| Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Sep 2009 Posts: 229 | Suzanne, Just a curious question about your history (maybe that's why they thought it was caused by HPV) and one that I've been wondering about myself. Please smack me if I've crossed the line by being too personal. My history includes a Pap smear that went from a Class I to a Class IV about 16 years ago due to HPV (I don't know the strain). After cryosurgery, I went back to a Class I and it's been the same since. I only have the report for the tongue and lymph nodes, so I'm sure they didn't test for HPV. I did bring that up on my 4 week check up because I am curious as to the coincidence. I know it didn't "jump" from point A to B, but just found it interesting that at one point in my life the HPV was there and here I am now. My doctor found it interesting too, but didn't have any input. I just don't know if there is any correlation between the two types at different times in my life. Sorry......you know how I love to ramble! LOL
Patty 08-10-09 Partial Glossectomy w/suprahyoid neck dissection SCC T1NOMX Stage I | 46 years old
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Suzanne, It seems to me that the doctors don't know what they are talking about. With the experts we have here regarding HPV, and from what I have read, there are no documented cases of and HPV+ tumor on the mobile tongue. How anyone can make those statements without proper testing? In my opinion, borders on malpractice. Curious how this happened at Penn when you go to Fox Chase. Hope you're feeling better today. The weather was great today for the walk and we all missed you. Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Man..it took me all day to figure out what to say after I read the posts. I thought I was smarter than that. Turns out I needed you guys to fill me in. I've been so desperate since 2007 to know WHY this happened to me. I hear what you all are saying...I do. I want to talk to the docs and see what they say. I guess I feel like they are all smart people at a very good hospital so maybe they know what they are talking about Patty...I would never smack you!! lol...you're funny. I'm not sure what the personal question is though. I'm not sure what my pap smears have shown. They don't check for HPV even when I asked them to last year. They said even if it did show HPV that would have nothing do to with HPV that would cause OC. I've heard that HPV can come and go because it's a virus. Maybe that explains why one point in your life it was there and now it's not. I do still have a questions about HPV. Is is contagious?
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | HPV is passed from person to person via skin to skin contact. This includes all forms of it from the simple, benign wart causing types to the oncogenic versions of it. It is the most common sexually transfered STD in the US. Contagious is the wrong word, it congers up the vision of the plague and air borne disease or lepers. This virus is transmittable.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Sep 2009 Posts: 229 | [quote=suzanne98] I'm not sure what the personal question is though. [/quote] LOL I never actually posted a question, did I? I wasn't sure if discussing a pap history was considered too personal for you.
It's hard not being able to figure out "why" factor.
Patty 08-10-09 Partial Glossectomy w/suprahyoid neck dissection SCC T1NOMX Stage I | 46 years old
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | suzanne For what it is worth, I too longed to hear the doctor's give me a reason WHY I got this terrible cancer. After joining OCF, I thought it was probably HPV considering my single years. I think all of us want to know WHY or even WHY ME? It's part of the common bond we share despite the differences in age, location and lifestyles. Boatswife: Just to muddy the waters even more, my wife's PAP smears have been tested for HPV but also came up negative if that is the question you wanted to ask. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Suzanne, I know this may sound strange, but having been a heavy smoker for years I have been spared the "why me" burden. I did this to myself in no uncertain terms. Having said that I still think it is important to know your HPV status if you think this is the cause as HPV is transmittable. In the mean time thought I would share with you the sign I have had tacked up over my desk for years. It says �IT IS WHAT IT IS�. I look at this sign often when questioning a setback in my professional or personal life. It reminds me to deal with �What is� and stop wondering about the �What ifs and Why�s�. I can�t change the past or what brought me to this day, but I can act today to effect what my life will be like tomorrow. This I know. Kelly
