1. < Head & Neck Cancer

Tonsil Cancer from HPV

Posted by sapphire1158 @sapphire1158, Aug 13, 2023

I discovered I had a tumor on my right tonsil in April and it had moved to one lymph node - I had robotic surgery at mayo and had both tonsils removed - all pathology showed all cancer removed from tonsil after surgery -I had the affected Lymph node along w 40 other lymph nodes removed - thank goodness none of the other lymph nodes were positive for cancer.
I have had 2 blood tests since surgery for HPV both negative I will repeat in 2 months - have had another Ct all good— the 2nd PET scan showed something near surgery site— my surgeon said all ok - just inflammation- am worried about that -
I am not doing radiation or chemotherapy unless something changes-I keep reading that most people have radiation
Just wondering if others have had this w no radiation- one more question- my taste buds r really messed up my mouth is very dry - it’s only been a little over 4 months - just interested to hear other’s experiences- thank you

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sapphire1158 | @sapphire1158 | Mar 17 6:36pm
In reply to @brad78 "I have to admit a bit thrown off by no chemo radiation....I thought that was customary..." + (show)
@brad78

I have to admit a bit thrown off by no chemo radiation....I thought that was customary so really looking forward to my follow ups. Reading above I'm assuming all good and you never had to do radiation?

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I have not had radiation or chemo -🙏🏻🙏🏻was right decision

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1 reply
brad78 | @brad78 | Mar 17 6:48pm
In reply to @sapphire1158 "I have not had radiation or chemo -🙏🏻🙏🏻was right decision" + (show)
@sapphire1158

I have not had radiation or chemo -🙏🏻🙏🏻was right decision

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I'm with ya 100%

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sapphire1158 | @sapphire1158 | Mar 17 7:20pm
In reply to @slmoore0626 "Actually I did 20 rounds of radiation and two of chemo. I was on a 2x..." + (show)
@slmoore0626

Actually I did 20 rounds of radiation and two of chemo. I was on a 2x day radiation for two weeks and one chemo each week. I went into it hoping for no chemo or radiation but I had a tonsillectomy in May which found a tumor and then TORS in July to remove any residual. Also a lymph node dissection of 18 nodes with two metastatic. Stage 2. Fortunately the cancer was not outside the two lymph nodes My surgeon and oncologist encouraged that protocol because there is a ten percent false positive or false negative in the NavDX. I was at a very good teaching/research hospital in NC. I will be forever grateful to them!

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Hope you are doing well now🙏🏻
I have decided I have to trust my mayo drs - hopefully no radiation was right decision- I have the blood test done every 3 months for 2 years - w physical checkups
Let us know how u r doing

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2 replies
slmoore0626 | @slmoore0626 | Mar 17 8:30pm
In reply to @sapphire1158 "Hope you are doing well now🙏🏻 I have decided I have to trust my mayo drs..." + (show)
@sapphire1158

Hope you are doing well now🙏🏻
I have decided I have to trust my mayo drs - hopefully no radiation was right decision- I have the blood test done every 3 months for 2 years - w physical checkups
Let us know how u r doing

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I’m doing well! Have a six month checkup tomorrow!! Thank you!

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sapphire1158 | @sapphire1158 | Mar 17 8:43pm

Good luck w your checkup!!!!!

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Mar 18 12:44pm
In reply to @sapphire1158 "Hope you are doing well now🙏🏻 I have decided I have to trust my mayo drs..." + (show)
@sapphire1158

Hope you are doing well now🙏🏻
I have decided I have to trust my mayo drs - hopefully no radiation was right decision- I have the blood test done every 3 months for 2 years - w physical checkups
Let us know how u r doing

Jump to this post

It is good to hear that the medical community is beginning to realize radiotherapy may not always be the best route considering the damage it can do to the patient. I am always saddened by the damage done to those of us who went willingly into the radiation vault on a daily basis for weeks on end. Doctors believe that radiation will kill the cancer. Guess what, death will kill the cancer as well but it's not a good alternative.
We are finally seeing excellent results from certain drugs, tests which can find cancer markers, and just better knowledge and awareness of alternative cancer treatments in the medical community. Time will tell but I wouldn't wish radiotherapy to the head and neck, a very vulnerable location of the body, on anyone if it can be avoided. Thank you those who have had the courage to go with alternatives. You help to perhaps save future generations from needless torture.

