Hi

Not sure if I’m posting this in the correct place but I was just looking for maybe a few options of people in similar positions as myself. I’ve been home from hospital for five days now after my surgery to have roughly 30% of the tongue removed as well as lymph nodes in my neck. My pathology came back with very positive results in terms of them having removed all of the cancer in the tongue with a good margin and of the 55 lymph nodes removed and tested zero traces of cancer were found. However here comes my issue, due to the kind of cancer I had and the nature of it the surgeons and oncologist have offered me radiotherapy as they cannot 100% say I’m cancer free. They have left the radiotherapy decision up to me. At first I was all for it but when they start to explain side effects and long term effects of radiotherapy it becomes a question of Do I do it to make sure I’m all clear and live with the side effects or do I proceed without it and continue improving day by day but have the worry at the back of my mind is there still some Cancer cells in there.

Thank you in advance to anyone who offers an opinion or their experiences 😄

Craig

Welcome to OCF, Craig! You certainly have one difficult decision to make! In the years Ive been a member of OCF, Ive seen others in the same situation. Some have only had surgery while others opted to get rads. Im sorry but I do not remember which members were in that situation or what the long term outcome was. This type of decision carries with it worrying and anxiety no matter what choice you make. You will still worry and think "what if" which has no positive outcome.

One thing that may help you decide is if your cancer location was base of tongue or tonsil areas that was caused by HPV+. Patients who have their cancer caused by HPV generally fare better and have fewer recurrences. Talk this over with your doc if this fits your situation. You should also consider your age, the younger you are the easier it can be on you. Another thing that may help is if you would go for a second opinion prior to deciding. If you are able to get into a comprehensive cancer center (CCC) where a team based approach puts all the specialists on the same page that would enable you to hear what the whole team recommends.

Reading thru the main OCF section may help you understand everything a little better and make it easier to make your decision. Ive included a link to that and also to the lists of top hospitals and CCCs.

Main OCF Site, Understanding section

List of Cancer Centers

US News Best Hospitals List

Craig,

It sounds like the oral tongue, and not base of tongue, which is a different area (oropharynx) and mostly HPV related, which treatment may be different than oral tongue cancer, besides it being a certain stage or tumor grade.

My tumor grade and staging in the oropharynx was T1M2bM0, which is Stage 4.

I’m not sure what stage or tumor grade your cancer is or was, but it sound like N0M0, but tumor size is unknown to me, and if there were any negative prognostic factors, which it doesn’t sound like it, but you can check with your surgeon, surgical report, and biopsy. The surgical margins can be a factor too.

In addition to the above, you can check the 2017 NCCN Head and Neck Cancer Guidelines for suggested measures of care and testing, for your type cancer and grade, if you like, which may coincide what your doctors are saying, and largely followed as a guideline.

You can ask your surgeon why they put radiation on the table as an option? I can guess a few, but maybe you would like to hear what the doctor says, besides not knowing 100%. I listened to my doctors or went elsewhere, and usually asked all my doctors their opinions.

I’ve known oral cancer patients that just had surgery, others surgery and radiation, and even surgery and chemoradiation depending on their cancer stage, and prognastic measures, so it’s difficult to say.

This is 2016 NCCN Head and Neck Cancer Guidelines

https://oralcancerfoundation.org/wp-content/uploads/2016/09/head-and-neck.pdf

Good luck

Hello,
If its HPV and as you state in your post, I would carefully study the short term and long term side efects of radiation. MDs tend to gloss over the side effects. Read the posts and decide for your self.

People can only give their experiences here, nobody is a professional. What I can say from my experience: I was NOT told about all the ramifications of my treatment and its side effects. I did not understand what I was getting into. I had small children and I was scared. That was a bad basis for making a treatment decision. I've lived to regret it. And the thing is, I'm never sure whether the key word in that sentence is 'lived' or 'regret' ... but that's where I am. If I had it to do again, I wouldn't do it ... but then, if I had it to do again, it would mean yet another recurrence, and that'd be a whole 'nother ball game. There's just no knowing. I think I was given bad advice given the level of my cancer, and then bad follow-up care. I think others get better care. But radiation stays with you, no matter what.

Hi, I am going through radiation currently after having a small tumor removed from the right side of my tongue in February. It was squamous cell carcinoma but don't know the stage. Radiation of the tongue and right side lymph nodes was recommended because it was very close to a nerve. My doctor presented my case to a tumor board and they all agreed that radiation was indicated. I agreed because I wanted to be more safe than sorry. I think you should look at all the side effects so you know what you are signing up for. I am going into my sixth week of radiation so almost done! Pain is a given so ask for pain meds and oral lidocaine wash, don't try to be a hero. They tell you you can keep working but with my former job, there would have been no way I could have done it, take the time off and see to your needs. Nutrition, this is tricky, you will not be able to eat regularly, nor will anything taste palatable as your treatment progresses. Find a good high protein liquid meal supplement, you will rely on that. Also Jamba Juice Berry Workout drink is my after treatment treat, not that it tastes like anything but it is high protein and doesn't taste bad. You will loose weight but force yourself to drink. Your mouth will get dry, get some Biotene products, especially toothpaste, regular toothpaste will irritate your mouth. A cream called Miaderm will help with skin irritation, google it or buy on Amazon. My biggest problem has been the thick mucous that developes in the back of the throat, dryness, and the loss of taste. There is no guarantee that taste buds will recover any time soon or ever. I can't tell you whether you should do it or not, only you can decide. Educate yourself about possible short term and long term side effects to make your decision one you can live with. I will say my father had an oral cancer, had surgery, and refused radiation, he then had a recurrence several years later. Good luck to you!

Hi Denise,

I'm starting Week 2 of radiation tomorrow. I'm already finding that my saliva consistency is changing. I was expecting the dry mouth but instead my saliva is thick and it feels as if my tongue is swelling more! I thought my tongue was supposed to shrink?!
I'm bummed as I've been eating all foods orally for a few weeks now. I did have the PEG tube inserted at surgery back in Feb. and I'm going to have to start using that more now. I feel as if I'm going 2 steps forward, one step back. However, that's what oncology is all about, yes?

You sound very positive- good for you!!