NPC recurrence?

yo23

I had early-stage NPC in 2009 and had radiation and chemo. I had extensive scans till 5-6 years post treatment but not lately. I have been having mild headaches for a month now. I forced them to do an MRI for the H&N. It showed an increased nonenhancing low T1 signal intensity in clivus. The report mentions that it can be due to radiation and not likely a recurrence, but suggests getting a CT of the skull base. 

1. Can the clivus issue be related to rnpc, without any other apparent symptom?

2. What are the symptoms of recurrence in NPC or how is it usually detected? I tried searching this but didn't find many resources online. My doctors say to not worry about it, but I always have the fear of recurrence and relate everything with it. 

 

The MRI also shows bilateral air cell fluid in mastoid cells. I had an ear tube surgery for the right ear in 2019. Now, it's bilateral fluid and my ENT suggested that they might have to put ear tubes again and I might have to do this surgery again and again forever. 

3. Is it normal to have ear tubes put in and persistent ear infections as a late side effect? I didn't have any ear issues in 9 years post treatment. 

 

Thanks,

Yo

wbcgaruss

Hello Yo And Welcome To The Forum

I can't answer a lot of your questions, especially on the ear tubes. We have a saying on here "It's not cancer till they say it's cancer" meaning that all the testing is done and a biopsy performed. So even if you did push a little they did get you an MRI which sounds like it did not show anything remarkable so they are listening to you and working with you and want to make sure you are not having any recurrence issues so that is good. It sounds like you have a good medical term there watching over you. I personally can't say enough good things about my medical teams and nurses and everyone involved in my treatment from top to bottom they are stellar folks. I see they are recommending a CT Scan. That is what I and many others on here usually got done when we were suspected to have cancer. I have had cancer 3 times and what my ENT would do is scope me, that is putting the visual scope up my nose to view all the area down to my throat area. This may not apply in your case but I would imagine you have had it done already. They usually feel for lumps and feel around your neck area and lymph nodes. Then if something obvious or suspicious was seen or maybe not but the ENT may still not be comfortable with a situation he then orders a CT Scan with Dye. This will show up I believe any cancer or tumor or suspect area. In my last case, it was in my lymph node and I had gone in complaining of a sore neck and the CT scan showed obvious cancer or he was pretty sure. Next, if they find something like that they send you for a biopsy to verify that the suspect area is cancer or not and if it is they identify what kind it is as it determines treatment protocol. Then if you have an area or tumor that is cancer as seen on a CT scan and certified by a biopsy they send you for a PET scan which is a whole-body scan or as it is sometimes called "Eyes to Thighs Scan" to see if the cancer has metastasized anywhere else in the body and I was very Blessed as all my cancers were localized to the areas they were in and had not gone anywhere else in my body. So I would let your mind be at ease and Get the CT Scan they are offering and I assume they are going to use dye and if they did not mention it I  would ask them if the dye will be used with the scan. I think what they use attracts to cancer and is easy to see problems. It probably is due to old radiation as that can cause problems years out but the CT Scan will check and verify one way or the other and you can put your mind at ease. I think each time I had a scan of the whole head and neck area but my problems were a little different so you may want to ask about making sure they are covering enough area. So I am going to tell you to not worry or think about it too much and just get your scan set up but I have been there with the many others on here it's on your mind and there is worry and concern there you just have to limit it and not let it overtake you. Also, I figured what I had I had and no amount of worry would help it. As the Bible says "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own". I pray always but when specific issues come up I focus more on them and look to the Bible for comfort and strength. I can sincerely say that I am only still here by the Grace of God and all he provided. I hope some of what I have said helps you and if you have any questions feel free and hopefully, someone on here with more knowledge than I have will post and be able to help out.

