Small study showed high accuracy but hurdles remain, two experts said
by WIFEpraying on Wed May 18, 2011 08:44 PM
My husband, age 45, was diagnosed with tonsil cancer in April. The only symptom he had was an enlarged mass on right side of the neck. He immediately went to our family doctor and after a CT scan he sent us to an ENT. At this point he had a needle biopsy of the neck which confirmed cancer cells. Just a few days later his tonsils were removed and there was a growth in "one" tonsil. We just went to MD Anderson (Houston) and met with several teams of doctors (chemo/radiation/dental). It was confirmed that the cancer is in at least "three" lymph nodes of right neck. The chest x-ray looked good and the tonsil area looked good. The doctor indicated that two large nodes (one is >3 cm) are in level 2 and one small node is in level 3 of the neck. Each doctor we met with mentioned that we would probably do three rounds of chemo (9 week treatment) and then at least 32 radiation treatments (6-7 weeks). I asked the radiation doctor what stage his cancer is and he did not really answer the question. The doctors will meet tomorrow and review my husband's records/tests and determine the appropriate treatment plan. I am keeping the faith that he will respond well to the chemo/radiation treatments. If he does not they will have to remove the lymph nodes. A couple of facts I need to add: he usedsmokelesstobacco for 33 years and also tested postitive for HPV. The doctor informed us that he could have had the virus for 20 years and never knew it. Ladies, this is an STD that is a major cause of cervical cancer. You can have it and never know so it is very important to have yearly pap smear since that is the only way to detect it. I just had mine in March and I called my doctor and I am negative. The interesting thing is that MD Anderson said the response to treatment is better, than normal, by testing positive for HPV. They have the cause of his tonsil cancer as HPV and not tobacco. They are doing a study to prove that tobacco use can cause HPV. If anyone has any information or comments to share with me it would be greatly appreciated. I have been very strong and supportive of my husband and want to believe that we will be fine. The doctors have not given us any idea of his prognosis. We live approximately six hours from Houston and will be staying with family during the radiation treatment. I am so glad I found this site and look forward to any responses.
by GoldDustWoman on Wed May 18, 2011 09:04 PM
Dear Wifepraying ~
Oh my goodness, I could have written this myself just 6 months ago. My husband at 51 had the same diagnosis, with the same one and only symptom the swollen lymph node, last November. SCC, left tonsil, 2 nodes involved, HPV based. He finished 6 rounds of chemo and 35 radiation treatments in January, no surgery. (His tonsils had already been removed years ago.) He had his PET scan a month ago and was declared cancer-free with a low likelihood of reoccurance. You count on that for your husband too!
There is so much for me to say and share with you about what you'll go through over the next few months. I don't want this to be pages long, so I'm going to start with just a couple of things.
1. You mentioned you asked about the stage and they didn't really answer. I think I may know why. With lymph nodes involved, the staging is likely at 4. But you MUST remember that stage 4 throat cancer is not the same thing as stage 4 in others. Because of the location of the tonsil and because it's part of the lymphatic system, it is a rare thing when there's SCC in the tonsil and not in the nearby lymph nodes. So stage 4 in a tonsil cancer patient does not mean it has traveled all over the body, it doesn't mean that it's a lower cure rate, it doesn't mean any of those scary things it means with say, breast cancer. So IF you hear stage 4, do not be afraid. Tell your husband that if he hears stage 4, do not be afraid. It's not the same as other cancers. It was our head/neck oncologist who explained this to us - even going so far as to say he believes staging for head/neck cancers should be done differently so as not to scare people - it's just not the same thing. In fact, my husband and I decided we weren't telling anyone in the family that it was stage 4 so people who didn't understand wouldn't freak out. That was a good decision for us.
