Good evening

I'm new to chat sites and mouth cancer so I am very glad to have happened upon this site to gain so many insights as to other people's experiences as I go about my treatment. I was diagnosed in Darwin at the end of October last year - for my birthday I say - as I was just about to book an idyllic holiday to the Margaret River Wine Festival in Western Australia to celebrate my 42nd birthday WHEN ALL OF A SUDDEN...a change of plan. I decided to undertake surgery in Sydney and despite the tiniest of margins my T3 tumour is now gone gone gone. I have been blessed with a wonderful medical team and support from my family, work and friends in beautiful Darwin. I have had a forearm freeflap to replace one third of my tongue, a temporary trachy, lymph and salivary glands and 10 teeth removed. I have 7 radiotherapy zaps and 2 chemo sessions to go and while I'm at it I'm having accupuncture, Chinese herbal remedies, homeopathy and massage. I thought I might as well go beserk if I was going to give up smoking! I want to get as much info on this illness as I can without going overboard and I am especially interested in seeing how other women of my age are doing with cancer of the tongue as I'm told we're rare birds!

Cheers

Jane

Hi Jane,

I was informed of my prognosis with tongue cancer last year. I was 47 and have just turned 48. Even at my age this is rare. I went through a number of challenges starting with a General Practitioner who placed me on antibiotics for a month to an ENT specialist who
didn't bother with a PET Scan until after my 1st surgery. He informed me and my family the cancer was gone but since the PET Scan was clouded I under went 50% tongue removal and lymphnodes on the left side. The Pathologist report came back that my tongue showed not cancer which meant the second surgery was not necessary but it is worth it to have peace of mind. I to had a free flap from my arm. I had two lymphnodes affected but the Dr. as a standard removes 35.

I smoked on occassion, one cigarette every other month and rarely drank so I think this is what caused the Dr.'s to look at my sore as something other than cancer. I know my age and appearance also factored into the slow conclusion as well.

I had my surgery in August and completed Chemo and Radiation in mid November. I am starting to feel better. My mouth is still a bit sore and sensative from the treatments and I am attending range of motion therapy for my neck.

How are you doing? You sound great considering you are still in treatment.

Please stay in touch.

Best Regards,

Sandra R

Hello Jane and Sandra

Welcome to the MCF Online Support Group.

There is much information on the MCF website on complications related to treatment that you should be aware of so that you can avoid some of them like the 'radiation' caries and trismus that can occur and worsen without preventive measures. You will find these past messages on 'tongue exercises' of interest. You can search past discussions using the search facility for topics like 'oral hygiene' and 'speech' and 'eating' and more.

If you have any questions, just ask and someone with some experience will reply sooner or later.

Best wishes
Vinod

Thank you Vinod for your suggested reading, much appreciated.


Hey Sandra

I just let out a shriek that had my sister running out of the kitchen to see what had happened to me re:your second surgery!! A friend of mine who is male and 51 in Darwin had his mouth cancer misdiagnosed for 18 months in Brisbane. I find it's horrendous to hear this sort of stuff. Even if the after-effects of my surgery weren't such a fresh experience I'd have a little scream. My ex GP wanted to put me on antibiotics initially too and suggested that I make an appointment with an ENT who was attending my city in 3 weeks'time.

I was a great big smoker and drinker up until the past few months, so this is a whole new lifestyle change for me. I met a lady when I was shopping with my mother a couple of weeks ago and she had the surgery a year ago. I just assumed that she must have had the same smoking and drinking habits as me - WRONG! Much to do after this week to keep me with the best chance of beating it - a whole new immune system to build! 4 zaps to go!

Regards


Jane

Can I ask how you went to have 2 operations?

Jane,

I am much better now but yes it was quite the journey for me and my family. My first surgery was performed by the ENT who took a small portion of my tongue and reported clean margins. It took me a few weeks and I was back to work, no big deal. Then I had a follow up appointment and he asked me to get a PET SCAN as a routine measure. The SCAN came back clouded and showed molecular activity in my tongue and lymphnodes. He told me it was not acurate. Then the Oncologist told me that I needed more surgery and a look at my lymphnodes. Both had two completely different stories. I finally told the ENT I was going for a second opinion with a top surgeon at UCLA Medical Center. This is one of the top Head and Neck Cancer Medical Centers in the U.S. The best of the best took a look and said the PET Scan was clouded since it was taken after surgery so they suggested taking 50% of my tongue and a neck dissection to be absolutely sure. They also said that they may find nothing but it was my choice. I went with their opinion and had the surgery. I was in intensive care for 3 days and the hospital for 8 days. I recovered very well from the surgery but the first few days were difficult to say the least.

In the second surgery they did not find further cancer in my tongue but did find cancer in two lymphnodes. The lymphnodes were small but it was there. As a standard they remove 35 lymphnodes so I am currently going to physical therapy to improve my range of motion and a lymphnode message for better drainage.

I am greatful to UCLA and their team.

How about yourself. Did you have extensive surgery? I am feeling much better and am going back to work February 18th part time for two or three weeks and then full time.

Have a wonderful weekend and take care.

Sandra

P.S. If Dr. Vinod is reading. How long should sores or mouth irritations last after radiation and chemo? Does it vary from person to person? It has been 11 1/2 weeks and eventhough my mouth is much better it still has some sores. The Dr.'s have checked and say all is good/normal.

Hello Sandra

In a study (Long-term oral Candida colonization, mucositis and salivary function after head and neck radiotherapy. ) that followed the long-term effects of radiation therapy of head and neck malignancies on oral yeast colonization, mucositis and salivary function, examiner-rated mucositis and patient-rated xerostomia showed no significant recovery after 6 or 12 months. In this prospective study, 32 patients had radiation therapy of a malignancy of the head and neck. In all patients the salivary glands lay within the radiation field and the patients had at least five teeth. The first examination was performed after oral hygiene instruction and removal of questionable teeth before the start of radiotherapy. The following examinations were conducted after 3, 6, 9 and 12 months.

It would be interesting to hear from members of how long (in weeks) it took after the end of their radiotherapy for recover from their mucositis/mouth ulcers. Click here to take part in the poll.

Best wishes
Vinod

Dr. Vinod,

As always your expertise is appreciated.

At least I know this is normal.

Best Regards,

Sandra