girlcat36
05-06-2007, 10:00 PM
I am being treated for tonsil cancer and my tumor was caused by the HPV virus and I think the word needs to get out that HPV not only causes cervical cancer but also tonsil cancer!!! I wish I had this info a year ago. I am female, 41, and healthy(non-smoker, occasional drinker) besides this diagnosis.
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mskubic
05-08-2007, 03:26 PM
I know it is also linked to esophageal cancer. I don't have EC but I ave HPV and after finding out I had it I did research and found this out.
mskubic
05-08-2007, 03:28 PM
girlcat36
I forgot to wish you well and a quick recovery. how are you doing?
I forgot to wish you well and a quick recovery. how are you doing?
furtiva
05-08-2007, 03:32 PM
wow, girlcat, that's very disturbing. Which strain of HPV causes cancer of tonsils? Did you remove them? How are you dealing with it? What symptoms did you have?
Are you taking anything for strengthing the immune system?
best wishes
Are you taking anything for strengthing the immune system?
best wishes
girlcat41
05-11-2007, 11:18 AM
I am not sure which strain caused my tumor. My tonsils were removed 3-1-2007. My Tumor was stage 2. The prognosis is 99% cure, with treatment. However the treatment is quite aggressive. I began radiation on both sides of my neck on 4-18; this will continue for 7 weeks, 5 days a week. I had a high dose of Chemo administered on 4-17, and will have 2 more doses before my treatment ends June 6. I had a feeding tube placed on 4-30, because the doctors anticipate I will not be able to swallow during the last few weeks. Despite this, I am doing well, and am out and about in Boston everyday(I have come to Dana Farber for treatment ),and I go home every weekend --about 1 hour away. My only symptom prior to my tonsillectomy was ONE enlarged tonsil and fatigue. My doctors will not allow supplements to strengthen the immune system because it could make the radiation less effective. Remember-sometimes what we take to help our healthy cells can also strengthen unhealthy, cancerous cells.
Master Yoda
05-15-2007, 06:26 PM
Doctors say there is no way to test men for high risk hpv. I wonder if they could do some sort of scraping or sample from someones throat. I don't see why not. Anyone hear of any new developments for testing men/woman?
girlcat41
05-19-2007, 08:49 AM
Throat scraping or swabbing sounds like a possibility, it works for other viruses/bacteria.
Staar80
05-26-2007, 12:07 AM
i have had so many problems the past year, but have b=never posted on this particular board.
please read some of my other posts, as the story is way too long to re-tell.
i had biopsy done in november of the back of my mouth/top of my throat area. it came back as hyperplastic squamous mucosa.
i dr. suggested HIV, and another HPV, the biopsy showed no evidence of HIV or HPV, accoeding to the ENT.
i ave tested neg. with HIV out to 10 months, my glands are swollen, fevers, rash.
any similarities?
please read some of my other posts, as the story is way too long to re-tell.
i had biopsy done in november of the back of my mouth/top of my throat area. it came back as hyperplastic squamous mucosa.
i dr. suggested HIV, and another HPV, the biopsy showed no evidence of HIV or HPV, accoeding to the ENT.
i ave tested neg. with HIV out to 10 months, my glands are swollen, fevers, rash.
any similarities?
FromSqueaky
05-26-2007, 08:15 PM
It sounds logical for a men to have a test for HPV in their throat and work. I'm guessing since men show no signs and have no complictaions from having HPV in their bady that the test won't work. If they never have any signs or flare ups then there is nothing to run a test on.
girlcat36
05-28-2007, 09:08 AM
Staar80----I had this for three years before finally undergoing tonsillectomy Mar.1. My only symptoms were one enlarged tonsil, and fatigue. I had my blood tested for all types of diseases, all negative. I had a CAT scan June 2006, which showed swelling but NOT the tumor. ( My Drs. at Dana Farber now tell me that a CAT scan will NOT always show a tumor, and I relied on that CAT scan, delaying my tonsillectomy!). I believe that my ENT was probably unaware of the HPV link, so never thuoght to test or ask! I had no fevers or rashes. My tonsil even looked normal, but just real big. They would feel it every so often and say it doesn't feel like a malignancy. There was a 2% chance this could be a malignancy, and I felt confident that it wasn't. Anyway, the prognosis is good and I have my last radiation treatment on June 6. That'll be a day to celebrate!
girlcat36
05-28-2007, 09:20 AM
Staar I did just read some of your posts I forgot; I also got blood blister type things on my tonsil, and the back of my throat, sometimes during the three years before the tonsil was removed. Wonder if that was a symptom of the HPV in my throat?
