Update:

Hi everyone,
It has been a few weeks. On 8/11/14 my brother did his surgery- his surgery was 11.5 hours long. The surgery was re-resection of the tongue, skin graft from his thigh, forearm graft to do the free flap and a neck dissection. When the doctors got out of the surgery they said that he did wonderful. We got the pathology report back on 8/18/14. The good news was that the tongue was cancer free (he previously had removed part of his tongue on 6/24/14) the bad news was that it has spread to his lymph nodes. 3 nodes out of 10 came out positive. There was 1 positive lymph node in level 1 and 2 positive lymph nodes in level 4. The doctor said he will need to do radiation and maybe chemo (they said they are going to discuss this with their tumor board and we will meet soon.) Today is 10 days after the surgery and he is leaving the hospital without the trach and feeding tube. They took the feeding tube out on 8/19/14. He has had a couple ensures to drink and a little mashed potatoes. Please give me all your suggestions. Has anyone had 3 positive lymph nodes? Also, what are some other good ideas for soft foods? Is radiation going to be horrible or did he beat the hardest part?

Oh yeah one more thing the lymph nodes were "microscopically" they did not show up on CT scan. When the doctor did the surgery he suspected one but the pathology report revealed 3.

Hi Ak. Do you know if it tested positive for P16? The prognosis is generally better and it is known to respond extremely well to the radiation chemo combo. I wouldn't get too hung up on the staging or the number of nodes, they'll take all that into account when they plan the treatment and there's nothing you can do to change it. For now the focus is on getting him ready for treatment.

He will probably have seen a dietitian by now with relation to recovery from surgery, he should see another as part of the planning for his treatment. He should also be advised to see a dentist. Christine has a good list of easy to eat foods here. (I like the soft scrambled eggs with cheese!) List of Easy Foods

Radiation and chemo is no picnic, but every journey is different. People respond differently to the same treatment, with surprisingly different side effects. Your brother is very young, most of the patients we see are middle aged or older. He'll be stronger from that point of view, and the complication of the recent surgery will be closely managed by the doctors. In any case he is in for a long hard road over several months, but it is a very survivable treatment and the prognosis will be better than many other types of cancer.

Your brother is about to get bombarded with information, and I found the doctors only had a limited time to explain it all. It helps to take notes, you can look things up later and have a list of questions to bring next time. Its all a lot to take in. If he can bring someone with him its also helpful to have another set of ears.

Best wishes to you and your brother. Let us know if we can be of assistance.

I am confused why they are saying radiation and chemo and removed the feeding tube. That makes no sense to me.

I would use that level 4 node as a motivator to keep things moving rapidly. I don't know the pathology of that node but it's getting dangerously close to the lungs.

[quote=Uptown]I am confused why they are saying radiation and chemo and removed the feeding tube. That makes no sense to me.

I would use that level 4 node as a motivator to keep things moving rapidly. I don't know the pathology of that node but it's getting dangerously close to the lungs. [/quote]

Hi uptown- they removed the feeding tube because he can now eat on his own. He just did the big surgery on 8/11 wouldn't it be too soon to do radiation? I worried about it getting close to the lungs too. They did remove them. Does that make a difference?

AK,

I believe from your previous posts, that your brother had a nasal feeding tube - is that correct? Then it would make sense to remove now as long as he is eating.

You stated that the doctor suspected one node, but ended up with 2 others that were cancerous. You cannot always tell by a visual exam that it is cancerous, so there could be others. But any others should be killed off by the radiation and I'm glad his doctors are recommending radiation - better to do this now before it could spread even more.

It is difficult to eat after surgery, and even more so after radiation. I made a lot of smoothies with yogurt, fruits, milk or juice, and of course ice cream! I also added whey protein powder. He can probably eat eggs, soups, yogurt, vegetables (cooked until real soft). Its more about the texture and getting enough calories and nutrition. If you have a blender, use it.

During radiation his doctors may recommend a feeding tube (called a PEG tube, which is inserted surgically into the abdomen area). Swallowing may become very difficult if not impossible.

I didn't have a peg tube and my doctors didn't even mention it. Because of the areas that were radiation on me (sparing the inside of my throat), I was able to swallow - that is once I got past my painful mouth. I did loose a lot of weight but did manage to drink a fairly healthy diet.

