Just Diagnosed Squamous Cell Carcinoma of Neck with unknown primary
Comments
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Still waiting on our hpv results toocureitall66 said:Second path of base of tongue...
As we thought, the biopsy shows the base of the tongue to also be cancer. The ENT is assuming this is the primary site, but could not say for certain. He also mentioned the possibility of HPV. Wondering how long and at what point they will test this. Seems like it is an important factor to consider before starting treatment. According to what I've read on line, that if it is HPV involved, that the response to treatment seems to be better. Anyone told that? Next step is to go to U of M and get another opinion and probably stick with them for treatment. We are hoping they can get him in within a week. The ENT has already started the process. So now we're just waiting again. This is getting difficult in keeping him at ease and to decrease the anxiety. He (loved one) is worried it has or will travel somewhere else if it's not addressed quickly. He's also concerned if the tongue is the primary...
We were told being hpv positive was a good thing. They starte testing the biopsied mass for the presence of hpv last Tuesday. As of yesterday the results were still not in. I am anxiously awaiting our results as well. We were told that based on having cancer at the base of the tongue and the lymph nodes involved that they believed they had found the primary.0 -
The waiting...VivianLee5689 said:Still waiting on our hpv results too
We were told being hpv positive was a good thing. They starte testing the biopsied mass for the presence of hpv last Tuesday. As of yesterday the results were still not in. I am anxiously awaiting our results as well. We were told that based on having cancer at the base of the tongue and the lymph nodes involved that they believed they had found the primary.
The waiting is so hard during this process. That is interesting that you got the same opinion of the tongue being primary. Everything I read,(and I try not to necessarily hold everything I read on line to be accurate),but I found that if the neck was the noticed spot, it is usually secondary with the tongue being the primary. I hope this is all holds true and it is all within that area. Wondering if there has ever been a "different" primary with this kind of situation. So many questions.....so few answers. Frustrating, isn't it?!0 -
HPV+
OK...
As far as I know and have read, etc....
HPV can only be determined through biopsy (cell tissue)... My ENT diagnosed me and treated me (removed the tonsils)... SCC was suspected that first exam, and more than likely HPV derived as I was never a tobacco user.
I saw him on a Friday, tonsils came out on Monday...STGIII SCC from a quick biopsy that day. He sent the tissue out and two weeks later let me know that it was HPV+.
As for responding to treatment, yes, I have heard similar... But keep in mind, cancer is cancer. As for now I don't know of any lesser approved treatments if you have HPV derived cancer.
I know I certainly wouldn't want to take a lesser treatment at this time.
Anyways, those are my understandings....
I'm not trying to be negative or a positive mood buster... But any way you cut it, it's still cancer, the treatment is the same an it's rough, but doable.
BTW, my primary was the tonsils with a secondary lymphnode on the same side.
JG0 -
Waiting is excrutiating......cureitall66 said:The waiting...
The waiting is so hard during this process. That is interesting that you got the same opinion of the tongue being primary. Everything I read,(and I try not to necessarily hold everything I read on line to be accurate),but I found that if the neck was the noticed spot, it is usually secondary with the tongue being the primary. I hope this is all holds true and it is all within that area. Wondering if there has ever been a "different" primary with this kind of situation. So many questions.....so few answers. Frustrating, isn't it?!
I remember well....the cancer doesn't travel as fast as our imaginations tell us...thank god, and I remember every one here telling me to just hang on, that treatment will begin soon enough. Once begun it's whirlwind of never ending appointments....
p0 -
I had the same thing when I
I had the same thing when I was 25 and I had an enlarged lymph node in the neck which was removed and checked, It was the same squamous cell. I believe mine was stage II since it went from an unknown primary to a lymph node. Needless to say I survived with radiation treatment and it was tough but made it though with flying colors. I'm now 42 and had to go through it again because it showed up in my nasopharynx, so I had proton radiation this time and I am three years out from treatment. I've made it through twice so this cancer is highly treatable so please just put your faith in God because He has taken me through all of this and have been very blessed in the process!
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HPV SCC Contagious....
Does anyone know if the HPV SCC is contagious at any point?0 -
HPVcureitall66 said:HPV SCC Contagious....
Does anyone know if the HPV SCC is contagious at any point?
Studies show that around 80% of the general population have been exposed to HPV. There is no cure, but usually your body rids it within a few years, or at least to uneasurable levels....
As far as I understand, they haven't exactly pin pointed the mode of absolute transmission... It could be as simple as kissing.
Also, it appears that it might lie dormant within for years and or never manifest, or through stress, a weakened immune system, etc...become active and eventually cancer.
I haven't really heard of any concerns from my MD's on me passing it on to my wife... In fact most feel that it has cleared itself through treatment for the cancer..not sure.
