I finished radiation at the end of February and chemo at the end of May. A pet scan in July showed a small something at the original tumor site. The radiation oncologist and ENT recommended either waiting 3 months to scan again, surgery, or more radiation (2-2400 more. I've already had more than 7,000). I'm not convinced that any of these options are good so I go to get a second opinion at MSKCC and upon the review of my pet scan and a physical exam, the radiation oncologist there says she sees no reason to further radiate without further testing. I have a ct scan, an MRI, and a needle biopsy under ct guidance. 3 weeks have gone by and in that time, I found out yesterday that it is a very large tumor at the base of my tongue. He tells me that surgery would involve removing my entire tongue, voice box, and part of my face. He won't do the surgery because there's not even a 5% chance of it working. It seems my only options now are more chemo, radiation, and/or a clinical trial. I meet with the medical oncologist on 9/26 and RO either Friday or early next week.

I started to develop throbbing pain along my tongue which I thought was late onset radiation side effects. The pain started at the end of July and has gotten so bad that I saw a pain management specialist and am on a steady of stream of Percocet and Lyrica. Now we now that the swelling in my neck is not lymphedema or scar tissue from the massive amount of radiation but the damn tumor growing from the size of a quarter to what now feels like an apple.

I just can't believe this. None of us believes this when we get the diagnosis cancer, no matter what stage we're at. But I just can't believe that this bitch just won't go away.

I'm reluctant to say this to anyone but I'm terminal. I have no idea if any chemo will work at this point. I was pretty much told it could keep the tumor at bay but I don't believe it will ever go away.

Why can't the very thought of my almost 5 year old daughter and 6 year old son make this go away? Like, if I hug them enough that will cure me? I'm not stressed. I'm on so much medication I'm floating through the days.

I've been trying to research this on the boards and am not coming up with much, probably because I'm high and unfocussed. Anyone out there have a similar aggressive tumor? What should we ask the doctors?

I'm so sad for my kids, my husband, and my poor mother.

Katie,
I'm so sad to read this. Please chase a second opinion, especially on the surgical option.
My Kris had his original tumour recur at the BOT. We were told that he needed a total Glossectomy and laryngectomy , removal of the structures in his neck and a bilateral Neck dissection.
While we were shocked, we soon realised that this was the only curative option there was. It is now 19 months since Kris had this awful surgery and he is thriving.
Please, please get a second opinion.
Tammy

Katie, I am so sorry. This is heartbreaking news. As Tamvonk suggests, a 3rd opinion could bring in new options for you. I wish I had more than these words to offer -- you are in my thoughts and prayers, Katie.

I'm sorry to hear this. One of the things I can think of that may help is Intraoperative Radiation Therapy, IORT, similar to Brachtherapy, which I'm having next month. It's a 4 part process with a resection, radiation during surgery, possibly a flap, and then more Chemoradiation, are some of the ways, and possibly others. They do this even if you had prior radiation. My doctor is in Manhattan, and is one of the best in the country, and so is the Otolaryncolgy Department with patients coming from all over the world to see them. If you want, I can give you the names of the doctors, who are all are from MT. Sinai, MSKCC.

Katie,

I am really sorry to read this. It just isn't fair nor right! I would also recommend going for a 3rd or even 4th opinion. Over the years, I've been to 4 different surgeons at 4 different hospitals, and ultimately ended up at Johns Hopkins, which is also one of the best H&N centers in the country. Look into clinical trials and other options.

You and your family are in my thoughts and prayers.

Katie - please don't give up - do get a second opinion, and if surgery is required do it. Just because one dr. says he doesn't think it will work doesn't mean another can't do the same surgery with much success. I would save any potential chemo and rads for later if needed. I know the surgery sounds horrible - and debilitating but if it means you can spend the rest of your life watching your children grow up you deserve to try it. As Tammy said her husband is thriving. Hugs, I am so sorry to hear what is going on, and I know I am an eternal optimist but you have so much to live for hon.

Katie,
There are no words. I'm so glad you are here sharing with us and getting it off your chest. It just freakin' sucks.
Kathy

Katie, I am so sorry!!! Please try to go for a second opinion as soon as you can. I suggest seeking out one of the CCCs. Johns Hopkins isnt that far, neither is Sloan Kettering and both are top rated CCC's.



