HPV BOT Stage 4, 3 month post treatment scan

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HPV BOT Stage 4, 3 month post treatment scan

by Njmae on Fri Feb 10, 2017 10:58 PM

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I am flipping out a bit. I had my 3 month CT scan and PET/CT scan this week. Got a call today that the ENT wants to see me Monday after the Tumor board meets. Original Tumor and lymph nodes are resolved but there is some uptake on other side of tongue. She said no hypermetabolic uptake - is there another kind? Anyway, the report said it could be sequalae to the treatment. Any comments? Calming words would be appreciated, but only truthful ones. This is my fifth cancer and I have about had it. Can this indeed ne nothing?

RE: HPV BOT Stage 4, 3 month post treatment scan

by Sdurnell on Sat Feb 11, 2017 01:05 AM

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Calming words (I hope) to the rescue.

First of all, 3 months, while it's fairly standard practice, can be too early to scan because of false positives.  My radiation oncologist always waits 4 months for the initial PET for that reason.  "Sequalae to the treatment" just means caused by or incidental to the treatment, which means the CT was done too early. 

Example:  My radiation oncologist always scheduled my scans for morning then met with me after lunch to review them.  So one day there was a glow on my PET, indicating metabolic activity high in my throat, which a radiologist, given my history, might well have interpreted as cancer.  But my RO knew from our discussion that it was from a throat dilation I'd had earlier that month, so nothing to worry about.  I feel fortunate that he never made me wait for a report.  

So that's how this can be nothing.  And I certainly hope it is!

Susan

RE: HPV BOT Stage 4, 3 month post treatment scan

by Sdurnell on Sat Feb 11, 2017 01:09 AM

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On Feb 11, 2017 1:05 AM Sdurnell wrote:

Calming words (I hope) to the rescue.

First of all, 3 months, while it's fairly standard practice, can be too early to scan because of false positives.  My radiation oncologist always waits 4 months for the initial PET for that reason.  "Sequalae to the treatment" just means caused by or incidental to the treatment, which means the CT was done too early. 

Example:  My radiation oncologist always scheduled my scans for morning then met with me after lunch to review them.  So one day there was a glow on my PET, indicating metabolic activity high in my throat, which a radiologist, given my history, might well have interpreted as cancer.  But my RO knew from our discussion that it was from a throat dilation I'd had earlier that month, so nothing to worry about.  I feel fortunate that he never made me wait for a report.  

So that's how this can be nothing.  And I certainly hope it is!

Susan

That's an advantage of having a radiation oncologist, rather than an ENT, order the scans.  The RO can read them him/herself, while the ENT has to wait for the radiologist to read them.  

I asked my RO why I was also paying a radiologist, and he basically told me two heads are better than one.

Plus I got same-day reports.

AND the tumor board is going to look at it as well, which will include your other doctors I assume, so there will be other opinions as well as just the ENT to digest the information on the scan and its report.

Best of luck to you.

Susan

RE: HPV BOT Stage 4, 3 month post treatment scan

by Njmae on Sat Feb 11, 2017 02:58 AM

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Susan, Thank you very much. My RO did order the scans and I have an appointment with him after the ENT doctor. I always seem to get these calls on a Friday. Furthermore, I had been more optimistic lately, despite the fact of five cancers. I made it through the treatment without a feeding tube, losing about 15 pounds. I can eat just about everything at this point and feel quite well. Dry mouth is bothersome. But I was nauseated for 7 weeks of the radiation and two chemos. No remedy to be found. It's amazing I only lost 15 pounds. The thought of having to endure more treatment is terrifying. I am trying not to assume the worst, but it is very difficult. I know that three month scans can be misleading. I hope I can be reassured by the doctors. When I had the breast cancers, my followup mammograms were read immediately, which is the way it should be done for all these cancer tests. Thanks again. Mae

RE: HPV BOT Stage 4, 3 month post treatment scan

by Sdurnell on Sun Feb 12, 2017 09:28 AM

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Mae,

Optimism is good, and it's justified with this cancer, even at later stages.  (They are in the process of restaging H&N cancer so perhaps one day soon it will be more in line with other types.)

Great job losing only 15 #!  I lost 36, even though I got a tube halfway through radiation.  And I had no chemo and 2 weeks less radiation than you did.  I kept my feeding tube for more than a year, and had a terrible time (and very little sympathy, despite being emaciated) putting any weight back on.  So I'm impressed with how well you are doing!

And since optimism is your attitude of choice, I'll tell you that I looked at each scan as an opportunity, so I never feared them.  Either they were going to be negative (calls for a party) or they would be positive, in which case we found out right away and could get at it.  Good, timely news either way.

Wishing you all the best,

Susan

RE: HPV BOT Stage 4, 3 month post treatment scan

by Njmae on Mon Feb 13, 2017 10:49 PM

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Had my appointments with the ENT doctor and the RO this morning. The areas on the PET which lit up were on the tongue as opposed to the BOT. I was scoped and they examined my tongue. Said everything looked fine. The original BOT Tumor and lymph node are indeed resolved. Don't know why the tongue lit up (it was a "6" on the scale. They believe it might be inflammation. Also I have been doing a lot of tongue exercises and that can also cause increased uptake. Who knew. I am getting an MRI on Wednesday and will see the ENT next Monday. Neither doctor seemed concerned that this was a tumor. I am relieved, but know that uncertainties are a part of my life. I was told I will see either the ENT or RO every month for the next several months. I believe there will be another PET after 3 months. Seems like decent vigilance. Thank you!

RE: HPV BOT Stage 4, 3 month post treatment scan

by Sdurnell on Thu Feb 16, 2017 06:55 AM

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That sounds reasonable, as well as reassuring.  False positives at this early stage are not uncommon.  Depending on where they are, they can often be explained, like yours can.

So, best of luck in the coming months, and that includes NED designations--no evidence of disease.

Susan

RE: HPV BOT Stage 4, 3 month post treatment scan

by KyGal_KY on Fri Feb 17, 2017 07:22 PM

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When my pet scan came back showing something on the opposite side of my tongue from where the cancer was I ended up having a second biospy done -- it was yeast causing the false positive!!

RE: HPV BOT Stage 4, 3 month post treatment scan

by Njmae on Fri Feb 17, 2017 09:14 PM

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Thanks - that is encouraging. Today I had to have an ultrasound for a thyroid nodule. It was seen on the scans last summer and the doctors were no concerned. It is smaller now but since it was still there, I guess more tests were in order. In the last ten days, I have had a CT scan, a PET-CT, an MRI and an ultrasound. I have about had it. The nodule was 1 cm but I have don't know that size means anything. If I have yet another cancer, I am not sure if I can handle it. But I do appreciate your reply. Sorry to be a big whiner. I always have to wait over the weekend for test results. Thanks a lot.

RE: HPV BOT Stage 4, 3 month post treatment scan (update)

by Njmae on Mon Feb 20, 2017 06:28 PM

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Since the PET lit up on the other side of my tongue, I had an MRI last week. While we're at it, let's throw in an ultrasound on that thyroid nodule too. It was hard to be positive. Another cancer would make 6! Appointment this morning. MRI shows all clear. Tongue probably lit up due to treatment. Thyroid nodule is a cyst. No urgency on that. He did mention a slight uptake in the original tumor but it was very faint. Apparently this is not unusual. So I am very relieved. These phone calls, appointments and tests really put me through the emotional wringer. Seems like there is no life other that cancer treatment or its aftermath. Now, onward. Thanks you to everyone who read and responded. You are a helpful, caring group. Mae
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