2. You are going to hear and read all kinds of horror stories about the treatment. I mean, terrifying stories. DO NOT LISTEN. People came out of the woodwork to tell me about their friend's husband who still couldn't eat after 9 months, about so and so who had to have all of their teeth pulled, another guy who was in so much pain every day he had to be on constant pain killers and they had to install black out shades so he could sleep. None of these things happened to us. My husband was eating 3 weeks after treatment. He didn't need to have 1 tooth pulled. He never took anything more than Tylenol. And thank God I didn't need to buy blackout shades. Some people certainly have these experiences. My point is simply that everyone is different. Don't let other people's stories terrify you. They did me, and it was for nothing. It's good to have the info, but you and your husband need to visualize him handling the treatment in the best possible way.
3. They will likely recommend he get a feeding tube. Get it. Our bodies need nutrition to heal, and there will be lots of healing to do. As his caring and loving wife, the last thing you need to worry about is that he doesn't feel like eating, or he can't eat more than a couple of bites, and he's not getting nutrients. When people ask my husband (and they often do) what's his advice for a throat cancer patient he has only one thing - get a feeding tube.
Stay in touch, let me know how he's doing, and if you're so inclined I am happy to communicate here with you throughout the process. I'm sure they've already shared with you that an HPV based cancer is a good thing - easier to kill and significantly less likely to return. You and your husband will get through this and he will be fine. It's not an easy road but expect the best. And I can help prepare you every step of the way if you'd like.
Much love and prayers for strength and healing ~
by GoldDustWoman on Wed May 18, 2011 09:25 PM
Hi - ok one more thing.
Some people get all concerned about the "stigma" of HPV. I don't know if you and your husband will be faced with that, and I certainly hope not. But just in case I am compelled to share this. Be thankful it's HPV for all the reasons your doctor shared. The whole "sexually transmitted" thing is blown way out of proportion. For one, HPV isn't even transmitted like other STDs, two, they don't really know enough about it yet to understand all of the ways it can be transmitted. Three, they don't really know enough about how it lays dormat, what causes it to become active, etc., etc., and I say "WHO CARES!" I was just so thankful to hear that my husband's cancer was more easily cured than some others. They believe that 80% of the population carries HPV and they can't tell if it's dormant in your body, they can only test if it's active in a certain area. My HPV test was negative too, but I'm sure it's in there somewhere or it's been in there in the past - I think we all have viruses and bacterias in us that they don't even know anything about. So...just in the chance that you share this good news and someone has attitude ... don't you let them go there! And don't you go there in your own mind either. Our doctor said there's an epedemic of HPV based head neck cancers in the last 7 years or so, in men in their late 40s early 50s. They don't know why yet. I'm sure someday they will - and you mark my words - they are going to find out that HPV isn't just a sexually transmitted disease. Or even if it is, so what, we get disease from the air too and we still have to breathe. Sometimes our society is just a little too attitudey for me - like all of that controversy about not wanting young girls to have the HPV vaccination for fear it encourages sexual behavior. Ridiculous.
Sorry, I got in a little bit of a rant there, :) but I feel very protective of you and what you're going through right now and I don't want anyone pulling out the attitude related to what they onlythinkthey know about HPV. You guys be thankful for it ~ cause your husband is going to kick it's butt.
Much love ~ GDW
by WIFEpraying on Wed May 18, 2011 09:52 PM
I truly appreciate your response. This is probably the most positive thing I have heard since this all begin on April 15th!!! As I have been reading a lot of posts, on here, I started getting worried when I was seeing so many stage 3 cancers and they mentioned one or two nodes. Wow, I thought we are really doomed since we have at "least" three nodes involved. Thank you for making me feel better. I'm sure I will think of so many things to ask you! That is wonderful news on the PET scan! WHOO HOO!!!!!! (you are an angel...)
by GoldDustWoman on Wed May 18, 2011 10:43 PM
Oh yes I know what you mean - cancer comes with so much fear and negativity. I really believe that a positive attitude is critical to healing of any kind. And there will come a time in this treatment that your husband won't be feeling so positive - and you'll have to help him. It is a tough treatment. But he's young, he has your loving support, and he will be fine in the end. Six months from now you're going to be saying WHOO HOO!! after YOUR husband's cancer free PET scan!