PS... It was great meeting you at the walk last weekend. (((HUGS)))

I had my second opinion at MSCKK and am now their patient, just to clarify. I was previously treated at the Carol G. Simon Cancer Center at Morristown Hospital in NJ.

Katie, I am so sorry to hear this news. Please go for as many opinions as you can. Don't give up. It was so great to meet you at the walk this past weekend. Thank you and Team Katie for coming!

Stay strong, and listen to these wise people on this forum.

I am praying for you and your family..

Susan

Some top cancer centers may choose who they want to treat, just like this national chain brand cancer center does, that has great marketing, but may not take a chance to lower their succes rates with risky patients, and know of a few people that were turned down, including myself, one at the "almost top" cancer cancer in the U.S, who didn't even want to consult me with, wasting my time, money, under the pretense they would. As mentioned, a doctor that may not treat one, may be treated by another, and may come down to their experience not just by their location, and I'm not brand loyal, like they aren't. Good luck.

Oh, Katie - I've been sitting here wanting to say some very strong expletives to kick cancer's butt! I'm so sorry to hear of all you have been through! I see hope in the comments above. And there IS hope.You have so much to live for - Please don't give up, keep fighting! I'm sending prayers and positive vibes for you and your family.

I've been praying for you katie.

Thanks, everyone. We saw the medical oncologist at MSKCC today and he recommends I start Erbitux next Tuesday, followed by Cisplatin and Taxotere on Friday. I meet with the radiation oncologist tomorrow and we'll see if radiation is an option yet. The idea is to shrink the tumor to a point and then start me on a promising clinical trial drug. I barely slept last night and was pretty out of it during the meeting but this is the gist of what was discussed.

I have to say that we were all pleased with this information. We weren't even sure that chemo would help me at this point. Nothing is written in stone, but we have to keep trying. As a friend said, the previous battle was lost but the war is not over.

I also got an Rx for the fentanyl patch which I have on now. I was told it would take up to 12 hours to kick in. I'm looking forward to waking up in a lot less pain. Fingers crossed.

Thank you all so much for your suggestions. It's been so wonderful reading all of your stories and getting your support. I'm so glad I could participate in last Saturday's walk. Let's make oral cancer history!

Encouraging news.

Awesome.... Hugs and prayers to you - hoping very much the drugs will make you pain free and the chemo does what it's designed to do.

So pleased treatment is starting again.
Any mention of surgery once the tumour has been shrunk?
I hope by now the Fentanyl patch has kicked in and you are pain free and have had a good nights sleep.
Yes definitely. Let's make oral cancer history.
Take care Katie.
Tammy

Katie, so glad you have this option for treatment, and I hope the patch brings you relief from pain. Stay positive, you are a fighter!

M

Katie, I'm glad to hear the options. I was trying to find the right words for encouragement, when I first read your post, and I came up with nothing but platitudes, which didn't seem right. I've been thinking of you though, and I'm glad there's a plan in place.

Katie,
Have you spoken to Drs. Harrison or Hu at Beth Israel? They are doing radioactive implants. Hoping for some good news for you. I know them very well and can run this by them if you'd like.
All the best,
Rob

Dr Harrison is my doctor too Rob, and who I was speaking of, and is doing my surgery next months with IORT, with Dr Jacobson, which is similar to high dose brachy without seeds. I switched from Mt. Sinai last year to see him.

I spoke with Dr. Nancy Lee today who is a head and neck radiation oncologist. She suggested we do the chemo first to get the tumor down to a manageable size and then she's referring me to Procure in Somerset, NJ, for proton therapy. Anyone here familiar with this treatment?

Time is of the essence, so I must start chemo right away, which will start on Tuesday. The tumor basically went from the size of a quarter to my guess is now the size of an orange in 2 months! The pain gets worse day by day. This is truly frightening.

I am so glad we switched to MSKCC. Although we were assured by more than one doctor at Sloan that the treatment I had in Morristown is pretty standard, going foward, Sloan has already given us more options. I'm not saying I'm not going to investigate your suggestion to go to Beth Israel, I'm just saying that right now I know that chemo is the only bet to prevent this tumor from choking me to death.

