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#20766 07-25-2006 11:03 AM
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I just wanted to introduce myself and my case to the board. My husband was just recently diagonsed with stage I SCC on the right lateral tongue. We meet with the tumor board on Monday to get their assessment for a course of treatment. We were lucky that it was caught so early. The MRI showed no inflammed lymph nodes and that the tumor is contained only to the tongue. My husband has never smoked and doesn't drink alcohol and is in very good shape. I know that those things are not always factors in oral cancer but it certainly puts you in a lower risk group. In doing research though, I have now found that strong correlation that is being put out there between HPV and oral cancer. I was diagnosed 4 years ago with a very aggressive cervical cancer, having both squamous cell and adenocarcinoma, a combination found in only 10% of all cervical cancers. This is because I have two aggressive strands of HPV, 16 & 18. I have been cured after 2 surgeries to remove the cancer and get checked every 3 months because of my high risk case. I have posed this issue with my husbands ENT oncologist and asked if we could have him tested for the virus. He said he would research this for us and let us know what he finds out about the testing. What are the chances that my husband has contracted HPV from me and now has given him this horrible disease? I feel so responsible for everything. I know I shouldn't blame myself because no one knew that this was even an issue a few years ago. It is hard not to. We don't even know yet if he has HPV.


Michelle, wife & caregiver of Steve/T1N1M0 right lateral tongue cancer/Surgery 8-3-06/Started treatment 9-13-06 -- IMRT x30 Plus 3 sessions carboplatin
#20767 07-25-2006 11:07 AM
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Sorry my message got cut short from a power outage. I just wanted to know if there were any similar cases like this where a couple both contracted cancer from this disease?


Michelle, wife & caregiver of Steve/T1N1M0 right lateral tongue cancer/Surgery 8-3-06/Started treatment 9-13-06 -- IMRT x30 Plus 3 sessions carboplatin
#20768 07-25-2006 11:29 AM
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HPV caused cancers still are dependent on genetic predispostions that we do not fully understand. Also remember that HPV can be dormant in your body, or appear without symptoms at various times during your life, for decades without causing noticble problems. That can mean that using my own case as an example, I could have contacted HPV many decades before my marriage, and my subsequent oral cancer could have nothing to do with the fact that at some point in my current marriage, my wife was HPV 16 positive. (She is negative for the virus now, her immune system being able to shed it.)

You do not want to get into this thought process for which there is no absolute answer, and you certainly do not want to be living with guilt or blame in your relationship. Put this out of your mind and concentrate on the positives and the necessary tasks of seeing your husband get through the process. You will have enough emotional baggage to deal with as you both fight this battle - found early or not. You will carry the after affects of being a survivor for years into the future, as fear of resureence and survivorship have their own emotional burdens. But this is an emotional question that you need to let go of as soon as possible, there is no absolute answer.


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.
#20769 07-25-2006 12:20 PM
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I do agree with you but I do think there could be some benefits to finding out this link, if not for our situation, than for others in the future. It could be an opportunity to help out research as well. I have always lived in fear knowing that my cancer came on so quickly and to know that it could easily happen again. Now I have 2 people to worry about (myself and my husband) and would like to be able to avoid these worries with our future children. The unknowns are so vast and I think that if we can help contribute to the research that we may be able to help others prevent this from happening to them. To have two rare occurences fall with in a same family must be valuable in some way to gaining further knowledge into this issue. I take it from the way that you stated it that you were HPV positive? How did you go about getting tested?

Don't worry, I am definitely there for my husband and have tried not to let him see any of these additional concerns that I have. I want him to stay focused on the main issue at hand, and that is fighting this disease. It has actually been very beneficial that I have been through this and know all the necessary steps in approaching treatment and the many questions to ask.


Michelle, wife & caregiver of Steve/T1N1M0 right lateral tongue cancer/Surgery 8-3-06/Started treatment 9-13-06 -- IMRT x30 Plus 3 sessions carboplatin
#20770 07-25-2006 02:44 PM
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Dear mmadison2, You sound like you have a good head on your shoulders smile I am complimenting you for that because my husband's Surgeon said the same to me after we had been in treatment for 7 months. It made me feel stronger and thus better able to help John. Staying focused on the "issues at hand" is in fact the best thing youall can do. Stay strong. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#20771 07-25-2006 03:02 PM
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I found out when they biopsied my primary. If you read the other (many) postings here related to HPV, (search function in both the board, and then on the main web site) you will see that it does not alter treatments, though there appears to be at least in preliminary research some survival advantage, but the final word on that will not be out for years. If you wish to aviod some of this with your children, as genetic links are not a significant factor in oral cancers, have them vaccinated with the new Guardacil product. Most of the research work being done on HPV and oral cancers at least to the extent that it involved clinical trial and patient data collection is being done back east, and the epicenter of all this is at Johns Hopkins.

As to helping others not step into this same whole, this is the issue with oral cancers in general. We have a huge public disconnect when it comes to awareness about this disease in general, let alone those that may be tied to HPV. We can have significant impact by being out there and vocal through the foundation, health fairs, media interviews, and many other non research arenas.

I suggest that you do a search for Gail Mac on the boards and drop her a quick email. You will find her a wealth of knowlege and just coming out of a situation not unlike yours.


