trying to decide on surgery or not and when before or after the radiation and the chemo.
My RO told me they may not want to do surgery after the radiation and chemo, so if I want to do surgery that I need to do it first. My diagnoses is BOT SCC stage I, the nodes are not involved. can someone explain to me the surgery involved, the healing process, etc. HNT Doc advises chemo and radiation first, does this make sense? I'm getting a second opinion but all this takes time and I'm concerned about the delay.
Any advise is appreciated. Thanks!

Ronnie, What surgery are they suggesting? Partial glossectomy, radical neck dissection, both?

I can tell you that the current trend is toward radiation and chemo without surgery. It seems the survival rate is about the same (perhaps slightly better) than with surgery. There are many variables, however.

The above surgeries have risks and leave some long term effects. One benefit of surgery is that lymph nodes can be examined for evidence of microscopic spread. If none is found, perhaps no radiation is needed.

This decision should be made with your doctors in agreement. If they can't then get that second opinion.

Ronnie --

The standard approach for base of tongue tumors at the three top CCCs (Sloan-Kettering, MD Anderson and Johns Hopkins) are chemoradiation first, possibly followed by selective surgery if indicated -- such as cancer remianing in nodes for more advanced stages.

You need to ask hard questions as to *exactly* what would be involved if the surgery were done first -- our ENT surgeon at Hopkins said that b.o.t. surgery would involve a tracheostomy and also, the high probabity of significant impairment of swallowing and speech (needing quite a bit of recovery time and therapy). Thus he very strongly recommended chemoradiation as the treatment for my husband who has Stage IV bot and tonsil (plus two nodes) -- the Hopkins tumor board concurred on this. We went to Sloan-Kettering for a second opinion and the recommendation was exactly the same.

Having said that, chemoradiation is no walk in the park either -- Barry is just at the end and is doing well but it has been a marathon, not a sprint.

Gail

Thanks for the input Mark and Gail. I don't have the benefit of a CCC but at this point I feel my Doc's are working well with each other. I do see that almost everybody reccomends a CCC. Right now I have a HNT, a RO, a ONC and a Dentist. what else does CCC offer that I don't already have?
I've had a CT scan and a PET scan, a Larangoscopy with biopsy and an Endogoscopy with biopsy. Are there more tests that need to be run to better identify the extent of the monster?

Ronnie,

It is good that your doctors all work well together. If they are all at different locations, you are indeed lucky to have assembled them. The Cancer Centers are kind of a one-stop shopping deal. Your doctors would likely present your case to a tumor board and, hopefully, agree on a treatment protocol. Scans and reports would be readily available to all involved and consultations would be considerably easier. I asked my medical oncologist a question about radiation and he called my RO who stopped by. Don't panic if you can't easily use a CCC, but remember one thing. This cancer is very unforgiving if not properly treated. You could take a trip to a cancer center for a second opinion and, and assuming they agree, have the treatment with your current team. I have the connivence of being 20 miles from MSKCC so I just went there. As a final thought, if they are recommending surgery for base of tongue(to the tongue), get a second opinion. Gail is correct on the treatment protocol for BOT.

Glenn

Ronnie,

Welcome to OCF. I have only been around for a while but it appears you may be walking almost completely in my shadow.

On biopsy, it was suggested by my ENT that I have radiation and chemo, that surgery was not necessary. Knowing the killer this can be I just was not satisfied with that decision.

I went to the Moffitt Cancer Center in Tampa for a second opinion. The primary doctor I saw, also an ENT Surgeon, and the others reviewing my case all concurred that radiation and chemo were the road to take. With their Tumor Board agreeing, that is the road I travel today, just beyond the half way mark of my treatments.

I wish you well in your battle. If for no other reason that the peace of mind, I recommend you get that second opinion. I know how much better it made me feel. Also, having the second opinion I know that I did not make a second guess my treatment mode.

Bill

It is worht pointing out, though, that they can't know for sure the nodes are not involved without removing them. There's something like a 30% chance that you can have cancer in one or more nodes and it won't show up on a CT scan. That said, I agree with everyone else that it seems like the standard for BOT os to treat first, with radiation and chemo, and then, maybe, do a neck dissection to be sure the nodes are clean.

