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#201012 10-25-2021 06:07 AM
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I am feeling so so stressed I just feel sick in my gut. I’ve had a small red spot on the roof of my mouth for 3 wks now, cancer side. And a little lump on the top of my scalp for a month longer. I had my regular 6 month checkup 2 weeks ago. I see rads oncologist and ENT at the same time. They took a photo of both and ENT made a f/u appt with me in 4 wks to check. My partner does a weekly mouth check for me and last night there were 2 more red spots on cancer side, plus 1 more red spot on other side (all on roof of mouth). I know I have to wait for 2 more wks for the appt but omg I don’t want to have cancer again. (Had breast cancer twice, oral cancer once.) I decided to check in here because of my stress level.

Other than that I’m doing really well. I can eat almost anything, including a lot of but not all breads - with more liquids than I used to need. I never thought I’d be able to eat almost back to normal again, and I’m very happy about that. Just stressed about red spots now though.


Mouth/tongue cancer dx Feb 2018.
Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection.
Tumour 2.5 cm, 0.8 cm deep.
Histologic grade G3 Poorly differentiated.
3 of 25 lymph nodes involved max size 0.6 cm.
pT2pN2b (stage 4a)
Chemo Radiation June / July 2018. Completed 35 rads, 2 of the 3 chemos.
embishop #201021 10-29-2021 12:51 PM
Joined: Mar 2018
Posts: 71
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You may reach out to a company called Naveris, who has a blood test for post treatment HPV related head and neck cancer patients, if that applies to you. The test is called NavDx and It may be free, regardless of your insurance. But things could change, so I would ask them to explain how the billing works. I think it would have to be prescribed by a doctor, who has supporting information from your treatments.
I have taken the test, and they sent someone to my home to take the sample.


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
CM57 #201129 01-11-2022 08:30 AM
Joined: May 2018
Posts: 29
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Thank you for that info. My cancer was not HPV related.


Mouth/tongue cancer dx Feb 2018.
Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection.
Tumour 2.5 cm, 0.8 cm deep.
Histologic grade G3 Poorly differentiated.
3 of 25 lymph nodes involved max size 0.6 cm.
pT2pN2b (stage 4a)
Chemo Radiation June / July 2018. Completed 35 rads, 2 of the 3 chemos.
embishop #201130 01-11-2022 08:35 AM
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Tomorrow will be 9 weeks since biopsy. I got results today. No cancer shows in tissue but atypia shows, not enough cells to make a diagnosis, needed a deeper biopsy, he did another biopsy, now I wait 4-6 weeks again. The waiting time is just ridiculous. And then if I do have cancer again apart from how long the delay will already have been how much longer for any treatment???


Mouth/tongue cancer dx Feb 2018.
Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection.
Tumour 2.5 cm, 0.8 cm deep.
Histologic grade G3 Poorly differentiated.
3 of 25 lymph nodes involved max size 0.6 cm.
pT2pN2b (stage 4a)
Chemo Radiation June / July 2018. Completed 35 rads, 2 of the 3 chemos.
embishop #201133 01-11-2022 10:03 AM
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Sorry to hear that you are dealing with all these delays which cascade into stress. While I am a fan of Canada’s providing medical to their population, unlike the US where everything is private pay or paid by insurances that have to be bought, I hear from many Canadian patients about long waits for treatments, and laboratory work. The systems capacity is definitely overloaded.

I can’t imagine a patient knowing that they have a cancer and then being put into a queue for treatment knowing it is continuing to get worse while they are waiting. But worse are the American patients I hear from without insurance, too young to be in the Medicare system, making enough money to not qualify for Medicaid but not making enough to pay for treatments, and already diagnosed so excluded from any insurance coverage by the pre existing condition exemption of coverage is they could muster the money to buy insurance. A no mans land with very few options.

While they did get a result after that long wait of atypical cells, luckily that is not yet cancer, (which it may never become, think positive) and not even dysplasia, which would indicate a movement to cancer. Atypical cells could be something other than precancerous, and it’s a nebulous category that doesn’t tell you anything… there is no usable information your nine weeks of waiting yielded. Frustrating. But if you consider the positive in that finding, it was not cancer or even dysplasia which would have been clearly detectable and named. So your worst fears have not been realized at this point in time.

This is obviously superficial and not invasive. I’m wondering why they just didn’t laser it off. That would be a normal procedure here. Removal while small and non invasive is always the safe route to take. And vaporizing it with a laser is not an invasive procedure to go through, though the area would be sore for a week or two while it healed in by secondary intent.

I’m not good at shutting my own mind off about things unknown. So I’ve got no good advice other than to stay busy with other things to occupy your thoughts. Perhaps others here have some good relaxation techniques that they might pass on. Given my personality, I’d probably occupy some of my time calling the lab every day to see if they know anything, in the mistaken belief that they would get it done early just to get rid of me……


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #201138 01-12-2022 02:03 PM
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Thank you for your reply and all that info, Brian. I’m generally in favour of our Cdn medical system as I’ve heard many horror stories about people not being able to get treatment because they can’t afford it, but in this case the waiting time is just unconscionable. At this point I’m resigned to waiting. Not happy about it, but i can’t do anything to speed up the process. I also had a gastroscopy on Dec 22nd (different surgeon) and I have a Feb 7th appt already booked to get those results (from 3 biopsies taken during that procedure). 4-6 weeks is our current wait time for biopsy results. Office closures over Christmas extended that to 9 weeks for the Nov 10th biopsy. But you make a very good point - I do not currently have another cancer diagnosis! I will be very happy when biopsy results confirm that.


Mouth/tongue cancer dx Feb 2018.
Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection.
Tumour 2.5 cm, 0.8 cm deep.
Histologic grade G3 Poorly differentiated.
3 of 25 lymph nodes involved max size 0.6 cm.
pT2pN2b (stage 4a)
Chemo Radiation June / July 2018. Completed 35 rads, 2 of the 3 chemos.

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