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.

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?

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.

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.

Dear mmadison2, You sound like you have a good head on your shoulders 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

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.

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

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, 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. . 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

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.

I forgot to add - I'm not sure if your husband has had the surgery or not - but wanted to let you know that the recovery isn't that bad if you have the surgery and neck dissection. I can't comment if you have radiation - as I didn't have that - but most people on this board have and can tell you about that - But most people have no idea that I've ever had cancer. My speech is about 99% what it was before (only myself and my mom can tell a difference), I can eat almost everything I ate before (have a problem with crackers and really dry things due to dry mouth - they removed a couple of salivary glands during my surgery) and my scars are fading really well. Doctor said to use sunscreen on them (SPF of 30 or more) and use it every day - and it really faded the scars - not sure why - but something in there works. I had used Mederma for 3 months and not much improvement - switched to sunscreen with his recommendation and now - most people don't even notice I have a scar clear accross my neck.

So - hope that might ease some anxiety that I'm sure he's going through - I know I was really concerned about all of those issues.

Hi mmadison --

It's me again -- as you see, you will get some excellent advice from folks on this forum. The best overall is to acquaint yourself as quickly as possible with this disease (the OCF web site is one of the very best sources, also google for review articles which summarize current best thinking on oral cancers.)

You should go with Steve to all his consults and be prepared to take notes and to listen carefully, as he may not hear everything or may be too freaked out to absorb it. Try to stay calm and not be afriad to ask the hard questions. What will be the side effects? How do you plan to alleviate or reduce these? How extensive will the surgery be (it is probable he will have surgery to remove the tongue tumor, if it is lateral tongue -- whereas many CCCs do not do surgery on the base of tongue) and what support will I get afterwards re speech and swallowing (if necessary)? How many cases like this have you seen and what has been the outcome? and so forth...

If it is any encouragement, while up at Hopkins we met a number of lateral tongue patients -- they had had pre-radiation surgery, quite conservative to retain as much noral tissue as possible, followed by chemoradiation. Most had no other surgery (Hopkins does not do a lot of neck dissections now and Sloan-Kettering, considered #1 CCC, does none). They were all doing well in the speech/swallowing area.

It is too bad your insurance did not allow you to go to a top CCC when you were diagnosed -- to quote a friend who runs a prostate cancer web page, "where you are treated and by whom is probably as important as what is done." However if Steve's case is before a tumor board at a CCC, that should ensure a "team" approach to his case -- a tremendous benefit as coordinating all the players can be a nightmare.

You will have to be proactive and forceful, and also check that Steve is getting all his pre-treatment appointments in (if he's getting radiation, pre-treatment visit to dental oncologist to evaluate health of teeth, for example.) Make a chart and log in everything. I bought a big notebook, started on page 1 with date and "consult with Dr. ---" and we are still using it, all notes in date order. It allows you to go back to Dr. or nurse and say, " on such and such a date you said I should have this test -- what about it?"

We are off to Australia in two days for 3 weeks, a trip postponed from last year when Barry was diagnosed only 3 weeks before we were to leave. Well, this time we are really going! I will try and keep in touch with my email some, but probably not very often. But don't be reluctant to come back to this forum for help anytime you feel at a loss, or just want to vent...

Best luck, Gail

Thanks everyone for your support and advice. I spoke with one of the members last night, Jerry, on the phone and that was very helpful. Just want to be prepared for everything we might be facing. Steve is having a hard time facing up to this disease right now so I am doing all of the leg work researching and finding a good support group such as yourselves, to get us as ready for the battle as we can. I don't mind though, because I would rather he save his strength for his treatments. Although I do think it is important to get him as mentally prepared as I can to know what he's up against. His appointment with the tumor board is Monday and the surgery is scheduled for next Thursday. Luckily his mom is now able to fly in to sit with me and be there for him when he wakes up. I was getting concerned that I might be waiting alone and that I might loose it. I talked to her last night and it was a real comfort to be able to express my feelings and concerns. I am going to be the long term caregiver though, so I'm sure I will be using the forum frequently to share my experiences and Steve's and to continue learning about all of your challenges. Thanks again.

Michelle

Hi Michelle,

Forgot to mention a few things last night on the phone. The scar from the neck dissection is not even noticeable now and most of the other members will tell you the same thing. The surgeons know how to hide the incision in the natural folds of the neck. Also, there is still some numbness in the chin and neck area. My tongue is slightly numb where the surgery was done. I hardly notice either anymore and it is a small price to pay.

Happy to hear that your mother-in-law will be with you during the surgery. The patient has it easy, they're asleep. You need that support and it's great that you will have it.

Jerry