Staar80
05-28-2007, 09:33 AM
when did they actually figure out it was cancerous? after the tonsillectomy?
they kept telling me there was no evidence of HIV or HPV, but my gyno in turn said it is hard to identify HPV sometimes. my glands under my chin have been swollen for 10 months now. and i am still suffering through HIV tests, when the CDC sayd 6 months is conclusive. i am going to switch ENT's i think because this guy (who i do feel seems to be good) is at the point where he says there is nothing he can do -after biopsy and tonsillectomy. it all seems to have settled down, but had never improved.
did your CBC's ever show anything off witht he cancer?
they kept telling me there was no evidence of HIV or HPV, but my gyno in turn said it is hard to identify HPV sometimes. my glands under my chin have been swollen for 10 months now. and i am still suffering through HIV tests, when the CDC sayd 6 months is conclusive. i am going to switch ENT's i think because this guy (who i do feel seems to be good) is at the point where he says there is nothing he can do -after biopsy and tonsillectomy. it all seems to have settled down, but had never improved.
did your CBC's ever show anything off witht he cancer?
martja007
06-02-2007, 07:45 AM
hi, iam worried too. Having about a month ,funny feeling in my throat-like a lump when swalloving.Tried 3 diffrent antibioticum-the last ones helped,but it came back. I was diagnosed with HPV 16,18-had a cervix operation. What if it moved into my tonsils now? Also today i have noticed, there is a small 5mm fleshy lump on one of my tonsils. please help. m.:confused:
FromSqueaky
06-02-2007, 02:11 PM
They swab your throat and send it off to the lab to see if there is HPV in the throat. It's a simple test. They do it at my OBGYN's off and one other that I know of. I don't know if all doctors are aware that HPV can be found in the throat so I don't know who all offers the test.
girlcat36
06-03-2007, 12:32 PM
The tumor was discovered during tonsillectomy, it was actually in the tonsil and starting to spread. All bloodwork I had done over the course of three years was all within normal ranges. Big symptom--fatigue. My throat rarely got sore, but I did feel something when I swallowed, but I thought it was just the swollen tonsil.
Staar80
06-03-2007, 12:35 PM
before the tonsils were removed, did u have any scans of the area?
girlcat36
06-04-2007, 01:25 PM
One year ago ( June 2006) I had a CAT scan which showed an enlarged tonsil, and my ENT reported No Evidence of Malignancy, diagnosis was a Cryptic Tonsil. I relied heavily on this report, and took my sweet time arranging surgery; finally having tonsillectomy March 2007. My oncologist informed me that a CAT scan will show enlargement, but NOT malignancies. I had no idea, and only wish I had known the limitations of the CAT scan. The scan that shows tumor activity is the PET scan, which I had 2 weeks after my tumor was removed.
Vividangel1984
06-05-2007, 07:43 PM
Wow this concerns me quite a bit. I'm guessing you have the cancer causing strain of HPV? I have swollen tonsils but I still figure its from my mono. I do have HPV but the low risk kind. I have a question? Do you have any sort of genital hpv? Like high risk hpv or low risk? I don't think low risk hpv would cause cancer in the throat. i know that I don't have high risk. So maybe my swollen tonsils are caused by my mono? I also suffer from acid reflux and I'm 24. Always been scared of esophagual cancer and throat cancer. And I have never heard of a test to check for oral hpv. Does this test for the low risk or high risk kind?
girlcat36
06-05-2007, 08:27 PM
I was unaware of testing positive for any HPV, if I was tested somehow over the past 22 years I did not receive the info. I saw my OBGYN a few days ago, he said we all have it. We think it is strain 16, not positive. If you know you have low-risk HPV, I wouldn't be concerned re:tonsils. Especially since BOTH are swollen; remember I had ONE swollen tonsil. But just be careful in the future re:STD. Anyone could be a carrier of any strain. They need to test for oral HPV!
Vividangel1984
06-05-2007, 08:42 PM
Well, I am considering getting my tonsils removed. But I still think that was from my mono. Hpv is a very tricky desease. Men are just carriers and they would never know they had it. Unless if they get symptoms like warts. So I guess oral sex is just about as risky as anything else. I'm glad you found out and hope you have a speedy recovery. May god bless you and remember..hpv does not define you!
girlcat36
06-06-2007, 11:25 PM
I think you are fine, but if you have an ENT willing to remove your tonsils --go for it. I was SOOOOO afraid to have that surgery but I recovered superfast, and DID NOT have a lot of pain!!!