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1 reply
brad78 | @brad78 | Mar 18 4:21pm
In reply to @hrhwilliam "It is good to hear that the medical community is beginning to realize radiotherapy may not..." + (show)
@hrhwilliam

It is good to hear that the medical community is beginning to realize radiotherapy may not always be the best route considering the damage it can do to the patient. I am always saddened by the damage done to those of us who went willingly into the radiation vault on a daily basis for weeks on end. Doctors believe that radiation will kill the cancer. Guess what, death will kill the cancer as well but it's not a good alternative.
We are finally seeing excellent results from certain drugs, tests which can find cancer markers, and just better knowledge and awareness of alternative cancer treatments in the medical community. Time will tell but I wouldn't wish radiotherapy to the head and neck, a very vulnerable location of the body, on anyone if it can be avoided. Thank you those who have had the courage to go with alternatives. You help to perhaps save future generations from needless torture.

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Very scary indeed. Just took blood for my first Navdx test today and it shipped. So now I get to enjoy a week or two of uncertainty lol.
I would be curious to know what precisely this test tells you outside of no cancer at that specific time. For example, if it comes back negative why would one assume it could be positive later? Error margin?
At the end of the day my doctor who has over 40 years experience and many, many patients like me gained my trust. Though the stakes are high, a choice had to be made. Fun fun lol

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2 replies
sapphire1158 | @sapphire1158 | Mar 18 5:08pm
In reply to @brad78 "Very scary indeed. Just took blood for my first Navdx test today and it shipped. So..." + (show)
@brad78

Very scary indeed. Just took blood for my first Navdx test today and it shipped. So now I get to enjoy a week or two of uncertainty lol.
I would be curious to know what precisely this test tells you outside of no cancer at that specific time. For example, if it comes back negative why would one assume it could be positive later? Error margin?
At the end of the day my doctor who has over 40 years experience and many, many patients like me gained my trust. Though the stakes are high, a choice had to be made. Fun fun lol

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All of your questions are r valid and excellent- will be asking my Dr when I see him in April!!
And- you - just keep “ knowing” ur test will be negative! I am gonna be doing the same

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Mar 18 9:05pm
In reply to @brad78 "Very scary indeed. Just took blood for my first Navdx test today and it shipped. So..." + (show)
@brad78

Very scary indeed. Just took blood for my first Navdx test today and it shipped. So now I get to enjoy a week or two of uncertainty lol.
I would be curious to know what precisely this test tells you outside of no cancer at that specific time. For example, if it comes back negative why would one assume it could be positive later? Error margin?
At the end of the day my doctor who has over 40 years experience and many, many patients like me gained my trust. Though the stakes are high, a choice had to be made. Fun fun lol

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It’s going to take a while to get used to the fact that everything most likely will be OK. Those first five years can make you think a common cold or sore throat is cancer. Every ache or pain is cancer. I guess we should just make the best of a second chance to live our best lives.

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2 replies
brad78 | @brad78 | Mar 18 9:12pm
In reply to @hrhwilliam "It’s going to take a while to get used to the fact that everything most likely..." + (show)
@hrhwilliam

It’s going to take a while to get used to the fact that everything most likely will be OK. Those first five years can make you think a common cold or sore throat is cancer. Every ache or pain is cancer. I guess we should just make the best of a second chance to live our best lives.

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@hrhwilliam you always seem to have the right words. Always appreciate reading your comments. Very uplifting and helpful.

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