Procure is the Proton Therapy Treatment Center in the metro area located in NJ. I know someone from another board who was treated there, after a recurrence, but cancer may have returned again. One thing, there are not many studies done with proton therapy, and new therapeutic equipment needs no clinical trials for approval like chemo does before approval, and just needs to meet or exceed the current type of treatment equipment it is to replace, and submit a form to the FDA to be fast track approval. I guess others, including MSKCC, are waiting to see more results. On Dr. Lee's video, she mentioned they may be looking into obtaining.

Do what you think is best, on medical advise, and tumor shrinkage first sounds like a good plan. I wish, and hope the best.

I'm the mother of Katie B. Thank you all for the support and encouragement you gave Katie over the last 18 months. Your specific suggestions and general moral support helped her cope and gave her hope. Your generosity in sharing your amazing stories is humbling.

I want you to know that Katie had a very specific, rare and extremely aggressive form of tongue cancer and that, from what I've read of your stories, what happened to her so quickly should not happen to you. She's part of a very small group of young patients (under 40) with no known risk factors and no HPV component, whose cancers go from the size of a dime to the size of a lime in a matter of weeks. In this subgroup of patients, a recurrence within two years carries a poor prognosis. Katie's recurrence came within two months of finishing her initial treatment.

I want you to know, too, that everything that could have been done under these circumstances was done. Her doctors fought as fiercely for her life as she did herself. They never gave up, and when the tumor stopped responding to treatment, they were trying to prepare her for inclusion in a clinical trial. But this alien beast had a grip on her throat and wouldn't let go. Her pain meds were not changed to morphine and methadone until 10 days before she died, which she did peacefully and painlessly in her childhood home with me.

In the short interval between the end of the first round of treatment and the beginning of the second, she and her husband were able to go on the OCF fund-raising walk (last September), where she was happy to meet some of you, and to talk with ChristineB.

Her memorial service will be held next Sunday, March 16th, and there will be a table set up at the reception, with information on head and neck cancer and on the Oral Cancer Foundation's efforts to and raise funds for research and treatment.

Thank you again for helping Katie. Thank all you brave hearts.
Bless you.

-MamaM

Thankyou for sharing with us. I know you all have wonderful memories of Katie.
I know that I will always remember Katie and her brave struggle.
Thankyou too for raising awareness of this awful disease.
Tammy

Thank you for your post. Many blessings to you and your family.

Thank you for providing the update. It is so VERY sad to hear about those who lose the fight. Surely she fought mightily but the beast was too much and I so hope she was in peace and comfort on her passing. Don

Thank you, Katie's Mom for sharing with us. In the midst of the extreme sadness surrounding you and your family at the loss of your beautiful daughter, you have thought of others in their struggle against this horrible cancer beast. I will always remember Katie's love for her family and the strength with which she fought so mightily to survive. She surely is a reflection of the strength and loving care you shared with her. I hope in the difficult days ahead you and your family will be able to find moments of comfort in each other and in the beautiful memories of you all have of Katie.

Mama, do you have a link for the Memorial Service? There may be some members who met Katie last September who would want to attend.

Thank you so much for going into detail about Katies condition. Im sure it has not been easy for you, Damien or the children. Katie will be greatly missed by so many.

I am so sorry to hear this. Hugs and blessings to you and your family at this difficult time.

Thank you MamaM. Katie would be so very happy and proud of you that you found the strength to come onto the Forum and update us all about her courageous fight with this cancer. You and all of Katie's family will be in my thoughts and prayers on the 16th as you Celebrate the all too short life of Katie B.

Hugs

Donna

The memorial service for Katie will be held Sunday, March 16, 2014, at 1:30 pm, at the Community Church of New York, Unitarian Universalist, 40 East 35th St. (between Park and Madison), NY, NY.

Thank you MamaM for your message. Being a mother and grandmother myself, I believe I can understand to some extent how you are feeling. I will say a special prayer for Katie and her family on the day of the memorial. Please take care of yourself, too.

MamaM,

Thank you so much for your post. It is heartbreaking to loose a child, especially one so young. Katie became a member of the OCF family and we share in your loss.

My deepest sympathy goes out to you, Damien, her children and the rest of her family and friends. I never had the pleasure of meeting her, but from what others wrote about her, she was a very special person.

I don't know of you will see this, I just happened on it today. I just wanted to add a comment of how very sorry I am to hear about katie. So very sorry.