Lymph node cancer positive p16

Posted by kahoun1 @kahoun1, Mar 23 4:06pm

My husband was diagnosed with positive p16 lymph node cancer of the neck approximately one week ago. The next step is a PET scan to determine if the cancer has spread.

We are not able to get the PET scan scheduled for two full weeks. Is this normal? Seems to me time is of the essence.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

@kahoun1 That's a very difficult diagnosis to hear. Do you know the stage of the cancer and the kind of cancer?
It's good to know that you are by your husband's side and advocating for him.

When I was diagnosed with recurrent endometrial cancer at Mayo Clinic in Rochester, MN a PET/MRI scan was ordered at Mayo Clinic It was scheduled about 2 weeks ahead. I've been told that unlike CT scans that can be scheduled quickly - because there are more CT scanners available for use-that it can take a few weeks to get on the schedule for PET or MRI. You might call or message (does your husband have a patient portal?) your husband's oncologist and ask this question. If you are close to the clinic where the PET scan is located so that you and your husband could get there quickly you could ask if there is a list in case there is a cancellation.

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In my area it can take several weeks for a rush pet scan. Longer, if it's a simple followup. Same for MRIs while CT scans are available much more quickly .
Sometimes they might be available sooner in large city a little further away from you.
But while I understand your concern and that 2 weeks seems a long time when you just learned you have a diagnosis like this , but its really not that far out
in the long run , big picture . Thats a normal feeling , in the face of this, to want action immediately. Have you checked with your doctor about the delay?

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Thank you for your responses. The delay we are being told is that it is a widely used machine. He is on a waiting list as well. PET scan is scheduled fir Thursday.

On Friday we meet with the doctor to discuss the results of PET scan as well as treatment.

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@kahoun1, I moved your discussion and questions to the Head & Neck Cancer support group here: https://connect.mayoclinic.org/group/head-neck-cancer/

I'm also tagging several members like @brad78 @stephenrfleury @shielashepperd @sepdvm @frankbc @jano and many others who have experience with P16 positive cancer of the head and neck region.

@kahoun1, did your husband have the PET scan as planned yesterday? And the discussion with the oncologist today? What is the diagnosis and plan? How are you doing?

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It seems like it takes 4 to 6 weeks for a PET scan. Luckily, the results are generally pretty cut and dried. For me, 3 plus years of clean scans. Remember, you'll be getting regular scans for next 5 years. I'm not sure the tension completely goes away from them.

Good luck!

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@kahoun1

Thank you for your responses. The delay we are being told is that it is a widely used machine. He is on a waiting list as well. PET scan is scheduled fir Thursday.

On Friday we meet with the doctor to discuss the results of PET scan as well as treatment.

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@kalhoun1. Did your husband have the PET scan yesterday (Thursday)? And did you meet with his doctor today to discuss the results and a plan?

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Please don't rush into anything. We thought we had to move fast and just get it out via surgery before exploring other options. Had wr talked to the radiation oncologist and not just the surgeon things might have been done differently. Ask questions. Find out the options and what results can be expected with each. You have to be your own advocate and sometimes you have to be pushy.

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Reading below it appears you might have had the PET and meeting just this week. That's great. Luckily things moved fast for me but my wife and I have learned that you have to push sometimes. For example she needed a biopsy on something and they scheduled us locally in 2 months. So we pushed them to search the network and we would travel. So they did and we had an appt in 3 days. I'm certainly not an expert on this stuff but I learned soon that cancer is about timing in most cases. I'm going to say also that it's important to get ready for the mental battle. I feel like that's where a lot of my battle has been. It's not just for the one who is diagnosed but for the caretakers as well. Personally we are praying folks and have a large network of supporters constantly praying and sending us good vibes. Again, I'm not an expert at this but I'm always willing to just talk and lend an ear. And if I have any supporting thoughts I'll be sure to share them.

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