Hi everyone yes I'm new on here so would love to hear from you ...my mum was diagnosed with tongue cancer last year at the age of 69 stage 1 she had an operation to remove tumour bo further treatment... A year later lump in neck .. Biopsy done yes cancer has returned she is doing a neck dissection operation then radio treatment after .... Please if anyone has any information experience with similar story please let me know ... She has 2 small grandchildren to see grow up and I can't bare to even think of her not here with us anymore ... Bless you all xxxxx

Welcome to OCF! You are in the right place for info and support to help get your mother thru her upcoming treatments. There are many here who have been thru 2 rounds of cancer and are thriving afterwards. Radiation treatments arent easy for most but with your assistance Im sure she will get thru it.

I suggest you read both here and on the main OCF pages to help educate yourself about the disease and treatments. An informed caregiver makes for a strong advocate for their patient.

The following info is what I recently posted to another member. Im sure you will find it very helpful for your mother as she gets ready for surgery and radiation.....

Radiation isnt easy but with some direction you will do just fine. As the patient gets further into their treatments, it gets progressively more difficult. They slowly lose their sense of taste, many have mouth sores and have problems swallowing. It probably sounds horrible but dont worry, we will help you so stick with us.

To prepare, if you havent already seen your dentist try to make an appointment right away prior to rads starting. Anyone who undergoes radiation for head and neck cancer should wear fluoride trays on their teeth. This can help prevent major dental issues after rads. Also using a waterpik, having impeccable daily dental maintenance and getting regular (if not more frequent) dental cleanings. Since you just had major surgery, ask your doc if its ok to use a waterpik on your new mouth. You sure dont want to have any additional problems if you havent heeled enough before using it.

There will be so many things to do before you begin treatments. Make sure to have a full blood workup done including thyroid levels (and for men also get testosterone levels). You may have problems years down the road with your thyroid. A blood test now ensures you will know what your regular baseline thyroid levels should be. Taking a pill a day to manage your thyroid isnt a big deal, but getting the baseline level is.

For right now focus on eating all your favorite foods as much as you can with what you've already been thru. During and after rads, your sense of taste and ability to swallow may make eating difficult for a while, so eat now. You probably will want to begin focusing on your intake right now to help speed your recovery. Dont worry about gaining a couple pounds, you will probably be like most of us and lose weight during your treatments. When a person has cancer they burn up calories at an increased rate. During treatments and recovery you will want to boost your intake, even now you need to help your body recover so try to take in more calories. During rads and for at least the first year afterwards, you will need a minimum of 2500 calories and 48-64 oz of water daily. More (like 3000 or 3500 calories) will only help make rads easier. Doctors frown on a patient losing weight even if they have lots to lose. During rads isnt the right time for dieting! You may not be able to eat very well right after surgery but definitely try to have all your favorites now.

Another tip is to not think too far ahead. Take it day by day. Nobody can predict how the future will turn out. Try to avoid worrying about things you have no control over and focus on what is within your grasp... your intake, pain levels, etc. By constantly thinking ahead, it only creates more unneeded stress making everything harder than it has to be. I know this isnt easy as all people are always concerned about their unknown futures. Depression and anxiety are common with OC patients (many of their caregivers too). If you feel the need for anxiety meds, get them! Just think of it as another tool to get you thru some hard times.

Anyone who offers their assistance, tell them when the time comes you will let them know what they can do to help. Make sure to write everyones name down and contact info for later in case you need someone else to give them a call or text. There are many small things you could need help with during and after rads. Over the years working on the forum, Ive seen most people genuinely want to help but many dont know what they can do so dont be shy if you need help... ask.

I could go on and on with tiny little tips. But Ive probably already given you too much to think about. I want you to avoid the pitfalls that many patients run into. Read thru posts and also on the main OCF pages to educate yourself about your illness. An informed patient is a much better advocate for themselves. Best wishes with everything!!!

Best wishes!!!

Sorry for your mothers troubles, but 69 is considered young these days, minus any other illnesses, and some are doing treatments at a longer age in select patients. Another thing is often mentioned is to get surgery fit, light walking and such, and after treatment when so is advisable.

Good luck

Luc, I am 69 and have had oral cancer three times with radiation therapy last time, 2014. Still going strong. We're all different but age is not a HUGE factor here. I seem to be pretty average age-wise in my local support group. Christine's advice helped me get through radiation and other than that I walk a lot. This forum will be a big help.

Best wishes

Thankyou so much for your response ... Saw mum today in hospital had her neck dissection operation was so sad to see her that way.. I was crying wen I left the hospital it's just so hard not to think of death... But gotta be strong xxxx

Luc, (here in the US) most treatment facilities offer other services to help patients and caregivers. Ask the staff where your mother is treated at what therapy options are available. It would help you both to speak with a therapist who is experienced with cancer patients.

I know its difficult putting up a strong front around your mother. Its not easy seeing someone you love go thru cancer diagnosis, treatment, recovery and then to have a recurrence on top of everything they already went thru. Has your mother been given a terminal diagnosis? There are many here who have undergone several rounds of oral cancer and survived (myself included), they have gone on to live fulfilling lives. With so many medical advances, today a cancer diagnosis or recurrence is not necessarily a death sentence.

Stop back often and read to help educate yourself about oral cancer. An informed patient and caregiver make for better advocates for the patient. Hang in there and do your best to think positive. Remember, you found our group and we understand where you are coming from. As a caregiver make sure you take some time for yourself too.

Thankyou again for all the information... Mum is at home now recovering from her operation ...we are a pretty strong family so im sure we will get through it .. To answer your question no she hasn't been told it's terminal so we still pray all goes well ....she is going to the doctors to get staples out on Thursday then I guess we are waiting to get results back from the operation ... Can u tell me what the results are all about? Is it to find out how many nodes were cancerous? Spread? In 5 weeks she begins her radio treatment ... bless everyone xx

Yes, it sounds like your mother will get a review of how the surgery went and what they have planned next for her. You will be surprised at how well shes doing in a few weeks.

During recovery try to get your mother to eat all her favorite foods as during rads her sense of taste will change, swallowing may be difficult, and she could have mouth sores. She could require a feeding tube for her sustenance. During her next 5 weeks push her to take in at least 2500 calories and 48-64 oz of water every single day. If she is on the thin side push to get even more like 3000 calories a day. I cant stress enough how vitally important intake is during rads and recovery. It must be your single most important task to monitor. Next is her pain management so make sure to relay everything (no matter how minor it seems) to her medical team.

Best wishes!!!


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