Keep in touch ~ I will be thinking about you.
by carymeback on Wed May 18, 2011 11:50 PM
My husband, at age 66, was diagnosed with tonsil cancer (squamous cell) on the right side, in Feb. 2009. His was Stage IV, as the tumor was about the size of a softball and was in all of his neck lymph nodes (one node being about the size of a golfball). The tumor had wrapped around his carotid artery, paralyzed the nerve to his tongue on the right side, and was starting to grow into his voice box. His tonsils had never developed and there were just rudimentary tissue there. He went through three 5 day long (24 hours a day) chemo treatments with Cistplatin, Taxotere and 5FU. He would go in the hospital for five days, then get two weeks off, then again, for a total of three times. He would check out of the hospital on Sat., then on Monday would get a "Neulasta" shot. It's expensive, but made a HUGE difference in his immune system. After he was done with the Chemo (which shrunk the tumor down 80%), he was "off" for about three weeks, then started on TOMO radiation for 40 weeks along with some more chemo (Carboplatin) once a week at the same time. Before he started radiation, he had a stomach tube put in--what a Godsend! His Dr's managed his pain, sores, nausea, etc. very well and helped him stay ahead of it all. He did initially lose about 30 lbs., but I made him up a special "smoothie" made of all kinds of good stuff to drink every day, and he still does. The TOMO radiation was great--it does a lot less damage because it is so precise, plus, he did not have to have any surgery to remove the lymph glands--the TOMO took care of that. He had very little skin burn and almost two years after treatment ended, his ENT said, after looking down his throat yesterday, "Oh, that looks so good!" It will be two years in August that his treatment ended and he's doing great! His PET scans keep showing clear. A lot of PRAYING helped for sure, too. The only side effects left are a "sticky" mouth (he has about 80% salivary gland function back), and now his thyroid is sluggish, so he will have to take thyroid medication now. Who cares! After all he has been through, that's the LEAST of our worries--HA Our Dr. told us that yes, it could be the HPV, but there are many different kinds of HPV, and we will never know if that's what caused his cancer or not. But yes, your past sexual behavior does eventually catch up with you. Good luck to you and hang in there--it does get better!
by GoldDustWoman on Wed May 18, 2011 11:59 PM
A person could have one sexual partner in their lives and still be infected by the HPV virus. Let's not perpetuate the stigma of HPV.
by WIFEpraying on Thu May 19, 2011 01:58 AM
by lardog04 on Sun May 22, 2011 03:25 PM
I applaud you gold dust woman, I too had throat or tonsil cancer and they said is was a positive result of HPV. The doctors also said it was from oral sex. Never asked me about my history but just left it like that, kind of making me feel like I was some sort of prostitute or sex crazed animal. I was diagnosed in December of 2009, started treatment in January 2010 with chemo for six weeks then two weeks off then six weeks of radiation with chemo 24 hours a day for week one, three and five. Last or sixth week of radiation was twice a day. My last scan in December, was still negative and I will be going back to the Doctor for a six month check up this month. I also had a feeding tube and used it for three to four months. If you have any more specific questions let us know and I will respond accordingly.
by cam1234 on Sun May 22, 2011 11:45 PM
I was 42 years old two years ago when I received almost the exact diagnosis as your husband. I had my treatment at Hopkins, and two weeks ago made my 2 year anniversary with a clean PET/CT. The disease is very treatable/curable. The docs at Hopkins commented that they may be over treating the disease because there cure rate is so high. I received 35 radiation treatments(IMRT), and 5 doses of cisplatin. You are in a great place at MD Anderson, and your chances of walking away from this unscathed are very good! The treatment is brutal, but totally worth it...your life will probably be back to normal in 2 years, hang in there!!
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