There isn't any specific test for men that I'm aware, other than tissue biopsy of a suspect problem. Women can on some do have HPV checked as part of their annual pap smear exams (from my understanding).
As for passing on SCC, I don't think so....
HPV and SCC are two different diseases.... You can have HPV and never get cancer, and you can have SCC and not have HPV, and you can have HPV derived SCC.
JG0 -
Thanks for the info...Skiffin16 said:HPV
Studies show that around 80% of the general population have been exposed to HPV. There is no cure, but usually your body rids it within a few years, or at least to uneasurable levels....
As far as I understand, they haven't exactly pin pointed the mode of absolute transmission... It could be as simple as kissing.
Also, it appears that it might lie dormant within for years and or never manifest, or through stress, a weakened immune system, etc...become active and eventually cancer.
I haven't really heard of any concerns from my MD's on me passing it on to my wife... In fact most feel that it has cleared itself through treatment for the cancer..not sure.
There isn't any specific test for men that I'm aware, other than tissue biopsy of a suspect problem. Women can on some do have HPV checked as part of their annual pap smear exams (from my understanding).
As for passing on SCC, I don't think so....
HPV and SCC are two different diseases.... You can have HPV and never get cancer, and you can have SCC and not have HPV, and you can have HPV derived SCC.
JG
Yes, I figured the cancer would not be contagious, but wondering since the HPV that they have related is HPV 16+ is in fact contagious to others? I guess that may be a question to the Onocologist or MD?0 -
SCC unknown primarycureitall66 said:Thanks for the info...
Yes, I figured the cancer would not be contagious, but wondering since the HPV that they have related is HPV 16+ is in fact contagious to others? I guess that may be a question to the Onocologist or MD?
I was diagnosed SCC unknown primary two years and 4 months ago after finding a lump in my neck while shaving.
The lump was a swollen lymph node so I had a left neck dissection and tonsillectomy.
39 nodes were removed and only the was positive for cancer.
Pathology results were as good as can be expected and I had no rads or chemo. Two years and 4 months later I am doing great and feel better than I have since my twenties (I'm 41 now).
Tell your friend to stay positive and hope for the best. I have a very strong faith in God that I feel was the key for me but fear is a beast the we all must contend with. My mind raced with worst case scenarios at times but it is important to stay positive and believe that all will be well.
As far as the HPV thing goes, yes it is contagious but almost all of us are exposed to it at some point in our lives and only a very small few end up with cancer. For most folks it just runs its course and goes away and in my opinion is not worth worrying about.
I'll be praying for your friend!
Joel0 -
Definitely...cureitall66 said:Thanks for the info...
Yes, I figured the cancer would not be contagious, but wondering since the HPV that they have related is HPV 16+ is in fact contagious to others? I guess that may be a question to the Onocologist or MD?
See what they have to tell you...
JG0 -
well yeah...HPV is acureitall66 said:Thanks for the info...
Yes, I figured the cancer would not be contagious, but wondering since the HPV that they have related is HPV 16+ is in fact contagious to others? I guess that may be a question to the Onocologist or MD?
well yeah...HPV is a sexually-transmitted contagious virus.
that's why Gardasil vaccinations are important not just for girls, but boys too--every vaccinated person helps reduce the spread. my 20-year-old son signed up for vaccinations, bless him.0 -
Didn't mean to sound dumb about asking about it being contagiousblackswampboy said:well yeah...HPV is a
well yeah...HPV is a sexually-transmitted contagious virus.
that's why Gardasil vaccinations are important not just for girls, but boys too--every vaccinated person helps reduce the spread. my 20-year-old son signed up for vaccinations, bless him.
It's obvious that's how it came about(by being contagious). My question is it has possibly lied dormant for so long and something triggered it to become cancer at some point....so obviously anyone in close contact (sexually) would be exposed in someway...but what about a child just giving their dad a kiss... I guess I should have made myself more clear...my brain has just been rattled and I sometimes think everyone is thinking the same thing I am.0 -
Great idea on the vaccinations too....blackswampboy said:well yeah...HPV is a
well yeah...HPV is a sexually-transmitted contagious virus.
that's why Gardasil vaccinations are important not just for girls, but boys too--every vaccinated person helps reduce the spread. my 20-year-old son signed up for vaccinations, bless him.
I too, have made sure my 20+ yr olds have been vaccinated and discussed in depth how important it is...0 -
Thanks for sharing your experienceJoel4 said:SCC unknown primary
I was diagnosed SCC unknown primary two years and 4 months ago after finding a lump in my neck while shaving.
The lump was a swollen lymph node so I had a left neck dissection and tonsillectomy.
39 nodes were removed and only the was positive for cancer.
Pathology results were as good as can be expected and I had no rads or chemo. Two years and 4 months later I am doing great and feel better than I have since my twenties (I'm 41 now).
