My dad had a checkup today after 45 days since his RT completion. He is still having ulceration on his tongue following RT and is having pain below his right ear. RO seems to be worried about the induration of node below ear and tongue but they want to wait for another 5 week (12 weeks from RT completion) to have a PET-MRI and review the situation.

For now, they have given him antibiotic and few other medicines. I am totally petrified and just hoping that all comes out clear but this wait is terrifying!

I hope the antibiotic and other meds your Dad was given have some positive effect and that everything turns out ok. I know the waiting is an indescribably difficult thing to endure. Until you know for sure, you have to keep switching from those negative thoughts to all the possibilities there are for a positive outcome. Anything you can do to keep busy with other things helps - like going outside, exercise, working, - anything that takes your concentration away some of the stress. I'm sure others will have suggestions or experiences that more closely resembles your Dad's experience, so try to think about all the good things that could happen and do come back here often to let us know what is happening with you and your Dad.

Eshwar, Im sorry to hear about your father. You have done an excellent job of helping him. Try to stay busy to keep your mind from worrying. If a PET was given with his current condition, it would be full of probably false positives. The doctor is right to wait for the scan. If there is an area of concern, is it possible to have it biopsied now? After going thru radiation, its hard to get the wounds to heal. Hoping its only scar tissue. Best wishes!

Agreed eshwar - the ulceration may take a while to heal mine definitely did - I have a tooth that was rubbing against the top of my tongue and because it was swollen it took a long while to heal. It wasn't an open sore but it was very painful, perhaps your dads immune system is low and his healing is slow because of it. You've done an excellent job, let time do what it has to. As for the ear I get occasional ear pain, jaw, swelling related. It's not constant but maybe your dad having had rads 2x is having a harder time of it. Take care.

Thanks Anne, Christine and Cheryl. Like Cheryl mentioned, my dad too seem to have molar rubbing against the tongue. For ear, I had already started antibiotic and he is much better today.

Uncertainty and the wait is depressing for all of us in the family. Dad usually does not give up easily but he started to cry today. Just hoping all will be right.

Hello, Eshwar.
I know it must be very difficult to witness your father's tears, especially if that's not typical. I'm sure he just feels so ill and the thought of some more bad news has just pushed him over the edge. Depression comes along with the territory and not only for the patients, but their caregivers, too. I know this is not as urgent given all that is going on, but has your father sought treatment for possible major depression? It might be worth speaking to him about taking some meds. Of course, they don't make everything "all better", but it may help him cope with the disease a little better.

I have the same question as Christine. Is a biopsy an option in the meantime, so as not to have to wait for a PET/CT? I found a mass in my neck 5 months after my surgery, had a CT with contrast that showed changes and they wanted to watch/wait. I couldn't take it emotionally and told him I wanted a biopsy. My doctor didn't hesitate to do one for me. Fortunately, 3 additonal nodes were benign.

As a side note, I still have occasional ear and maxilla pain that is referred from my tongue and I am just over 7 months post op, without adjuvant therapy. My point is that I have residual pain without having had to endure radiation and its side effects. So, given that your father is suffering from the radiation effects, I would think that some referred pain may be possible.

Wishing comfort for yor fater and family,
Kerri

Thanks Kerri. Biospy is not an option for now as RO is concerned about healing as it is just 7 weeks since last radiation dose. He want to wait for 3 months to be certain that it is not any radiation side-effect. I am just trying to console him by reminding him of previous time (he had same issue 2 years back, it took over 3-4 months for tongue ulcer to heal).

By the way, the antibiotic has relieved him of under ear pain.

Oh your poor dad, he's sick, tired, in pain, scared to death and probably thinks the pain means that he has fought for nothing. On top of that he probably thinks it is his job to provide for his family and to be the strong one and he just can't anymore because he is at the end of his tether.

Somehow you have to reassure him that he has not let you down, and his feelings and emotions (including his fear) are perfectly understandable. You can also be sure that if his under ear pain has responded to antibiotics then it probably is an infection and isn't caused by any cancer.

When I read about the ulcer, I was not surprised as radiation makes everything heal so slowly. I thought it was quite logical that he would still have sores and ulcers. Alex's sores actually kept developing after the radiation and I am sure he still had one when he went for the PET 12 weeks later.

You have been such an educated and caring support for your Dad and it is just a few more weeks to the PET. If you could just hold it together for just a few more weeks, and know that we are all rooting for you, your dad and your whole family.

Eshwar... maybe you can ask the dentist to file down the offending molar... mine did and it really helped... sorry your dad is upset... a recurrence is scary to begin with but then recovery being harder can scare you too. Remind him that he's gone through it twice... age, and double damage to the tissue takes longer to heal... good luck...

eshwar, still thinking about you. we share so many of the same fears with our dads.