Hi There!

My husbands surgeon has told us that he will not need radiotherapy as he made a wide/ deep incision,removed 35% from the base of the tongue and some off the side. margins are clear, nodes are clear, he took samples from all the surrounding area they came back clear too, we were told he was stage 2 when they thought the tumour was just on the side of his tongue, THEN (during surgary) they found the Primary? (sorry not clued up on the lingo!) on the base of his tongue they removed approx 6cm.
by reading the site I guess that makes him stage 3?
Am I missing something here? am I worrying over nothing?
Also Richard is sleeping alot.
He has asked me to ask you all if this is normal he know it is only 3 weeks after the op but he is sleeping between 14-18 hours in a 24 hour period.
Thanks in advance
Sammie and Richard

Sammie, If he is still taking pain meds they will cause more sleepiness. The stress of it all can also make a person tired. Depression which is common post treatment is the one thing to keep an eye out for. If he is up to it get him out for walks.

You haven't said that he was treated at a comprehensive cancer center or major hospital. It is worth considering a second opinion about the radiation. This cancer is noted for coming back due to microscopic cancer cells that surgery alone could not reach. I am not trying to second guess his doctor, rather for you to be certain. Radiation is no fun and if you can avoid it that is great. On the other hand you do not want this coming back!

The way I understand it the stages are determined by number of metastases. My husband was dx stage III because he had the primary (base of tongue stage one) and 2 lymph nodes (stage 2 one node, stage 3- 2 nodes, and stage 4 would be more nodes or other metastases).

This was how the oncologist explained it to me when I asked. So stage one means that there is a primary source and no metastases.

Anyone feel free to correct me if I am wrong. I really did not look it up, just took the docs word for it.

As for the sleeping alot, it is not unusual for any surgery to cause a body to shut down for long periods of time. Sleeping is one of the ways the body heals itself and, depending on the amount of trauma the body feels as a result of the surgery, it will take as much sleep as it needs to rebuild and recover itself.

I would monitor him though and ask the doctor about how long it should take for him to start feeling any improvement. At least that way you can have what I call panic points. Points that define when to worry and when to call the doc, when to adjust something and when to push him to do things, etc. By knowing the things to watch for I find that I worry a whole lot less about what is happening because I am always aware of what is considered critical.

I hope that maybe this helps a little.

Cindy

Hi There,

Richard was treated at a major a University hospital in Florida, so far we have been very happy.......... but hey what do we know we are new to all this!
At the moment Rich is on 1 pain med 1 antibiotic.
I guess I will put a call in to his Doctor tomorrow and start asking questions!
Many thanks
Sammie

Netteq........staging is not just a function of the number of mets. You can have a late stage lesion that is the primary leasion by itself, without mets to other areas. For instance a stage three lesion could be one in which the primary is more than 4 centimeters in size and has not spread. We have a page in the main body of hte web site on staging at http://www.oralcancerfoundation.org/facts/stages_cancer.htm

In the boradest sense it is a way for doctors to talk to each other about a patient, and by saying that he is a stage 2 or whatever, the other person already knows the extent of the disease. It also helps, again in general terms, for determining the appropriate treatment plan for a paticular patient based on successful treatments of other patients with the same staging. Neither of these are absolutes, but staging offers a general means of describing things from extent to treatment to survival statistics.

Peresonally I prefer the TNM system for describing patients and disease - also discussed on that same page in the web site.

I am one of those with a stage III/IV tumor that had no other mets or lymph node involvement.

With a stage III tongue cancer, if it were me, I would strongly consider radiation. Tongue cancer can very aggressive, more so than tonsil cancer. It's far better to get it all now. Have you actually spoken with a radiation oncologist? I take it that he didn't have chemo either? Multi-modality treatment is usually the route they take - see

http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf page MS-11

Antibiotics can cause a thrush bloom so be on the lookout for that as well.

Sleeping a lot is a good thing. It allows the body the time to heal. If it continues for an extended time it can also signal depression.

Sammie,

How do they know the nodes are clear? Did they do a neck dissection? Heather's surgical margins were also clear. She did have it in 4 nodes, but there was no perineural involvement, no extracapsular spread and her tumor was well-differentiated, which were all supposedly good signs that the cancer had not spread beyond the nodes.

She had aggressive surgery in Sept, started RAD in Oct, had a recurrence in March and died in October. I'm not saying this to scare you....well, yes I guess I am in a way. You need to be scared enough to seek a second opinion. Base of tongue SCC is about as bad as it gets. You want to attack this with everything you can in the first go-round, because you don't usually get a second chance.