[quote=ak123] Hi uptown- they removed the feeding tube because he can now eat on his own. He just did the big surgery on 8/11 wouldn't it be too soon to do radiation? I worried about it getting close to the lungs too. They did remove them. Does that make a difference? [/quote]

I wasn't sure for your post which node the doctor felt would be cancerous versus the 2 the doctor was surprised about after pathology. The other 2 would indicate to me they didn't show up on any scans. That would make me suspicious of others and I would think radiation would be necessary.

Once squamous cell carcinoma gets a good blood supply, i.e lungs, it takes off. That's why I would want the most effective treatment available, which is chemoradiation.

As far as how quick after surgery, it depends on how extensive the surgery was.

Just to add a few things.....As said, further down the lymph chain are negative factors, as well as having 3 lymph nodes involved, so believe they would recommend Chemoradiation or at least radiation. Ideally, the total treatment package for SCC, such as surgery, Chemoradiation, is best kept under 100 days for better outcome, but depends on healing, maybe 4-6 weeks, scheduling, pre-treatment requirements.

It's good your doctors are on top of things. All the best

[quote=OzMojo]Hi Ak. Do you know if it tested positive for P16? The prognosis is generally better and it is known to respond extremely well to the radiation chemo combo. I wouldn't get too hung up on the staging or the number of nodes, they'll take all that into account when they plan the treatment and there's nothing you can do to change it. For now the focus is on getting him ready for treatment.

He will probably have seen a dietitian by now with relation to recovery from surgery, he should see another as part of the planning for his treatment. He should also be advised to see a dentist. Christine has a good list of easy to eat foods here. (I like the soft scrambled eggs with cheese!) List of Easy Foods

Radiation and chemo is no picnic, but every journey is different. People respond differently to the same treatment, with surprisingly different side effects. Your brother is very young, most of the patients we see are middle aged or older. He'll be stronger from that point of view, and the complication of the recent surgery will be closely managed by the doctors. In any case he is in for a long hard road over several months, but it is a very survivable treatment and the prognosis will be better than many other types of cancer.

Your brother is about to get bombarded with information, and I found the doctors only had a limited time to explain it all. It helps to take notes, you can look things up later and have a list of questions to bring next time. Its all a lot to take in. If he can bring someone with him its also helpful to have another set of ears.

Best wishes to you and your brother. Let us know if we can be of assistance.[/quote]

Hello,
He is tested negative for P16. He is a non-smoker and casual drinker. The reason is "unknown" as to why this happened to him. He met with a dietican a couple months ago and he said he felt like he went for nothing as he says he knows what to eat but it is hard to eat after the surgery. He thinks a lot of things taste different now. I know that we have to get him into a dentist soon too. Did you see a special dentist? or was it your original dentist office? we have been taking a tape recorder to every meeting with the doctors lol. there has been so much information that we have definitely been bombarded.

[quote=Susan2992]AK,

I believe from your previous posts, that your brother had a nasal feeding tube - is that correct? Then it would make sense to remove now as long as he is eating.

You stated that the doctor suspected one node, but ended up with 2 others that were cancerous. You cannot always tell by a visual exam that it is cancerous, so there could be others. But any others should be killed off by the radiation and I'm glad his doctors are recommending radiation - better to do this now before it could spread even more.

It is difficult to eat after surgery, and even more so after radiation. I made a lot of smoothies with yogurt, fruits, milk or juice, and of course ice cream! I also added whey protein powder. He can probably eat eggs, soups, yogurt, vegetables (cooked until real soft). Its more about the texture and getting enough calories and nutrition. If you have a blender, use it.

During radiation his doctors may recommend a feeding tube (called a PEG tube, which is inserted surgically into the abdomen area). Swallowing may become very difficult if not impossible.

I didn't have a peg tube and my doctors didn't even mention it. Because of the areas that were radiation on me (sparing the inside of my throat), I was able to swallow - that is once I got past my painful mouth. I did loose a lot of weight but did manage to drink a fairly healthy diet. [/quote]

Hi Susan,
You are correct my brother did have the nasal feeding tube after his surgery. Oh-I see what you mean- the peg tube is totally different. I hope his radiation goes well where he wont need the peg tube. I feel so bad that he has already been through so much. Thank you for the suggestions on what to eat- yes, we do have a blender and also bought a huge brevell juicer. He has had a couple of juices.