My husband has tongue and neck cancer. He has been through 9 weeks of radiation therapy and 3 rounds of in-hospital chemo since the end of January. After finally completing these processes, he has now had a CT scan and biopsy. The ENT surgeon tells us there is no option of surgery as the cancer surrounds his carotid artery and the surgery would be too dangerous. Of course, we are devastated as this means there is nothing that can be done at this point! I have an appointment at University of FL with an ENT there to get a second opinion. Has anyone ever experienced this and do you have other suggestions? We were so hopeful that the aggressive approach of chemo and radiation first would be successful and now to have our hopes dashed. My husband has done so well to cope wtih all of the problems, PEG tubes, Mediport, weight loss, pain, etc. He suffers the most from the ear pain and there seems to be no relief for that. Our ENT is not very responsive to talking -- following the biopsy, he was in such a hurry and I basically had to tell him that he had just given my husband a death sentence and I thought he could spend a MOMENT to discuss it with us. That stopped him, finally, and he stayed the length of time we needed. There are still so many unanswered questions though and I don't feel he will give us any positive feedback. So, I'm turning to all of you for suggestions and comments. It appears, from the biopsy/ct scans, that the cancer surrounds 2/3 of the back of my husband's throat and the back 1/3 of his tongue. Since radiation/chemo, he is speakingbetter and does not have much throat pain; more the ear. I have asked the ENT if there is something to be done for that and he only suggests pain medicines. These do not help -- they take his mind off of it but do not decrease the pain as it is the nerve signal, not actual addressable pain. I have asked about a pain management approach such as I had for my neck some years ago with a cervical epidural and the ENT has no suggestions. This is my next call, to a pain management specialist. Any comments or suggestions will be welcome. We have had such a wonderful oncologist and radiologist and now to find that the surgeon is not responsive is disheartening to say the least. Thank you.

You should seek another opinion. Ask your ENT to provide some names. My surgeon expected that I would want to seek a second opinion. I ended up at MD Anderson.

I thought a radical neck dissection took all organs from the neck, maybe it's just the jugular vein they can take and not the carotid. My dad has total blockage on one side of his neck so it seems you can get by on one artery.

Good for you telling the surgeon to spend more time with you.

I had a pain management team to help with pain from my free flap from my thigh. That was the worst pain I had ever had. They gave me a pain patch that I could also use Hydrocodone with. Durgesic patch is what it's called. It really did normalize the pain for me.

Have they positively said that the radiation and chemo have decreased the tumor size? When is your next scan. How were the lymph nodes? In my experience I would also ask for a chest CT.

Lynn

I got a second opinion for UF at Shands and they were wonderful in explaining and giving me in one day after seeing many doctors my options. I choose my treatment in tampa by mu house but luckily they both gave me the same opinion and I was condisdering UF because they were so good.

Millie,

Click on "Introduce Yourself" in the main menu and go down the topics about 2/3 of the way to a post from "traceemail" that has the title "My mom" her mothers surgeon was in Florida and several other doctors told them the tumor was inoperable and she found a surgeon in Florida that was able to remove all the cancer with clear margins even though it was attached to major veins in the neck. Her post gives lots of information that I think you can use.

I hope this helps. I have read practically all the posts on this site and when I saw yours it reminded me of her situation.

I will be keeping your family in my prayers. Don't give up, get more opinions....but do it quickly.

Danie

Thank you all so much. This gives me some hope. In reading so many of the posts here, I see such a large volume of success stories and just can't imagine that there would be absolutely nothing to be done. I talked to the oncologist yesterday, who has formed a close bond with my husband and he is working on an appt at UF for next week for us. Thank you, Lynn for the information on the patch -- I'll contact the pain management doctors here today and see if we can't move on some relief for him. The oncologist and ENT both seem to think Oxycontin is the only thing that may releive the pain but my husband refuses to go with that strong a narcotic as he wants his mind as clear as possible. He is getting by with Aleve and Percoset (in small doses) but still has the constant pain in the ear. Again, thank you all so much. Danie, I'll go right away to the Introduce Yourself area and read the post there. It just makes my day to have some positive support right now. Bless you all.

Once more. Danie, I read the post and this gives me much hope! Sounds like the patient there had been given about the same options as Rusty (my husband). He has been depressed about all of this, as is certainly understandable (I have been, too) and has been somewhat resistant to the "keep looking for an answer" that I keep pressing. I have printed out these posts and will show them to him tonight, they should certainly give him the optimistic feeling I have gotten from them! We have been lucky that the oncologist is so very willing to take time and is so empathetic; you have to respect these physicians for the hard work they do. Thank you all again and I will check back in with I have more info. If anyone knows particularly who at UF Shands is the "BEST", I would appreciate the information.

Millie

Millie, first off, oxycontin in small doses never affected Frank mentally except for making him happier. last year we were faced with tumor close to carotid, doc said if we can`t do surgery, he`d be dead in a couple months. He had the surgery, and they handled it by tying his carotid artery off below the tumor. Understand, they need to do tests to see that the other carotid provides enough blood flow to the brain..............i`d get a second opinion........Dee

Second opinion is in the works, Dee, thanks. I'll keep in mind the oxycontin issue. Unfortunately, my husband's partner in his band died of an overdose of this 2 years ago so I think that is his main objection to pain medications in general, oxycontin in particular. Of course, he abused the drug but it still creates a big rejection factor for Rusty. After discussing with others, I have decided to go ahead and fill the prescription and, if needed, he'll probably change his mind about it. Thank you, though, for responding and easing my concerns.

Millie,

I am sorry for all you are having to deal with right now. I am glad you have already had so many good responses to your questions. I am hoping and praying God sends you exactly where you need to go for Rusty.

Ed

Hey Millie,
Sounds like your hubby and mine have a lot in common. Dan started with tongue cancer, surgery, mod. neck dissections. Nodes taken were negative, so no radiation. Never had anyone even suggest it. Too bad I wasn't familiar with this board at that time. 4 months later Dan has a neck tumor, radical neck dissection on Christmas eve. The oral surgeon (who by the way was also cut and dry and not extremely helpful since the beginning) couldn't get all the tumor as it was around carotid and jugular. He also said no surgery options, so we were referred to U of MD and a great oncology team with a tumor board. They did 8 weeks chemo/rad and things are good so far. Did your husband have a radical neck dissection for his chemo/rad treatments? Dan's oral surgeon didn't know the extent of the tumor until he did the radical neck dissection.

Also, Dan was having extreme facial pain from the tumor before treatments began and they prescribed Neurontinfor Dan which he still takes and it helps him. It doesn't make him foggy, either. He has been on the Duragesic Patch since treatments began...started at 25 mg. and ended up at 100 mg....has moved down to 50 mg. at this point. Intermittently, he also used Hydrocodone. He would sleep a lot during those last weeks of chemo/rad, but he needed to as it was max rad. and took so much out of him. The patch has helped Dan a lot and he doesn't sleep at all or very little during the day now even though he still wears the patch and still uses Neurontin. I also read the post about the mom who had surgery...Dan and I were a little disappointed that we had been told there were no more surgery options available after they had done the radical neck dissection.
Hope this helps and my prayers are with you!
Debbie