Just a quick introduction - just found this site and am quite impressed! Hubby and I have a web site but it needs to be updated, especially now that he has had a recurrence.

He was just hitting two years post-radiation when they told us that a lymph node on the other side of his neck had enlarged since his previous CT scan. They did a PET scan and it showed a hot spot and the needle biopsy gave us the diagnosis of SCC. Not a surprise, the surprise was the "inoperable/incurable" part.

So we are in palliative mode, buying whatever time we can. The last two months have been a constant whirlwind of doctor appointments and tests and the same will hold true over the next week +. He is scheduled to start IMRT on 12/29 and chemo will commence sometime that week. We are trying to squeeze in time to get the port put in as well as another PEG (he can't afford to lose any weight, barely maintaining now).

We've been going through all the "stuff" that has to be dealt with - wills, medical POA, directives, etc. Not fun but definitely necessary. We talk from time to time but have for the most part decided to keep our outlook positive, taking each day as it comes - know that each one is a gift.

Without treatment he wouldn't last more then 12-18 months. With treatment they are hoping to buy a couple additional years. We will continue to savor each and every moment!

Thanks for listening!

Donna

Hi Donna,

Why is his reoccurance inoperable? Is that true of all reoccurances? My prayers and thoughts are with you and Mike. I am only 2 months post rad and 4 months post surgery. He made it almost two years and had this reoccurance? I don't understand. Has this spread to other major organs in his body? Please reply with more detail on what happened. My prayers and thoughts are with you both. Dan

Donna, sorry to hear about your husand's ordeal. However, DON'T buy into the inoperable incurable part. I had SCC of tongue, with mets to lymph nodes on left side, had tongue resection and radical neck dissection in Sept to Nov '02. Following February PET/CT uncovered mets to right side. Had another neck dissection/rad to right side in April/May 03. Last PET/CT done in August was clear.

I'd get a second opinion on this incurable/inoperable part. What are they basing this on? Just curious.
Hoping all turns out well for you.
Bob

Bob

It's inoperable for a couple of reasons. The first is the condition of his neck - he has extreme fibrosis and it's truly as hard as wood. The second is the largest of the two tumors is already wrapped around the carotid. Since this area and the carotid are already damaged by the previous radiation, and since the tumor is invading the carotid artery itself, they (yes, we've had 3 opinions so far) will not consider surgery.

In fact, there is still a chance that the carotid will "blow out" from the radiation but this is a chance we are taking. The tumor is growing fairly quickly now and causing severe muscle spasms, cramping, headaches, lightheadedness & dizziness. Chemo will slow down the growth but not cure it. IMRT may (again, may) kill the current tumors but there is a strong chance they are not the only ones.

Sucks to be realistic but at least we are preparing ourselves for the worst while we hope for the best. 2-4 more years are a lot better than one. :-)

This page does a good job of further explaining some of what we are facing: http://www.bcm.tmc.edu/oto/grand/04062000.html

Recurrences, we have been told, have the highest chance of happening during the first two years and the majority happen in the first three. Mike was at 2 years post-radiation. The tumor was noticed at 2 years post surgery but until it showed growth, it wasn't investigated further.

So far no other organs are definitely involved but the PET scan did show a hot spot in the lungs where there are lesions that have been stable in size for more than two years. That doesn't mean they are or aren't cancer, only time will tell. We've had other spots look suspicious on CT scan but show negative on the two PET scans.

Hope I've answered all the questions....we're still in investigative mode but have, to date seen, in addition to our ENT: 2 radiation oncologists and 1 medical oncologists. In the next week we add in a second medical oncologist, a vascular surgeon (who is determining the status of the carotid artery as well as putting in the chemo port) and a gastroenterologist (who is putting in the PEG).

Sending everyone HAPPY HOLIDAY WISHES!!!

Hi Donna,

Welcome to OCF it's a great group of people who really wish we weren't always welcoming new members. I haven't gone to your website yet, but I do intend to.

It sounds as if you have covered a lot of bases and I couldn't go without asking if you have checked into Investigational Trials. I know they aren't for everyone but might be an option.

There is a listing in the main body of this site that will take you to lists of trials. Your oncologist may know of what is the latest also. There are many places around the U.S. that participate in different trials. Some companies will even help with the expenses involved if you qualify.

Just a thought since it seems like your doctors have looked at all the other options.

Please continue to keep us updated.

Take care,
Dinah

Thanks, Dinah. I think at this point they feel that the trials were follow negative results from the currently scheduled treatment. Fortunately for us, we are in the Tampa Bay area and have Moffitt Cancer Center there and they are covered under our HMO. They do have a couple of trials and we did consult there so it the results are good with the rads/chemo guess that would be the next step.

Donna

Donna,
You and your hubby are in my prayers...question for you. My husband is 4 months post surgery for SCC tongue. Modified neck dissection both sides were negative. He developed a swollen gland same side about 1 and a half weeks ago. His oral surgeon gave him antibiotics for what he thought was an infection. Yesterday, we went to the University of MD for another disease Dan has (PVL) for a follow up. We asked this doc to take a look at Dan's newest CATscan and he said without hesitation that it was cancer and needed to come out now! What a shocker and I know you have been there. My question is I have read where some people just have radiation and some have radical neck dissection and radiation. Do you know why they do one versus why they do the other.

Brian - maybe you have insight into this? We are trying to get a quick PET scan, meet with the oral surgeon tomorrow and hopefully get referred to John Hopkins. The U of MD surgeon will be out of the country for 3 weeks.

Any help would be greatly appreciated. Our oral surgeon told us last week that this was most likely an infection and would be highly unlikely to be cancer. How can two docs look at the same CT scan and have such differing opinions?

Thanks,
Debbie

{{{Deb}}} So sorry to hear the news but hopefully they caught it early.

Interpreting scans is an art as much as it is science, I think that's why so many of us seek second opinions. That said, has anyone suggested a biopsy to be sure that this is cancer? Just a thought....

As to the whys of the neck dissection, from what I have read and been told it is the best method of ensuring that no cancer cells are left behind. For example in hubby's case, if they had done a radical neck dissection on both sides, there is a good chance that the current recurrence wouldn't have happened (since the nodes would have been removed). Radiation works on the tumor cells. That said, if a cell survives the radiation the resulting tumor is harder to kill since it is somewhat radiation resistant (this was something we just recently learned).

Don't feel bad about the infection. Mike was seeing an oncologist about another tumor marker in the blood when he discovered his swollen lymph gland. That doctor, the PCP and the general surgeon ALL felt that it was just a swollen lymph gland and would go away. Only after it had grown in size did the surgeon opt to remove it...and thus we started our journey.

BTW, I think you may have sent me email. I'm WAY behind in replies right now as we get through the holidays, a heavy work schedule and all the doctor appts. Will answer though!!!!

Keep us updated and don't lose hope!