Squamous Cell Carcinoma -Survivor

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Hello Mark, My husband was just diagnosed with Squamous Cell Carcinoma in a small tumour at the back of tongue that has spread to one lymphn node in the neck. I see that you are a 10-year survivor of oral cancer and am wondering what kind of treatment you had - I presume an operation and after, did they radiate the area... did you also take chemo therapy? Would appreciate hearing from you.

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Backtohealth

Steffani: Vanilla Ensure was the only thing I could do for nutrition when it was really bad. I tried to force down as many as I could in a day, but at the worst point I could only get 2-4 down a day. I lost a LOT of weight. It gets worse as the radiation continues. The swallowing and pain does get better slowly about 2-3 weeks after the radiation and chemo is over. Make sure your friend is getting plenty of water, and that his dentist is involved for flouride treatments. Talk to his doctor about pain management. At the worst point, I was on Duragesic patches (they come in several sizes based on pain level) to bring my pain down to a lower level, and then supplemented with Roxicet (Oxycodone and Acetaminophen) during the day, and Morphine at night. The Roxicet and Morphine are both liquids, so they are both better than pills which I could not swallow. The pain medication made a lot of difference!

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Steffani

Did you have the peg tube? My friend just got the peg tube put in...he's in horrible pain from just having that inserted...he can barely eat and his weight was already low so the doc said he had to have the tube put in...he’s down to 149 pounds from 156 and still has 4 more weeks to go...I'm going to ask his doc for the pain medication you were taking...I hope it helps...this whole thing is a nightmare...the tumor is still on the side of his neck...the doc said after week 4 it will flatten...thank you for your help...I just hope this whole process works and he goes into remission...sometimes its very hard to stay positive but I'm trying for his sake...

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Backtohealth

I did not have a tube put in. I went from 250 to 170 pounds, but I was very active from martial arts so my doctor and I decided to try without it. As the treatment progressed, I could not get any solid foods down, and existed on water and Ensure. At one point, I had to go to the emergency room for fluids since I got dehydrated. That was a bad experience, and is why I always stress drinking lots of water. My lump started getting smaller after about 4 weeks of radiation, and was gone by the end of the 5th week. Do talk to the doctor TODAY about strong opiates. I could not have imagined going through the treatment without Duragesic patches, oxycodone liquid, and morphine liquid. Weaker drugs would not have been enough! Just be honest about your feelings and be supportive. Your friend will probably sense it if you are trying to fake being positive, and it may make him worry. Just be there for him. Your real feelings of caring are what he really needs.

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Steffani

If my friend had been heavier, he wouldn't have needed the feeding tube, he can't afford to lose any more weight...I'm going to ask the doc on Wednesday...that's the doc meeting day for friends and family about those drugs. At what point in the process did you start to take them? I have them written down in my wallet...thank you very very much!!!!!!!!!!!

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Backtohealth

I do not recall exactly, but it was somewhere in the second week. We raised the dosage in the fourth week, just before I started the second round of chemo. The dosage went back down about two weeks after I finished treatment, then back up when I had the neck dissection. It went down again about two months after the neck dissection. I was on just morphine and oxycodone for about four months after the dissection while I healed from the dissection and radiation and chemo. Then, one day, just like my doctor said, I felt that I didn't need the pain killers any more, and stopped. No addiction or withdrawal problems because my doctor and I kept the doses as low as possible. Again, I could not have gotten through the treatment without proper pain management.

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Steffani

So you had a neck dissection after the chemo and radiation? Was it because your chemo and radiation didn’t work by itself for the cancer? They told my friend that they wont know if he has to have surgery until they see if the chemo and radiation work on the cancer...I wonder what test they do to see if its in remission...is it the pet scan, MRI? I want to ask a lot of these questions to the doc, but with my friend sitting there, I’m careful as to what to ask in front of him. He's down enough as it is...don't want him thinking to far ahead...I think I'm learning more from you than the doc sometimes...

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Marley

Steffani, I am sorry your friend is going through this. My friend Rod was diagnosed last March stage 4b. He had a large tumor on his tonsil and several lymph nodes involved. He had 35 radiation treatments and 3 rounds of chemo.He did not need to have surgery because he had a complete response to treatment. He had several "checks" by his oncologist & radiologists through out tx.His tx ended in July and on November 1st (radiation keeps working for a while after completion)he had a pet scan which revealved no cancer. He is doing very well now one year later. It took a few months to be able to eat & taste but it did come back. The dry mouth is the worst but it got a little better. He is struggling to gain weight & continues to drink protein drinks in between meals.Your friend can beat this and he may not need surgery either.If I can be of any help just please ask.Tell him to be patient after treatment, recovery can be a long road...prayer also helps ALOT! Good luck & God bless!~Marley

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Backtohealth

Thanks for the compliment. I feel that helping others is my way of giving back for all of the wonderful care I was given. My ENT said that it APPEARED that the radiation and chemo were a complete success. He said that the surgery was really my decision, but that he recommended it. The way that he presented the case for surgery was thus: If it appears that chemo and radiation got it all, they PROBABLY did. However, there may be trace cancer left over that the chemo and radiation did not kill. Removal of the lymph nodes, and a biopsy following are the only way to be sure that the cancer is gone. He said that only a few people need the surgery because radiation and chemo did not get everything, but without doing the surgery, it is impossible to tell who are the people who needed the dissection and who did not. I am personally glad that I had the surgery because it gave me some peace of mind regarding my condition. Keep in mind that I was stage IVA and you need to adapt to your friend's different situation. Find a medical librarian and have her or him direct you to some peer reviewed literature regarding neck dissection after radiation and chemo and effects on long-term survival.

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Steffani

so, in your opinion, going through all you have with this, if you were even stage 3, which my friend is, would you want a biopsy of the lymph nodes even if they tell you that the radiation and chemo get it all? i guess its really only the true way of knowing if it worked like you said....what are the survival rates with a neck dissection verus just chemo and radiation? probalby a loaded question but maybe you know the answer to that one...thanks again for all your info on this..its been a GREAT help!!!!!!!!!!!

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