooner than one year but maybe it needs time to tell which is scary too!

Hi April

I'm so sorry I didn't reply to this! On a positive it was because life is pretty normal, so I've not been back to this forum! I just had my one year post treatment ending follow up MRI, and all is clear! So relieved!

I had a squamous cell carcinoma on the side / underneath of my oral tongue, and it had not spread. However my scans pre-surgery did show some enlarged lymph nodes, that plus the size of the tumor is why they did a neck dissection for me. I expect they make an assessment on a case by case basis - there are ongoing side effects from the neck dissection so they'll only do it if beneit outweighs the risk. 

My check ups are every 6 weeks and yes they involve a visual and physical examination. My doctor puts his finger in my mouth and feels and prods all around my tongue. He then checks my neck.

How are you doing post treatment?