Tell your friend to stay positive and hope for the best. I have a very strong faith in God that I feel was the key for me but fear is a beast the we all must contend with. My mind raced with worst case scenarios at times but it is important to stay positive and believe that all will be well.
As far as the HPV thing goes, yes it is contagious but almost all of us are exposed to it at some point in our lives and only a very small few end up with cancer. For most folks it just runs its course and goes away and in my opinion is not worth worrying about.
I'll be praying for your friend!
Joel
Joel,
Your experience is very encouraging. Thank you for sharing it. It means a lot to hear such positive things. What a process some of us must go through in life. I think it will make us stronger and better individuals in the long run. God Bless you and thank you.0 -
Never A Dumb Question...
Please don't ever think any question is dumb or not worth asking.....
Now you might get some ribbing or teasing, but it's all in fun....and we all know your're gonna have thick skin if you go through radiaiton like a lot of us, LOL....
As for your question....on lying dormant.
Mine would be a prime example..
If I got it sexually transmitted, it had to be over 20+ years ago (my marriage time frame) before I was Dx STGIII SCC HPV+.
Since (and prior) to Dx, my wife has been checked every year, and has never had HPV show up.
JG0 -
not dumbcureitall66 said:Didn't mean to sound dumb about asking about it being contagious
It's obvious that's how it came about(by being contagious). My question is it has possibly lied dormant for so long and something triggered it to become cancer at some point....so obviously anyone in close contact (sexually) would be exposed in someway...but what about a child just giving their dad a kiss... I guess I should have made myself more clear...my brain has just been rattled and I sometimes think everyone is thinking the same thing I am.
pardon, no intent to suggest the question was dumb.
just shamelessly wanted to drop a plug for vaccinations.
can't be sure...but reckon I most likely picked up the virus sometime between 1997 and 2001. dormant for over 10 years, yikes! scary, thinking about whether we may have unknowingly passed it on to others.0 -
The fears...blackswampboy said:not dumb
pardon, no intent to suggest the question was dumb.
just shamelessly wanted to drop a plug for vaccinations.
can't be sure...but reckon I most likely picked up the virus sometime between 1997 and 2001. dormant for over 10 years, yikes! scary, thinking about whether we may have unknowingly passed it on to others.
Although we do not know exactly that it is HPV16+ derived at this time, the ENT is only speculating it is a good possibility as he is not a smoker or heavy drinker. We are thinking if it is, it stems from a very long time ago and just lied dormant. Since there is so much uncertainty from doctors relating to HPV16+, seems all we can do is guess a bit. But, I think to myself, does it really matter where it came from? I just want to focus on how to cure the cancer that has possibly stem from it. I understand that if it is HPV related that the response is good.....what a way to wish/hope it's HPV derived.
If you don't mind me asking, has your spouse or significant other been tested prior or after the diagnosis? If you choose not to answer, that's fine or you can private message me. I'm just curious for our own situation.
God Bless you for taking the time to share your thoughts and experiences with me and others.0 -
HPV testing...Skiffin16 said:Never A Dumb Question...
Please don't ever think any question is dumb or not worth asking.....
Now you might get some ribbing or teasing, but it's all in fun....and we all know your're gonna have thick skin if you go through radiaiton like a lot of us, LOL....
As for your question....on lying dormant.
Mine would be a prime example..
If I got it sexually transmitted, it had to be over 20+ years ago (my marriage time frame) before I was Dx STGIII SCC HPV+.
Since (and prior) to Dx, my wife has been checked every year, and has never had HPV show up.
JG
How is the HPV tested among the rest of us that do not have the cancer as you state your wife has been checked every year? My understanding is that the lower HPV's are usually hard to detect unless you get genital warts, the the higher HPV's (16 +) are found in our routine Pap's as they are the HPV Cancer virus's....but maybe I'm wrong.0 -
oh yes it is....phrannie51 said:Waiting is excrutiating......
I remember well....the cancer doesn't travel as fast as our imaginations tell us...thank god, and I remember every one here telling me to just hang on, that treatment will begin soon enough. Once begun it's whirlwind of never ending appointments....
p
I actually had to use your line here about "the cancer doesn't travel as fast as our imaginations tell us" yesterday. He was having a bad day and said all he could think about while waiting for his first Onocologist appt is how fast it may be growing while he waits. Thank you for sharing that statement with me. It really helped a lot!0 -
oh yes it is....phrannie51 said:Waiting is excrutiating......
I remember well....the cancer doesn't travel as fast as our imaginations tell us...thank god, and I remember every one here telling me to just hang on, that treatment will begin soon enough. Once begun it's whirlwind of never ending appointments....
p
I actually had to use your line here about "the cancer doesn't travel as fast as our imaginations tell us" yesterday. He was having a bad day and said all he could think about while waiting for his first Oncologist appt is how fast it may be growing while he waits. Thank you for sharing that statement with me. It really helped a lot!0
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