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.
#20772 07-26-2006 03:42 AM
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Hi mmadison --

Here's Gail -- as Brian said, I am coming out of a similar experience though my husband's cancer was tonsil/base-of-tongue and also had spread to his lymph nodes. He was HPV-16+ and we found out because he was treated at Hopkins and they test everyone now -- finding very high percentage of their new HNC patients are HPV+ (but not all).

Dr. Maura Gillison, who is heading up much of the HPV/HNC work at Hopkins told us that my husband may have contracted the virus 15 or evn 20 years before developing his cancer, that it often takes years for the infection to result in cancer in those people whose immune systems did not shed this ubiquitous virus. (About 70-80% of us get infected with it at some time in our lives, I have read).

I agree with Brian that you cannot distract yourself with guilt or blame because there is no way of knowing the answer -- even if your husband does turn out to have an HPV-16+ cancer. And as far as that goes, very few lateral (mobile) tongue cancers appear to be HPV-associated according to some studies (e.g. Int J Cancer. 2004 Dec 20;112(6):1015-9.
"Human papillomavirus is more common in base of tongue than in mobile tongue cancer and is a favorable prognostic factor in base of tongue cancer patients." Dahlgren L at al.) so it may be a moot point.

If you wish, you can get a tissue sample tested for HPV at Hopkins, though as Brian says it will not change the treatment protocol. If it will give you peace of mind, however....

http://pathology.jhu.edu/labservices/hpv.cfm

Be strong, your husband wil need you a lot in the coming months, but this disease can be beaten -- as you will learn from the many great folks on this forum...

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#20773 07-26-2006 04:55 AM
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Thanks for your advice and encouragement Gail (and to you Brian and Amy, as well!). I wanted to seek out help from Hopkins when I was going through my cancer because back then I was living in Gaithersburg, MD and they were the best around. Turned out my insurance didn't cover it, though, so I had to find another cancer center in White Marsh that took my plan. I wish we were back there now, though because they are the best around in my mind. Do you have any advice on keeping sane during all this? I've been trying so hard to keep it together for him (my husband's name is Steve) but feel like I am somewhat alone in this. All of our family members are back east and being out here I feel so isolated. I know Steve has sensed my extreme worry and feels like he needs to support me through this, when he is the one needing the support. We've only been married for 5 months and I feel so new at being a wife! The person I was with at the time of my cancer was never there for me when I needed him including both of my surgeries so I want to make sure I am there to support Steve through every portion of his treatment both physically and emotionally. I would never let him go through this alone as I did.

So how is your husband? Did everything come out OK after his treatments? Sorry I'm new to the board so I am just learning everyone's experiences! I think the worst thing about this is watching him suffer and not being able to do anything to stop it. It's like loosing control of everything. He seems more worried about the scars it will leave and the impact it will have on his speech than he is about anything else. Sorry for so much venting, but I guess that is part of what this forum is for. I hope that I can help others out too in the future and be able to share our experiences. His surgery is scheduled for Thursday of next week and we are both looking forward to get that portion over with. Thanks again and I hope all is well back east.

Michelle


Michelle, wife & caregiver of Steve/T1N1M0 right lateral tongue cancer/Surgery 8-3-06/Started treatment 9-13-06 -- IMRT x30 Plus 3 sessions carboplatin
#20774 07-26-2006 04:16 PM
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Michelle, O.K. let's get down to brass tacks here- you are in the "Scared to death" phase. However, because of your prior experience, you are not a beginner. Remember that. You have proved yourself to be a survivor! Now you can grab Steve's hand and help him do it. Granted, this is not the 1st choice scenerio of how to spend your 1st year of marriage, but when you get through this, everything else should be a piece of cake. laugh . I'm sorry to read you don't have family close. You DO have us and perhaps you can find some "face-to face" support in the Santa Clarita area or thru his Doctors. But please don't let yourself feel isolated because you can call most of us when you need to hear a real voice or e-mail or post. You and Steve will get through this together. Check the "Getting through it" topics for some practical and emotional help. And keep talking to us. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#20775 07-26-2006 05:05 PM
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Michelle, I was diagnosed in January with case very similar to your husbands. Right lateral side of the tongue - SCC. Non-smoker and non-drinker and 29 years old. Mine was a stage 2 for size of tumor and no lymph nodes were involved. I had only resection and lymph node neck dissection. I did not have radiation - although I did get the consult appointment just to make sure - that everyone was on the same page. I hit my 6 month mark yesterday and am doing fine. My ENT does not feel that mine was caused by HPV - nor does another highly published ENT in the field. I read the (entire - and long) article that Gail Mac posted and it states very clearly that the findings for mobile tongue cancer were that HPV DID NOT CAUSE most of the cases. Something like only 2 out of 98 cases even tested positive for HPV - and they found that could have been a coincidence. However, the findings were different for base of tongue cancers. Those had a 40% or so correlation with being HPV positive. (I'm going off memory hear - so don't hold me to these figures)

Just focus on him getting better - there is no one to blame. You are not responsible for it - it's just one of life's hurdles that has been thrown at you. Good luck. Find a doctor who you trust and is knowledgeable about head and neck cancer. I did not go to a CCC - but have a doctor who was trained at one - and he is the absolute best. Good luck.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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