My husband recently finished radiation and chemo treatment for a tumor on the base of his tongue that had spread to 2 lymph nodes. Eight weeks after treatment, his PET scan shows that although the tumor and lymph nodes are smaller, there is still activity in them. We had been hoping to hear that the cancer cells are gone. Is this result as ominous as it sounds to me? How long do the chemo and radiation continue to work on the cancer cells after treatment ends?
Jane

Welcome to OCF, Jane. Im very sorry to read about your husbands situation!

Our site is made up of oral cancer (OC) patients and caregivers who do not have medical backgrounds. We will do our best to help you with info and support.

Since you have been given the test results Im thinking you both have already reviewed the test results with your husbands doctor. What has your husbands doc said are the next steps? The most important thing here is to eliminate the cancer, all of it. A second opinion at a comprehensive cancer center would be a good plan.

Im sorry but Im unable to answer your question about how long rads continue to work after treatments are completed. This is something your husbands doc should be able to answer. Im guessing it varies with each patient just as each patient responds in their own unique way to medications, treatments, etc.

Best wishes with everything you both are dealing with.

Thank you for your response. We got the news from the research nurse today and will talk with the radiologist tomorrow. I've managed to keep it together and be strong for 6 months, but today I fell apart. As long as I had hope, I was ok, but now I don't know how to do this anymore.
Jane

Caregivers have a very difficult job!!! I dont think I could do what caregivers do. Juggling appointments, insurance, medications, the never ending side effects, plus your normal household duties, children, yard work all on top of (for most) holding a full time job with keeping a smile on your face is far more than I could imagine handling. Make sure you take some time just for you once in a while. Going out to lunch with a friend, going out to the movies, or even a walk around the block can do wonders in helping a caregiver to manage everything they have going on with their patient.

Im glad you will be able to ask the doc everything tomorrow. Ask about second opinions while there and see what they have to say if it would be something they would stand behind. A doc who doesnt support getting a second opinion may not always have the best interests of their patient in mind. At least thats how I look at it. I know you both have been thru so much already. Make sure you write a list of questions so you can remember everything to ask the doc. Ask the doc if you are allowed to record the appointment. If you have someone who is close to you and your husband, maybe they wouldnt mind tagging along to the appointment for an extra set of ears and to take notes of whats being discussed. Too often we stop listening after hearing bad news so this way you have a few ways to help remember everything that was discussed.

There is still hope! Im always someone who finds the bright spot in a dismal situation. Your husbands doc and medical team are on top of this. The tumor has shrunk so it might be able to be removed surgically. Some OC patients can get another round of rads but thats not usually ok'd so soon after finishing the original radiation treatments or in cases where the tumor is in the same location. The only scientifically proven ways to eliminate OC is the surgery, radiation with or without chemo. By itself chemo wont take care of eliminating the tumor. But, now the newer immunotherapy chemos have shown to be effective so they might be an option, at least its worth asking about. Keytruda (AKA Pembrolizumab) or Opdivo (AKA nivolumab) are the new immunotherapy chemos that work for select patients.

Please let us know how you make out tomorrow. Best wishes!!!

I was my husband’s caregiver for close to three years, from diagnosis to when he left us. It was not at all easy. Like Christine said, I had to keep track of all the appointments, his intake, any side effects, etc. I relied on this forum the whole time. There was, above all, what the patient himself would accept and what he would refuse to do. I picked my battles. I would not yield on hydration and nutrition, but I would let him decide what he would like to eat, for example, if he wanted a poached egg or just scrambled eggs. But whether he was going to have eggs was not up for discussion. When he drank his tea, he wanted four teaspoons of sugar. That was okey as long as he would drink it. He went to a therapist for a while, and then he said he had talked about everything and didn’t want to go again. That was all right too because it did not impact on the treatment of the cancer.

I made sure I knew what questions to ask the doctors and what information to give them so that they knew I was on the case and would give me good answers to my questions. I would never give up if I wasn’t satisfied. I would ask the question again and again.

I made a point of getting up one and a half hours before my husband because that was my ME TIME. I would have a leisurely breakfast and read the papers. I just enjoyed the time when there was no stress. The rest of the day we tried to pass our time in as “normal” a manner as we could manage. We watched TV together, talked (but never specificallyabout cancer) and read. My family doctor referred me to a therapist of my own so that I could talk about how I felt.

My main takeaway from the experience is to take it a day at a time. If he had a CAT scan, I would not worry about the results until I was actually sitting in the doctor’s office listening to the results. I focused on, if this is what things are going to be. then what is the next step for us. I looked to the future and set aside the past because it was pointless.

I hope this is helpful to you in some way. Please keep us posted and let us know how you’re getting on.

reluctant caregiver here!

one day at a time. it's all we can handle and some days, even that's too much.

last radiation treatment was Oct 4. similar cancer but worse than your husbands as mine had many lymph nodes involved. He is working a few full days a week but not up to 5 yet. Lays in bed the rest of the time but he did that before cancer.

Mine has another PET scan scheduled in April as doc isn't sure they got it all despite biopsy and PET scan in december. husband says they just want to make money so I"m not sure he will do another one.

He is getting the feeding tube removed soon but he ate pies (whole pies) to keep from losing weight so they would remove it. He's always looking for the short cut so not surprpising he went to that length.

Best wishes on this journey that no one would sign up for.

Today we saw the radiation oncologist and he showed us some of the pictures from the CT and PET scans. There is still some activity near the tumor site, but it is at a different location than the original hot spot, so he thought that might represent tissue damage from radiation rather than active tumor cells. The lymph nodes showed smaller spots of activity than the pre-treatment scan. The protocol for the research study he is in calls for scans at 2 months, but the doc said he likes to wait until 3 months after the end of treatment. He listened to our concerns and explained that it is just too soon to draw a conclusion.

Friday we have an appointment with the speech therapist who is in the same office as the ENT. We can ask for another opinion.

I feel much more hopeful today and am able to go on doing what needs to be done. Thanks for being there as a sounding board and for your thoughtful response. I was in a panic and didn't know what to do.

Jane

we were told that 2 months is too early as it will light up in areas of inflammation. they waited 2.5 months and there was still a little bit of red but they weren't the least bit concerned but ENT thought it looked bad so she did a biopsy. It came back clear.

It's all heavy duty stuff.

That's good to know and it confirms what we are hearing from the docs and therapists. On Friday, we saw the speech therapist and she said that 2 months is just too early to give clear results. She is going to talk with the ENT and get his analysis.

I appreciate all the emails of support. That helped get me through until we could hear additional interpretations from the clinical folks.

Jane