Wishing You The Best-Take Care-God Bless-Russ

 

yo23

wbcgaruss said:

Hello Yo And Welcome To The Forum

I can't answer a lot of your questions, especially on the ear tubes. We have a saying on here "It's not cancer till they say it's cancer" meaning that all the testing is done and a biopsy performed. So even if you did push a little they did get you an MRI which sounds like it did not show anything remarkable so they are listening to you and working with you and want to make sure you are not having any recurrence issues so that is good. It sounds like you have a good medical term there watching over you. I personally can't say enough good things about my medical teams and nurses and everyone involved in my treatment from top to bottom they are stellar folks. I see they are recommending a CT Scan. That is what I and many others on here usually got done when we were suspected to have cancer. I have had cancer 3 times and what my ENT would do is scope me, that is putting the visual scope up my nose to view all the area down to my throat area. This may not apply in your case but I would imagine you have had it done already. They usually feel for lumps and feel around your neck area and lymph nodes. Then if something obvious or suspicious was seen or maybe not but the ENT may still not be comfortable with a situation he then orders a CT Scan with Dye. This will show up I believe any cancer or tumor or suspect area. In my last case, it was in my lymph node and I had gone in complaining of a sore neck and the CT scan showed obvious cancer or he was pretty sure. Next, if they find something like that they send you for a biopsy to verify that the suspect area is cancer or not and if it is they identify what kind it is as it determines treatment protocol. Then if you have an area or tumor that is cancer as seen on a CT scan and certified by a biopsy they send you for a PET scan which is a whole-body scan or as it is sometimes called "Eyes to Thighs Scan" to see if the cancer has metastasized anywhere else in the body and I was very Blessed as all my cancers were localized to the areas they were in and had not gone anywhere else in my body. So I would let your mind be at ease and Get the CT Scan they are offering and I assume they are going to use dye and if they did not mention it I  would ask them if the dye will be used with the scan. I think what they use attracts to cancer and is easy to see problems. It probably is due to old radiation as that can cause problems years out but the CT Scan will check and verify one way or the other and you can put your mind at ease. I think each time I had a scan of the whole head and neck area but my problems were a little different so you may want to ask about making sure they are covering enough area. So I am going to tell you to not worry or think about it too much and just get your scan set up but I have been there with the many others on here it's on your mind and there is worry and concern there you just have to limit it and not let it overtake you. Also, I figured what I had I had and no amount of worry would help it. As the Bible says "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own". I pray always but when specific issues come up I focus more on them and look to the Bible for comfort and strength. I can sincerely say that I am only still here by the Grace of God and all he provided. I hope some of what I have said helps you and if you have any questions feel free and hopefully, someone on here with more knowledge than I have will post and be able to help out.

Wishing You The Best-Take Care-God Bless-Russ

 

Thanks Russ

Thanks Russ, that helped a lot. They have ordered a CT without contrast. I have scheduled it already. I only had a video appointment with the ENT till now. She asked me to come for in-person visit after the CT to check the ears and do a visual scope of the nose as you mentioned. 

There are too many scares. I also had an MRI for pelvis recently. Everyone (family and friends) asks me to forget about it, but I can't help but link everything to it. Trying to not overthink and just go through all the scans. 

motorcycleguy

yo23,

I had NPC, which was caused by Epstein Barr (holdover from an earlier case of Mononucleosis ... probably from when I was a teenager).

During a blood test, my Oncologist has an Epstein Barr marker she checks, which indicates possible Cancer activity may recur.

I don't know if your NPC was Epstein Barr (or HPV) based. But, there may be a marker in a blood test - for both of them.

Ask an Oncologist. If it works for you, it would be a fairly easy test.

Obviously, your CT scan is another test - which should let you know. (The blood test info may help you detect things earlier in the future, though.)

I hope you're OK!

MG

Ag123

Hey there

My dad had NCP. He's about 6 months short of 5 years. No signs of recurrences as far as his CT scans are concerned, but we constantly get reminders too and think about "what ifs". 

 

Good for you for doing that scan. At least you have an idea now. I don't know much about your CT scans versus MRI at this point. but I would feel reassured by the radiologist's comment (especially if that radiologist reports back to a cancer treatment or surveillance center) and your ENT's input that it's likely due to radiation effects. 

MJG1

Ear Pain

My husband also had ear pain start some time after treatments ended.  Unfortunatly, it has now developed into a recurrance.  I've learned that ear pain with no infection or tooth issue is not a good sign.   If you have this issue don't let up until they do as many scans as you can get them to do.  Best of luck!