HPV SCC Tonsil - Recurrence?

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HPV SCC Tonsil - Recurrence?

by DC-Wolverine on Sat Sep 09, 2017 07:45 PM

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Hello All,

I was treated with surgery (tonsillectomy and radical neck dissection on right side to remove affected lymph nodes) plus 6 weeks of radiation on right-side only at John Hopkins in Baltimore, finishing treatment about 20 months ago in January 2016.

All follow-ups have been clean. But this past week I had an MRI to make sure the left side was clear, and the doctor called yesterday and side they found an "area of concern" on the right side just above the treatment area. They want me to come in for a scope to take a closer look. I just had a scope 6-7 weeks ago at my 18-month follow-up, and a CT scan in April - neither of which turned up anything.

I'm 47 with two kids, and just started my own business a year ago, and have been living as if this cancer was behind me, given the high survival rates these days. I am reeling a bit right now.

Has anyone else had a recurrence? If so, what was your treatment protocol for the recurrence and how did it go? Or has anyone had a false alarm show up on an MRI that later turned out to be nothing?

I'd also appreciate any recent articles on the subject. I read a piece from 2011 and the survival data on recurrences did not look very good!

Thanks and God Bless,

Marc

RE: HPV SCC Tonsil - Recurrence?

by Sdurnell on Mon Sep 11, 2017 06:02 AM

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Marc,

So sorry to hear that you've had this scare.  

I have never had an MRI, so I'm not sure what that kind of scan can show, but I did have a PET that, had it been initially read by a radiologist and not my radiation oncologist, would have been suspicious at least.  I saw the RO on the afternoon of the scan, even before the radiologist had looked at it, and he knew that it was evidence of a throat dilation I'd had, not cancer.  I'd guess that your scan could be something like that, a false positive caused by something else--or even nothing else.

But if not, it sounds like whatever it is has been caught very early and that's a good thing, as you can get on it right away.

I didn't have a recurrence, but I have known people on these sites who have.  One had a second course of radiation, during which he had fewer side effects.  Others have surgery, and still others are being treated with new immunotherapy drugs.

The main thing I would recommend, if you should have a recurrence, is that you get another opinion, and if possible from a major cancer center.  That would be the time to call for the big guns.  Treatment for our disease has changed a lot, and there are a number of clinical trials out there as well.  At a top center you will have access to doctors who treat this often and know of all the trials.

Best of luck to you.

Susan

RE: HPV SCC Tonsil - Recurrence?

by JohnnyO on Mon Sep 11, 2017 09:16 PM

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Hey Marc -

MRIs commonly give false positives of soft-tissue changes caused by radiation treatment, so that's what I would expect it to be, especially since you were treated at Hopkins.  See this article:  http://www.ascopost.com/News/36315

The literature is really strange.  I recently read a 2016 article that says the 3-year survival rate of head/neck SCC after treatment intended to cure is 30%-50%.  The source?  A 2007 article.  When I was treated in 2012, my doc gave me a 90+% chance for cure, so I wouldn't worry about a 2011 article. 

Also, if you insist on reading articles, make sure they don't conflate local recurrence with distal (metatstatic) recurrence.  The former (which is what you would have if anything) is treatable to cure, I believe.  It's the metastatic recurrences that are more difficult to treat.

Keep us posted!

RE: HPV SCC Tonsil - Recurrence?

by AnnJohn on Mon Sep 11, 2017 10:15 PM

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Marc:  John's second CT with contrast came up with a little glow on the opposite side of his radiation.  After further investigation, they blamed the fact that since he works so hard with the opposite side of this throat to swallow and chew, the extra work was just aggravating and overworking the opposite side more. 

RE: HPV SCC Tonsil - Recurrence?

by DC-Wolverine on Tue Sep 12, 2017 01:20 PM

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Thanks, Susan, Johnny and Ann!

They finally posted the formal test result to my online portal.

Here is the specific language:

"Asymmetric soft tissue prominence enhancement involving in the right lateral mucosa of the inferior nasopharynx with posterior medial extension just across
midline. Inferior extension of enhancement along the lateral pharyngeal wall to the level of the oropharynx . Findings are concerning for residual tumor."

There's more, but that's the sentence that gives me a stomach ache. I don't really understand any of it other than that last sentence.

Marc

RE: HPV SCC Tonsil - Recurrence?

by JohnnyO on Tue Sep 12, 2017 02:20 PM

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Hey Marc -

FWIW, my wife found a lump beneath her breast a couple of weeks ago, and she saw her ob/gyn, who is usually dismissive of symptoms, who said he was "concerned."  When my wife panicked, he said, "Anytime we find a lump it's concerning."  Turned out to be a cyst, so don't let the verbiage freak you out (easier said than done).

The rest of the result just says that your film shows a piece of tissue that wouldn't normally be there in the area where your primary tumor was.  If they finished the analysis, they would have continued, "but findings are also consistent with a tissue irregularity caused by RT."  But that last part is not concerning, so no reason to report it.  They could have said, "likely residual tumor," but MRI's are unable to determine that.  

When are you going to be seen again?

RE: HPV SCC Tonsil - Recurrence?

by Sdurnell on Wed Sep 13, 2017 06:43 AM

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I'm thinking they might want to do a PET/CT--when is the last time you had one?  This would show metabolic activity, which can be a sign of cancer but can also have other causes.  Combining the scans and the information each can give might give the best picture.

I'm not sure why some doctors order MRIs.  I never had one.  But your results sound as if an MRI will show tissue locations.

And your findings are concerning, considering your history.  But they could reflect something else entirely going on.  And as you've seen, many have had false positive scans.  Other things, like scar tissue, do sometimes occur in radiated areas.  

Actually, an MRI might have been better for me, because I had my throat close up completely and no one could see it on PET or CT or swallow study.  I was on that blasted tube for many months due to my inability to swallow anything at all.  That blasted tube that saved my life.

You can ease your mind by calling your doctor and finding out what the other language means.  Or maybe taking or sending it to your primary care doctor for a translation.  Don't just stew about it!

Susan

RE: HPV SCC Tonsil - Recurrence?

by DC-Wolverine on Wed Sep 13, 2017 04:34 PM

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Hi Susan,

My last CT scan was in April, endoscopy in July - neither showed anything. My next CT scan is scheduled for October. The resident doctor who shared the MRI results with me did make the point that an MRI and CT scan are not apples-to-apples comparisons.

Trying to make an appointment for next week - the oncologist and surgeon's staffs are checking their schedules and asking me to coordinate between the two, rather than simply calling each other.

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