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