I completed my treatments today: last radiation, last chemo, and still eating solid food ( So I didn't need that feeding tube they put in a month ago.) Also I never had to hit the heavy pain meds --just ibuprofen sometimes. I actually went rock climbing yesterday for the first time in my life! I don't think I was supposed to be able to during my treatment. Anyway--point is, don't be afraid and turn it over to God. Thats what I did, and my drs. and nurses are astounded at my lack of side effects.
I completed my treatments today: last radiation, last chemo, and still eating solid food ( So I didn't need that feeding tube they put in a month ago.) Also I never had to hit the heavy pain meds --just ibuprofen sometimes. I actually went rock climbing yesterday for the first time in my life! I don't think I was supposed to be able to during my treatment. Anyway--point is, don't be afraid and turn it over to God. Thats what I did, and my drs. and nurses are astounded at my lack of side effects.
Vividangel1984
06-11-2007, 02:56 AM
I'm just wondering about the hpv swab they do in your throat. Can it test for low risk hpv or just high risk? I know that I gave the person oral sex that gave me genital warts. My tonsils were enlarged before that I think. I'm not sure..but I would like to know. So I don't infect anyone when I give them oral sex. I don't have any warts around my mouth or anything but my tonsils look horrid and I want to make sure its not from hpv.
FromSqueaky
06-11-2007, 12:46 PM
Since there is no test for men to see if they have it unless they have an out break I think the same goes for the throat. I think men and women need to have an outbreak in their throat before they can test it for HPV. I don't know how intense the test is for the throat. I just know they swab it and send it off for tests
Vividangel1984
06-30-2007, 12:06 AM
hmmm it does sound like more of a throat culture. I wouldn't really rely on it to test for hpv. Girlcat, my ENT told me that one of my tonsils is bigger than the other. But the other one is a little swollen too I believe. I'm not sure cause I don't really know what normal tonsils should look like. I had abnormal tonsils for so long that I forgot. I know that I got sick with mono and also had tonsilittis a couple of times. What reason I don't know. I am thinking about getting my tonsils removed but via laser. Cause I heard it was much less painful and less bleeding occurs. I do have the "lump in throat" sensation and its mainly from post nasal drip and my acid reflux. I am concerned about high risk hpv because I won't lie I have given oral sex before. But my question is, I know this condition is rare but would a PET scan or biopsy be accurate in detecting cancer? So then maybe I can just have my tonsils removed via laser. Or should I just get them removed the old fashion way and then look for a tumour. I don't suspect that I have anything but I want to be on the safe side. It concerns me how you had this tumour in you for over 2 years and the only side effect you had was fatigue? Also you never had cancer in your cervix? I would assume that someone who had oral cancer from a high risk strain of hpv would also have it in their cervix as well. Does your other tonsil look normal? I am very sensitive to anesthesia and that is my main concern for have a tonsiloctomy. but let me know how you feel about the biopsy or PET scan cause I would rather do that then get my tonsils removed the old fashion way.
girlcat36
07-01-2007, 07:28 AM
I had my tonsils removed the old fashioned way and I, too, react badly to anesthesia(This was part of the reason my tonsillectomy was delayed). If you have a good anesthesiologist you will be fine with it, there are many things they can give you to avoid the side effects. I was ok after surgery, and did not have the terrible pain during recovery that everyone talks about. I started eating solid food 5 days after surgery, and could swallow pills right after surgery. So don't worry so much about the surgery. The PET scan is the gold standard for detecting tumors, but they are extremely expensive and so are usually reserved for those who already have a tumor to check for metasteses. So I don't think your doctor will order one. My other tonsil was completely normal looking but they removed it anyway only to find out it was badly infected. They don't usally biopsy a tonsil--they just remove it. Remember---I had a CAT scan 9 months before my surgery and the report was NO Evidence of Malignancy. I regret that I relied so heavily on this report. My oncologist told me that CAT scans DO NOT pick up malignancies; I wish I had been better informed. At your age I'm sure your doctor does not suspect cancer, but if he is willing to take out your tonsils, have it done to put your mind at rest. About 18 years ago I had severe cevical dysplasia--a precurser to cervical cancer, which was treated with cryosurgery. No one told me I had HPV.
Vividangel1984
07-01-2007, 12:30 PM
Thank you for the information Girlcat, right now I am thinking about surgery. It would probably be better then getting my tonsils lasered off since they have to knock me out anyways. But we will see.
girlcat36
07-01-2007, 03:30 PM
DON"T listen to the tonsillectomy horror stories; you'll be fine.