would like to know what to call this ? what do you call "a tumour that is wrapped round voice box tongue organs and lymph nodes?"
lve read about cancer in the nodes on the base of tongue and in the lymph nodes,but if its wrapped round the above organs is it the same as being in them,i have googled alot but still unclear on alot of it,is it worse or is it better to be on the outside than in the actual organs? has anyone had this same diagnosis and what was the outcome? was it operable or not, what treatment were u given...any information would be greatful as i havent a clue..:-)

Is it SCC or another type, and did they say there was a primary? I would think it is what the primary cancer is, but with multiple organ or extensive cancer involvement, plus other features like nodal involvement, carotid involvement, extracapsular extension, pernineural invasion, Lymphovacular invasion, and others. SCC, If it's inside some organs, structure, like lymoh node, it's more contained, and usually follows a certain path. outside it can go anywhere. Mine went outside the lymph nodes, and dr called it free form or roaming cancer, plus I had PNI, and LVI, but haven't found any other terminology, other than being metastases. What have the Dr's suggested as treatment?

Kaykay,

As I mentioned in your other thread, my brother had a similar diagnosis. He had a clearly identifiable tumor in his esophagus that had tendrils or streamers of cancer that emanated from it that wrapped around the voice box.

Initially they thought it was just the tumor in the esophagus and did surgery to remove that. It was during surgery that the noticed the tendrils. They could not see these in the scans. They were at the end of a long surgery and could not go after all the tendrils at that time so they got what they could see and closed. After that they had him go through a full round of IMRT radiation to the voice box to get what remained of the tendrils.

It was rough going with both surgery and radiation but he made it through and is one year out with clear scans.

A tumor is usually part of at least one organ - in the area it exists... This would be it's originating location, and could possibly extend out from to include other areas. For example, it started on the BOT, and then grew to include (wrap around) voice box and into the neck area to include nodes. That would be my explanation as tumors generally originate from somewhere. Occasionally (rarely) a primary will resolve itself - Possible immune response, but most times there is a primary - which originate from one location. They can grow outward to include other areas (one large mass), and / or seed to other locations (one mass, with other smaller tumors elsewhere).

If it is one mass, it sounds very extensive. Is it better? Cancer is bad - regardless - the thing that might make it have a better outcome would be if it was HPV positive. Because that generally responds better to rads and chemo, but if it is that extensive they may want to operate to debulk it first (or do rads and chemo then remove any remaining). If it is HPV negative then they may want to try and remove as much as possible first and then follow up with rads and chemo. (basically the same treatment for both) smaller BOT tumors with nodal involvement are often left and not operated on just radiated and treated with chemo.

Survival of cancer depends on many factors; treatment plan, where you're being treated, your dr., your health, your lifestyle and overall aggressiveness of the cancer. We've lost members who started with a stage 1 cancer, and there are many surviving who started with stage 4. So many factors come into play. And even knowing someone who has the same tumor, location etc who survived doesn't guarantee the same outcome for others.

Best thing someone can do is get the best treatment, at the best hospital (preferably a CCC), and do all that you can on a life style level (proper nutrition, giving up smoking etc...) to help your body fight, and heal.

best of luck. Hope this helped some.

thanks so much for your time,i think i said in another post that he had a scc removed from lip 12 mnths ago,his 6 mnth check up was fine,now this was his 12 mnth check and it was picked up becuse his had a bit of tightness in neck area..so l assume that its come from the lip where it started originally.

HI - okay... I just read your other post so I am going to try and answer both here.

It is very possible since you said reconstruction from SCC of his lip, I'm assuming the tumor was quite large. Otherwise they remove the area and depending on location and size that's often it. (external SCC of the lip is often very treatable from what I've read - SCC inside on the oral mucosa can be a different story as it sometimes moves quickly). I believe Christine here has experience with this as it moved from her cheek or gum to her jaw etc... She is a three time cancer survivor, and I think Eric's cancer started in a similar location...

It sounds based on the involvement of that maybe what they found on his lip, may have been an extension of the other mass.

I know what the drs are saying and it sounds grim but I echo what other's have said. Have him go to the top hospital for cancer in his area. Radiation and chemo should work to debulk it or possibly kill it, and then maybe if there is residual cancer there then it will have less impact if it has to be removed. Mind you this is up to him, but I would push for another opinion.

We have social medicine here in toronto. I think our systems are similar. He should be able to ask for a referral from his family dr. Research for him who the top guy is for his type of cancer in his area.

He definitely needs more info though. On the lip did they get clear margins?

They must have scanned him, did they? What did it show?

Did they test the tumor to determine if it was HPV positive?

best of luck. and hugs.

The new or multiple cancer may be caused by the concept of "Field Cancerization" in squamous cell carcinoma in the upper aerodigestive tract when exposed to carcinogens, and can be independent of the first. Anyway, glad your doctors are on top of it.

so far a mri cat scan and pet done biopsy also done and have heard nothing till the board have there meeting reardin the outcome..the scc was on his lip (the outer) and yes they got clear margins,just waiting waiting ,,and educating myself with all that i can

Best of luck. A clear picture from the dr should help, but do not take only one drs word as the only option do get more than one opinion. Hugs!