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.
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.
Thank you for that info. My cancer was not HPV related.
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???
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……
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.
Saw my ENT surgeon today. The 2nd biopsy shows moderate dysplasia. He’s going to do an excisional biopsy on that, under general, probably take 6 weeks for surgery to get booked. He’s also going to biopsy a white patch where my tongue graft meets up with my tongue, and the lesion on the top of my head about which he said he cannot say it’s not basal cell carcinoma. It’s definitely bigger than in the fall. That’s the least of my stress, though, I care that no cancer be found in the excisional biopsy, and no cancer in the new area to be biopsied. I’ve been feeling a bit down today but hey it’s still not cancer. Tests and waiting just take too long though.
The good news is dysplasia isn’t cancer yet but cellular movement towards it. Not all dysplasia becomes malignant. And if he is going to remove it soon, that means before it has a chance to become something more, it will be gone. So for sure, I like you, get wigged out when my scans or biopsy comes back as something less than normal. It takes me days to get my attitude in line with the reality that it coukd be something bad, but isn’t yet ot at least is undetermined with certainty. I think that is part of survivorship. We are always waiting for the other shoe to drop. We remember how bad the first dance with this was.
Basal cell cancers, I’m past thinking about. They are not the deadly things that squamous cell cancers can be. After a lifetime in the sun surfing and more, at my current age they keep appearing, on my scalp, my face, my hands. Getting them removed when I see a new one is an annual event at the skin surgeons, and always a complete and minor, successful procedure.
Know that these are going to be dealt with and believe that you will be again free of these things before they become something dangerous and hard to deal with. What you are feeling is not only normal, but what we all feel no matter how small, or how many times we have to face it. This will be in your rear view mirror in another month. Life will go on, and your nerves will fall back into line. B
Thank you Brian. Yes the crap thing is always being reminded of the first go around because swallowing and speaking issues don’t let me forget. I’ve had breast cancer 2x but don’t think about that nearly as often as oral cancer. And oral cancer surgery and treatment was awful. 1 day at a time though I will get through this and hopefully without cancer again.
Not cancer! I had surgery last Friday and my surgeon called me yesterday to say no cancer showed up! The thing he removed ended up being severe dysplasia, so I gather on the way, but NOT cancer! I am very very very happy and relieved 😃
The thing on my head was a basal cell cancer, but that’s no biggie at all.
What a reminder of the roller coaster of cancer. I send out my best healing thoughts to everybody on the roller coaster.
We are all really happy for this good catch and quick resolution. This is the roller coaster as you aptly describe it we all live on. Here’s hoping it is a long time before the next precipitous drop or sharp turn. Be well. B