Hello all, I have been quietly visiting this site and have only posted occasionally. My brother finished his 37 radiation treatments (plus three rounds of chemo) less than two months ago. He has Stage IV base of tongue cancer.

About a month after the radiation was finished, he developed a hard lump in his neck. The doctors thought it was not something to worry about--until last Friday when they gave him a PET scan. He met with the doctor (surgeon) who performed a biopsy, and found that the lump is indeed cancer. He's supposed to meet with his team of doctors (surgeon, ENT and radiologist) on Friday to discuss options.

Among my questions:
Has anyone in this forum had a similar experience with the cancer returning so soon?
Is this really grim?
Any advice about what to ask the doctors?
Is it too late to get other opinions?
Any advice or hope anyone can offer is much appreciated.

Thanks so much for being here--believe me, I regularly visit this site and have learned so much, especially how courageous you all are.

Hi,
I am sorry to hear of your brother's reoccurence but if you have been reading this site for some time, you know the first question that we are going to ask are 'Is/and was he being treated a major cancer center. If not, you need to get to one. If so, you need to find out what the drs say for next treatment option. You also may want to get second opinion. Johns Hopkins is not far away. I'm not a doctor, but I but I think they will do a neck dissection. I'm wondering why they didn't do it before.

Take care,
Eileen

Hi
I'm not a doctor but I would think this was not a reoccurrence. My husband also had stage IV base of tongue cancer. The way they found it was he had a swollen lymph node. The internist thought it was an infection treated it as such, a couple of months later a general ENT looked at it did a biopsy, came back negative, five months later at my husband's request the ENT did another biopsy, came back negative but this time he did a CT scan acted like he wasn't that concerned but there was another unrelated issue that he was concerned about so he had him have an MRI, flags went up and he had us see a surgeon who initially didn't say it was probably cancer but you could tell that's what he thought. After many more tests he did another biopsy, came back questionable for squamous cell, went under to take out his tonsils (only because he couldn't see any obvious place) once on the table he touched the base of his tongue with his finger and off fell a little piece which he biopsied and that was it. We're thinking the first doctor didn't hit the right spot (there was blood in his sample).

After his treatment there still was a little hard knot that could have been scare tissue but the surgeon wasn't going to take any chances and said he needed to have a neck dissection to make sure. The neck dissection was performed about two months after treatment. By then his neck was just about healed from the radiation. The nodes came out clear but the there was still microscopic cancer cells in the periodnodal tissue. He said he believes he took it all out. He was happy he decided to do the neck dissection and so were we.

I guess the point I'm trying to make is it was probably not a reoccurrence. For some reason the radiation and chemo didn't kill it and we are happy we had the surgeon we finally ended up with. Its been almost 8 months since the dissection and nine months since the end of treatment and the check-ups have been good. We have learned to take one day at a time.

Good luck,
Teresa

Thank you for your responses. Eileen, my brother is very stubborn about sticking with his team of doctors (who are not in a CCC, much to my dismay).

Teresa, you offer just the encouragement I was hoping for. It's hard to believe that after such agressive treatments not all the cancer was destroyed. But I suppose your explanation is better than a recurrence. At any rate, he meets with his team of doctors tomorrow. After your husband had the neck dissection, did he have to have additional chemo?

I'm glad your husband continues to have good checkups, and I wish you both the best.

Thanks again for the information.

After my husband's neck dissection he did not have any further chemo. His treatment prior to the neck dissection was 7 weeks of radiation with the first and fourth week in the hospital with a 96 hour drip of chemo (I think Cisplatin and Taxol). I believe it was explained to us that the chemo gives the radiation a boost and kills any microscopic cancer cells that may have left the main site. The lymph nodes are supposed to catch the bad cells and in a lot of oral cancer patients they do not find out they have oral cancer until they have a lump on the side of their neck. We didn't ask and they didn't explain why they were in the perinodal tissue. The next visit I'll try and remember to ask.
The two other person in my husband's group also had neck dissections a couple months after their treatment and one did not find anything and the other one (who had lumps on both sides of his neck) found one side clean and the other side still had cells which they removed. Both are doing well. Neither of them had any further chemo.

During my husband neck dissection the doctor stretched the inside of my husband's throat because he had said right after treatment that his throat seemed tight. He made it through threatment with a feeding tube or peg but just drinking Mighty Shake Plus and probably the scare tissue his throat may have closed up a little. Eating is a chore because of the salvia issue but he can eat.

Teresa

Could you convince him to go for a second opinion? Doing that does not necesarrily meanhe has to change doctors, especially if their opinions concur. Most doctors welcome them. Just a thought.

Take care,
Eileen