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Here's a few HPV facts I have acquired throughout my journey: HPV is the most common sexually transmitted virus in the US. You can transmit the virus by touching someone's skin (warts) and kissing, both orally and vaginally, just to name a few. HPV infects the squamous cells and can cause cancers of the cervix, vagina, penis, BOT, Tonsils and anus. By age 50 at least 80% of women will have acquired the HPV virus. This is known because their bodies have produced the antibodies. The CDC estimates that 80% of the entire US population will have HPV at some point in their lives. How many will have the oncogenic (cancer causing) forms is unknown. Our immune system normally (estimated 90% of the time) clears the invading HPV. This year 11,000 new cases of cervical cancer will be diagnosed in the US and 3700 will die. Over 9000 new cases of HPV related cancers in AMERICAN MEN each year are diagnosed in the US and half will die. More men die from HPV related cancers than women. The HPV virus may lie dormant for DECADES before cellular changes are seen, when, as we know, it may be too late to deal with. Many HPV positive cancers are not found until they are already a Stage III or IV. There are well over 100 known strains of HPV and HPV 16 is the most prevalent strain causing cancer. In the US alone there are already over 20 million people infected by HPV and 6.2 million additional people are infected each and every year by HPV. There is no evidence that vaginally infected HPV will travel to other sites within the body and vice versa. Science knows exacting how the HPV virus turns a good cell into a cell out of control (cancer) but even with that knowledge the only way they have found to treat it is to either remove or kill the bad cell and any good cells in the vicinity. Scientists do not know if, after killing all the HPV transformed bad cells, if one can be reinfected and if reinfected can they still cause more cancer. To me that's only logical. They also do not know why it goes dormant; where it goes dormant; what triggers it's revival and what exact role our immune system plays in preventing or allowing HPV to do it's thing. There is a vaccine (Gardasil) that seems to be 100% effective in preventing the infection of pre sexually active, i.e., not already infected, 4 different strains of HPV, including 16 and there have been several studies attempting to boost the immune systems' response to already acquired HPV. Hopefully with increased attention to the virus more will be discovered and one day HPV will no longer cause cancer.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Brian...your post made me laugh..you're right. The word contagious sounds bad.
David..thank you for the facts, I always like some stats:)
Charm, Patty and Kelly, thank you also for your input. Patty, that isn't too personal for me:) You know how they always say they will call if the pap is unusal? They never call me...so I guess that is good. I don't really need any more problems.
I so appreciate everyones input and understanding. On Friday I was so excited. I thought "Ahh...I finally know why this happened to me" Then I felt guilty like I did this to myself. Perhaps I didn't make the best decisions in my early 20's with the people I was with. But...like Kelly says (which I love) I can't change the past and what brought me to this day. I can what happens in tomorrow.
Thank you all xoxo
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Sep 2009 Posts: 229 | [quote=Charm2017] Boatswife: Just to muddy the waters even more, my wife's PAP smears have been tested for HPV but also came up negative if that is the question you wanted to ask. [/quote] Yes......I guess I'm thinking that with my positive HPV pap result years ago, did that have any impact on the cancer that I have now. I know it's probably not likely, but it just a thought that's in the back of my mind. [quote=Kelly211] I know this may sound strange, but having been a heavy smoker for years I have been spared the "why me" burden. I did this to myself in no uncertain terms. In the mean time thought I would share with you the sign I have had tacked up over my desk for years. It says �IT IS WHAT IT IS�. I look at this sign often when questioning a setback in my professional or personal life. It reminds me to deal with �What is� and stop wondering about the �What ifs and Why�s�. I can�t change the past or what brought me to this day, but I can act today to effect what my life will be like tomorrow. This I know. Kelly [/quote] I was very mad at myself for waiting so long in seeking care. I knew it wasn't right and still didn't do anything. When I told my doctor that, I could have hugged him. He said "we all just hope it will go away" and helped me get over that "my fault" factor. �IT IS WHAT IT IS� I love that and I'm going with it! LOL My husband just told me "you do what you have to do and move on to the next step" and we did. [quote=davidcpa]Here's a few HPV facts I have acquired throughout my journey: The HPV virus may lie dormant for DECADES before cellular changes are seen, when, as we know, it may be too late to deal with. Many HPV positive cancers are not found until they are already a Stage III or IV. There is no evidence that vaginally infected HPV will travel to other sites within the body and vice versa. [/quote] I think this is where my curious thoughts are with cervical HPV and this answers my questions. It still makes me wonder though, especially when it has the tendency to lie dormant.
Patty 08-10-09 Partial Glossectomy w/suprahyoid neck dissection SCC T1NOMX Stage I | 46 years old
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