Hi everyone:

My Sister was just diagnosed with Squamous throat cancer. We are terrified. She was complaining of swollen glands for 3 months. They finally decided to remove her tonsils - They found it in a tonsil they removed. She feels a lump by her lymph node and they think that it might have gone there. She is getting a scan the end of the week. My question is does anyone know where she can find an oncologist in Chesapeake Virginia? Is this an aggressive cancer - does anyone know if they found this in the early stages? Ive been up all night hysterical. She is very positive. Please help?

Hi, I live in Virginia Beach and I'm a four year survivor of this cancer. Mine was in my jaw. You will see on this board TONS and TONS of long term tonsil cancer survivors.

If you give me your phone number, I will call you and give you my doctors information. I went to THE group of doctors that handle this type of cancer in our area, they are at Norfolk Sentara/EVMS and are where you need to be. My email address is [email protected] Send me your number and I'll call you so we can get her into the right hands.

Take a deep breath. I have a sister also that I love dearly, I can only imagine your fear. Your sister CAN be treated for this and she CAN survive this.

Take care,
Minnie

Hello loving sister

I am a 4 yr survivor of tonsil cancer with lymph spread. After surgery and radiation treatment, I am back to working normal days and receive 'all clears' at my checkups.

I understand your panic, I couldn't bear to think of my brother being diagnosed although was able to deal with my own disease by accepting the situation. I found family support wonderful, in fact cancer brought me gifts in that regard.

Your sister will need your love during the coming months. You have found THE site for information on the disease. Go to the homepage here and you will find lots of facts and helpful info.

Keep us informed. Many here have experienced your journey and will offer support.

Love from Helen

Was she a smoker?

Hey David,

No, she isn't. I spoke with her sister today and we're working on getting her into my doctors office. She is 43 with two small children. I explained the HPV situation to her. For the record dearest David.........I know why you asked if she was a smoker.........but a new person to the board wouldn't know that you are hard at work collecting data, etc., on the HPV+ types of this cancer. Next time I would suggest a little explanation so it doesn't look like you are saying she has cancer because she smoked. Does that make sense to you?

Minnie

I was unhappy by the brevity of the message also. And the past tense. I'm pleased you have spoken with her, Minnie.

Helen

Minnie & Helen and to all NON HPV SCC,

No offense meant but whenever I see a new poster that mentions tonsil or BOT primary, especially with nodal involvemnet and no mention of smoking or even smoking years and years ago, that's the first question out of my mouth and Helen, tense had/has nothing to do with it at all. It was just my way of asking.

Look, I spent a whole lifetime avoiding tobacco because I was warned 40 years ago by the Surgeon General that smoking could cause cancer and I got the same cancer people got by smoking. You spent a whole life having sex and you got the same cancer I got by having sex and it was caused by tobacco.

We are being told that they are biologically different but the cancer's name is still the same.

My mission is simple, I want to spread the word to everyone that has been Dxed with SCC that the oncology community now recognizes 2 distinct causes, simply put HPV+ and HPV-. I want to clean up the 2 pools and get as many people that are HPV+ labeled accurately so that MAYBE the scientific community can use that data to better understand BOTH causes of cancer. I believe that by better understanding all the potential causes that develope into our cancer, we may one day develope a cure or a better form of Tx.

Please don't be offended. I have been a licensed CPA for 33 years. I search for answers everyday and I like black and white answers so when I get thrown into such a gray area I want to fix it. Maybe it can never be fixed, so to speak, but I'm still going to try to help all people avoid what I went through.

For people that got SCC from smoking, it's easy to tell everybody...DON"T USE TOBACCO but for people who are HPV+, what we say..DON'T HAVE SEX? DON'T KISS ANYONE? DON'T TOUCH ANYONE? The scientific community needs the purest data possible to draw accurate conclusions and I just want to help.

David,
I fully understand YOUR need for gathering data on HPV+ cancers. But that is NOT the intention of this message board and certainly not the intentions or goals of this particular thread. This thread is about a 43 year old woman that was just diagnosed with cancer, she has a 3 year old and a 16 month old. THAT is the focus of this thread and, IMO, we all need to keep that in mind when we reply.

I'm going to shoot straight from the hip at you about your comment concerning you avoided smoking while "we" enjoyed sex all our lives yet you still got the same cancer from having sex that "we" got from smoking. This is insinuating that somehow you are less deserving of oral cancer? Someone smoking 2 packs a day for 30 years is no more "deserving" of this cancer than someone that never touched a cigarrette. Because someone didn't smoke doesn't make their cancer anymore tragic or devastating. It will do you NO good David to dwell on the fact that you didn't smoke and have a cancer that CAN be caused by smoking. And right now that is the last thing that is worrying this new poster. We need to be sensitive to HER needs, not ours.

Love ya David but shooting one liners like that at a new patient is a no-no!

Minnie

And for the record David, you're assuming ALOT to suggest that both Helen and I came by our cancers through smoking. I started playing with smoking when I was 28 and going through a horrible divorce. Tried it for awhile, found out I didn't like it much. My doctors were adamant with me that smoking didn't cause the tumor that was deep within my jawbone. For all I know, my cancer was HPV+, I was only 41 at the time. My point is this. The vast majority of people that smoke DO NOT get oral cancer. So should I point my finger at them and question why they don't have cancer and I do? I also suspect that there are smokers that have HPV+ tumors, so for you to assume that everyone that is HPV- was a smoker is unfair on your part.

"My Sister"

I'm so sorry to hear that your sister is going through this. I always find it encouraging when family jumps into help. I think its nice when someone can go into the diagnostic and treatment phases with a good support system.

It sounds like you are on your path to finding a good Cancer Center with Minnie.

I hope you will keep us updated on your sister's progress and on how you and your sister are doing. And, if you have any other questions, there is collectively so much knowledge here...on the site itself and also from the people on this forum.

I find that reading here daily inspires me to make it through each new day with my husband's treatments.

Wishing you and your sister the best,

I agree with Minnie on her point of assuming that all smokers get oral cancer from smoking and not HPV. I find it bizarre that they are not testing tumors in smokers for HPV also and from my point fo view, makes the study flawed.

Now let's get back to helping this person beat this disease.

Take care,
Eileen

Eileen,

Good point you make, it does rather flaw the study doesn't it. If someone that doesn't smoke can have a HPV- cancer then why can't a smoker have an HPV+ cancer?

I spoke with Angie today, wonderful woman. She has a HUGE support system and a strong faith. She went for a CT scan today and has an appointment with my docs early next week. She's in good hands and has a very positive scenario in my opinion.

Minnie