Is it possible they just want to do the neck dissection first, not operate on the tongue?

When I first was diagnosed my ENT explained the options I had. Either surgery first and then radiation and chemo or do the radiation with chemo first and then do surgery. If I did surgery first it would be more than one, something about reconstructive, and therapy. So we chose the radiation with chemo first.

I do not know what the normal symptoms are for those diagnosed with bot because I really didn't have any. I went to the doctor to get physicals done the mamo etc. and she felt a lump on my neck. I really didn't notice it but now that it is gone I can understand what was there.

As for what others say about the nodes is true the only way to find out if cancerous is to biopsy. After radiatin and chemo my nodes went down and I no longer had a lump on my neck. But the question was is the cancer gone.. theu couldn't be sure unless they biopsy them and to do this you have to remove them. By the time I saw the ENT both sides of my neck had swollen lymph nodes so we had to have a bilateral (both sides) neck dissection.

It has been a little over three weeks since surgery and I am realizing I still need to take it easy to heal completely. I am not 100% maybe 70% better. The one thing that I think is starting to get through my hard head is it just takes time and I need to take the time to get better to heal.

I would like to also hear how others first realized there was something wrong. To me it seems like a very silent disease that people are not really aware of. (Me included.)

take care
Love
Terry

Hi Terry, For my husband, it was a sore throat that wouldn't go away in Aug, 2004. He went to our regular doctor who gave him antibiotics. Then the doctor sent him to an ENT with a specialty in oral cancer who thought he had thrush. He treated him with some kind of prescription mouthwash formula (twice). His sore throat never got better, he was losing weight, and finally in mid-November his dental hygenist thought she saw something problematic when doing an oral cancer check during a routine teeth cleaning. The dentist took a look and sent him to an oral surgeon who did a biopsy that came back BOT SCC in situ. They sent him back to the ENT (who didn't diagnose it to begin with) who was going to do a 'simple' surgery and release him the same day. By that time, we didn't trust the ENT and went to a nearby CCC. Turned out there was lymph node swelling and the CCC thought he had, maybe, Stage II cancer with a very small BOT lesion and possibly one lymph node. They decided on surgery and radiation, and chemo(which he couldn't have) in mid-February, and after which it was found he had 4 lymph nodes with cancer with some nerve involvement moving him up to Stage IV. By this time, he had lost 25 pounds due the the sore throat problem. (Interestly, he didn't lose any more weight after surgery and treatment.)

The CCC never offered up he could do radiation/chemo without surgery, but maybe that was because the lesion was pretty small. I guess removing large tumors can be problematic.

They were originally going to do a selective neck dissection but that was upgraded to a modified radical neck dissection during the surgery.

Connie

Hi Terry, For my husband, it was a sore throat that wouldn't go away in Aug, 2004. He went to our regular doctor who gave him antibiotics. Then the doctor sent him to an ENT with a specialty in oral cancer who thought he had thrush. He treated him with some kind of prescription mouthwash formula (twice). His sore throat never got better, he was losing weight, and finally in mid-November his dental hygenist thought she saw something problematic when doing an oral cancer check during a routine teeth cleaning. The dentist took a look and sent him to an oral surgeon who did a biopsy that came back BOT SCC in situ. They sent him back to the ENT (who didn't diagnose it to begin with) who was going to do a 'simple' surgery and release him the same day. By that time, we didn't trust the ENT and went to a nearby CCC. Turned out there was lymph node swelling and the CCC thought he had, maybe, Stage II cancer with a very small BOT lesion and possibly one lymph node. They decided on surgery and radiation, and chemo(which he couldn't have) in mid-February, and after which it was found he had 4 lymph nodes with cancer with some nerve involvement moving him up to Stage IV. By this time, he had lost 25 pounds due the the sore throat problem. (Interestly, he didn't lose any more weight after surgery and treatment.)

The CCC never offered up he could do radiation/chemo without surgery, but maybe that was because the lesion was pretty small. I guess removing large tumors can be problematic.

They were originally going to do a selective neck dissection but that was upgraded to a modified radical neck dissection during the surgery.

Connie