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White pinhead nodule on left tonsil bed?

RogerRN43
Posts: 185
Joined: Sep 2011

I had a diagnostic left tonsillectomy to confirm primary back in late September, it healed and before rads started in October, I noticed this white tiny nodule on the bed. It's always been there, I looked today and it either hasn't changed or looks a little smaller. 3 weeks ago, I mentioned it to my RO and he said it's either scar tissue or the area is being treated with the most concentrated dose of rad so he wasn't concerned.

I've heard of larger white flat scabs that fall off, part of the normal tonsillectomy healing process, but it's been a few months now and I've never heard or googled anyone having a white nodule as scar tissue. I don't see my RO again until Jan 13. I have no appts with my ENT, and frankly I'm not sure they can do anything because I have completed the standard treatment for HNSCC.

Thoughts?

NJR
Posts: 82
Joined: Oct 2011

I had something like you describe on the connective tissue between my lower lip and gum that literally drove me nuts because it felt like an electric shock when something touched it. It lasted for weeks and weeks. Two different doctors looked at it and concluded that they didn't know what it was but suspected it was nothing more than a pimple who's content was turned solid by the radiation. They said it would probably disappear over time but it finally got the best of me and since I had a vial of lidocain and a syringe I did a field expedient surgery of my own. I don't recommend you do that of course because of the location and the fact that it bleed for an hour. I think they were right though, the core of it was as hard as a rock.

longtermsurvivor's picture
longtermsurvivor
Posts: 1763
Joined: Mar 2010

you are tough!

RogerRN43
Posts: 185
Joined: Sep 2011

At first it looked like a hard pimple, almost like bone, but now I think it looks soft and changed shape, smaller, like maybe it will just slough off on its own, I can see it's more like the end of a piece of rice and moves when I gag or cough. I wish I could reach it and pull it off, lol, but it's too deep.
Just part of my worrying as I had a diagnostic left tonsillectomy to look for the primary, not the more advanced TORS robotic surgery which would have gone deeper to get margins had they known it was the source, TORS not available in my city anyway.

Then again, I've heard of others who have tonsil primaries and don't have surgery at all and just go the chemorad route.

I just hope now that I've completed treatment, it's been responsive and eradicated.

I can still feel this half-sized pea hard lump where my affected left lymph was, it started out as half a golfball size.
Hoping it's just scar tissue and will continue to dissolve, or if not I won't need any type of neck dissection.

When do they usually do the first scan post treatment?

osmotar's picture
osmotar
Posts: 952
Joined: Jul 2011

I saw my chemo onco yesterday prior to my my next to last carboplatin infusion...since I will be done with rads & chemo next thursday, she has already scheduled my post pet scan for the end of March. She told me I will have a pet every three months for the first year.

Happy Holidays

Linda

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

My RO told me flat out, if you rush a scan, you will get a false positive. I am not having scans, but it seems most here wait 3-6 months for their first scans.

rozaroo
Posts: 667
Joined: Apr 2010

Dawn asked me to add my bit to this topic! I am from Northern Ontario & am 2 year's post treatment for base of tongue stage four B cancer! My first CT scan was given to me 3 month's post treatment. Head & neck patient's in Ontario do not qualify for pet/ct scan's! However, My oncologist advised me to have one at a year post treatment, so He made an appointment at my cost & It took place in Montreal Quebec! I lit up like a Christmas tree & this was a year post treatment, plus had to wait for another ct scan to compare. They saw nothing but my stomach ulcers lol. The cost for the scan was $2,400 but I will use it as a tax deduction. I tell you I am very impressed with the way the U.S has the equipment needed even if it doesn't alway's work the way it should lol. We have our government to blame for the cost of proper care here in Ontario! If you have any further question's I am willing to help!
Best of luck
Roz

RogerRN43
Posts: 185
Joined: Sep 2011

Thanks Roz for your post. So in Ontario, after 3 months, they just let you wait until you have symptoms again/recurrence and you're basically on your own? (unless you pay out of pocket)

Or do you mean Ontario HNC patients don't qualify for PETs, but you get followup CTs?

rozaroo
Posts: 667
Joined: Apr 2010

In Ontario Head & Neck patient's do not qualify for Pet/Ct scan's ! However, follow up with Ct scan's or MRI is standard! Depending on your Dr. I had mentioned to my oncologist that I had jaw pain so he did schedule an MRI in August! I am sure if you mention anything that is not normal they will follow up! Plus from what I was told it all depend's on how much radiation you were given. Also I am now on twice a year follow up appointment's with my oncologist! I am not a negative person but I seriously find this is not enough! It took me two year's to finally obtain my own family physician! I was registered with health care connect & no family physician would take me on. Here they pick & choose! It has been a struggle for me. I have a great Oncologist & I appreciate all that he has done for me! However, I wish more appointment's were available! You have to be your own advocate here & it
can be exhausting! I was able to secure my own physician but not through health care connect!

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