If Richard had a neck dissection, I wouldn't worry as much. But if he didn't, how can the doctor say the nodes are clean? Be aware, be proactive and get that second opinion.

Rosie

Okay....I went back and read your previous posts. Should have done that first. I see that Richard did have a neck dissection. You said a partial dissection. Not sure what you mean by partial. Was it a modified radical? If so, I will withdraw some of the panic I expressed in my previous post, but I still strongly recommend a second opinion. Gary is right, Richard should see a radiation oncologist and it would be a good idea to see a chemo oncologist, too. You need to have the opinions of all 3 types of doctors, not just the surgeon. They all see things in a different light.

I wasn't exaggerating when I said base of tongue SCC is one of the worst. You don't want to take any chances with this.

Rosie

Please get a second opinion. About 6 years ago my mom was diagnosed with oral cancer, only to be treated with surgery. Had a couple small reaccurances, that were also just removed with clear margins. She was given the 5 year "your cured" speech by her ENT. Only to be diagnosed by same ENT with a stage 5 a year later? As we all know this doesnt happen overnight. He missed it. He tried to tell us it wasnt connected, it was something new. We shouldve went for the second opinion. Did we? NO. My mom went through the chemo and radiation. But she died within 9 months of treatment. It's all still very new to me to be without my best friend. But in telling you her story i hope it will scare you into getting that second opinion. I am still looking for some sort of peace to get through this. I want to go sit down with her ENT and get some answers but i am not ready. For your peace of mind get that second opinion.

I have read all your posts about 10 times, and cried the same amount of times...... Richard was diagnosed while we were in the USA,(we spend 4 months a year here sometimes 6) we paid for everything ourselves, vacation insurance does not cover it as he could have flown back to the UK.
But he wanted to be treated straight away, no waiting, no repeating tests, and to tell you the truth I agreed with him....still do....it was the right thing to do at the time.
But it is time to go back to the UK and carry on treatment there.
Can anyone recommened a good max fax Doctor either in Staffordshire or Derbyshire?
All the best
Sammie

Sammie
It's normal after major surgery to sleep, well it was for me, I think the body needs to take stock.
The max fax docs in Leicester are all brilliant, maybe thats a bit far to travel? Mail me if I can help more..
Sunshine... love and hugs
Helen

Sammie, yes, go to the UK and get treatment there or at least recommendations about radiation and chemo. fwiw, I am stage II, a smaller tongue tumor than your husbands and no nodes involved and I still got what I consider a reliable and strong rec. to have chemo and radiation after surgery. Another thing I was told is that with a large tongue tumor that is anywhere near the middle of the tongue (sounds like a 6 cm tumor might have to be?) you actually can't be entirely sure about no mets to nodes on the neck unless you have a neck dissection of some sort done on both sides.

Brian,

Thanks for the info. I am always wondering if I am ever really getting the straight story.

For example, when Harry was diagnosed, the doctor told him he had an 80% of recovery/cure/ whaterever you want to call it. I wondered about that and I went back and did my own research.

The doctor said that we had to make it through the 1st two years but he failed to mention that it is most likely to recur. That truly pissed me off.

I have not told Harry about the information I have found. I cannot see a reason at this time to give him some other piece of depressing news. But at least I know the reality of the situtaion and I am as prepared as I can be I guess.

I am not sure what size his primary tumor is/was cause I didn't know I should ask. I guess that is my next question when I see them.

Thanks again for the information. :-)

Cindy

Hi all,

From what I was told during Richards op (by his surgeon), I understand that the "c" that was on the base of his tongue growing and dying rapidly, he said it was trying to find a good blood supply but had not managed it, the dead cells had started to get infected and there was some pus, everything was "surface" (whatever that means) the right side of the tongue had a maximum invasion of 5mm (just read that from the results I asked for!)
Hope that helps clarify some stuff!
Sammie & Richard

netteq ...at this point it dosen't help you to know what WAS, only what you can do right now. Yes, the first two years are the period when recurrences happen the most frequently, but you can't do much with that info. You will always be looking for this whether you are 2 years out, or 7 years out. It will always be part of your life mentally and in the realm of follow up testing. But the past as a predictor of the future is not a firm basis for your actions. My dad was a pilot in 3 wars. I have a picture of the inside of his cockpit during WW2, and on the panel is a little note stuck there that says " Eternal vigilance, or eternal rest." While a strong statement, it applies to your recalls in the future.