My mother has been diagnosed with stage four, squamous cell carcinoma on the tongue. It doesn't look like it spread to the lymph nodes. In a surreal sequence of events, we were told that it was bad and that she would have to have half her tongue removed, her lower jaw bone, a neck dissection...probably would not speak well again, swallow not so great. She's 75, otherwise perfectly healthy and always has been. The alternative to surgery was to go home, die a horrible death in no more than one year's time.

A lot to process but trying to focus on making good decisions. I'm hoping for information from anyone who can help.

1. Has anyone been through this? Was it worth it? Is the quality of life after worth going through the barbaric treatment? What can she expect during the stages of treatment? Will the pain medication alleviate most of the discomfort? Will she be horribly disfigured? Will she be able to speak at all?

If she does nothing, is the process horrible leading to the end? Does anyone know of any alternative to surgery as the first line? Is there anyone in the medical field doing anything innovative? We've been googling Stereotactic body radiation therapy (SBRT)- does anyone have any experience with this?


Thank you so much in advance. I know it's a lot of questions at once - we're desperate for answers. My poor Mom is literally the sweetest lady you could ever possibly meet and I just hate the idea of her going through this.

MGoldstein

Sorry your mum has to deal with this disease. I had a similar diagnosis to your mothers and have had all the treatments you've mentioned, mine had spread to one of my lymph nodes. I've had nearly all of my tongue removed and a flap reconstructed.

If you haven't already, get a 2nd and/or 3rd opinion from a Comprehensive Cancer Centre (CCC). If you do a search here on the forum you will find the lists for centres in the US.

The treatments are tough but they are doable. My speech has improved over time. My jaw bone was rebuilt with bone from my hip. There are others who have had their jaw reconstructed with bone from their leg (fibula).

I also had radiotherapy and chemotherapy, but I don't have any information on SBRT.

Wishing you and your mum all the best

Karen

Hello. So sorry to hear about your mother but glad you have found this site. There are many folks here who have experienced stage 4 and the procedures you mentioned. Am sure they will be of tremendous help to ya.

Thinking you you and your mom!

D

I'm on the same boat as MGoldstein. My mother has also been diagnosed with squamous cell carcinoma (tongue). Her PET Scan and MRI could not determine how far the cancer had spread so she went into the surgery room under anesthesia without knowing what the outcome will be. The Dr. examined her and quickly concluded that she needs chemo and radiation first as the tumor was too big to be removed at that time.

It's been two weeks since then. She will have her first radiation session tomorrow. The FACTS page on this website makes oral cancer at this stage seem a lot scarier (i.e. cure is half the times impossible) than the impressions I've gotten from my mom's doctors. They said that she's in Stage 4 a, still a curable stage, that the tongue responds well to radiation/chemo therapies, and that success rate of treatment is at LEAST 50%, closer to 70-80%. I'm not sure if I'm taking what they said more optimistically than I should for my own sense of reality has shifted.

If her cancer advances to stage 4b, I'm told she will not be cured. How fast do these things advance?

It's all too easy to dwell on the statistics but in my 7 years here I have seen stage IV survivors and early stage deaths. I had a 26% chance of 5 year survival and I'm still here.

There are so many factors that come into play, is it a viral induced tumor (better cure rate) or is it caused by 25 or more years of using tobacco products (poorer cure rate)?. Stage IV almost always includes lymph involvement and possibly local metastesis as well. I would recommend discussing the diagnosis, in depth, with the radiation oncologist to determine the basis of the diagnosis. You will want to know the differentiation of the tumor, it's grade and size.

BOT are agressive tumors and the doctors typically take extreme measures to cure it.

As far as SBRT, I have been unable to find any publications that it is intended for head and neck cancer but that may have changed since the publication of the articles that I accessed. Apparently the advantages of SBRT are that a high dose rate is administered to a precisely targeted area, based on the implantation of markers to keep the beam in correct position even as a result of breathing. Breathing is not an issue with head and neck RT as the area is immobilized by a mask anyway. The treatment sounds similar to IMRT. It is also indicated as a treatment that can be used even after a full dose on conventional RT (or XRT). Both types of radiation are delivered by a medical linear accelerator with the secondary collimation being the primary difference.

You may wish to persue Proton Beam Therapy (PBT) as well. There are not many treatment centers.

We have had people in their 80's survive the treatment.

If it were me I would get a second opinion from Memorial Sloan Kettering if possible, especially since you are in the New York area.

Just wanted to add my vote for an opinion from Sloan also. We have had a great experience with them.
I noticed that one of you is from NYC where their main hospital is. And the other one is from NJ. They have an off shoot office in NJ that deals with head and neck so that might cut down on traveling. But we have found them to be very caring and on top of all the latest possibilities.

Thank you so much for your replies. It seems that my mom's was virally induced since she doesn't drink or smoke. If that's the case, I find the information you've given very encouraging.

I have heard of Memorial Sloan Kettering and its reputation. But my mom's is a charity care patient at a NJ hospital. I'm not sure if we can afford the luxury of going to a new hospital. Thoughts on this aspect?

If directed to me also, I'd like to ask for rationale for a second opinion from Sloan--is that a second opinion on the type of treatment she is getting or diagnosis?

msnoh.....please start your own thread. This way both the original person who posted this and you will both benefit from getting 100% attention and your very own responses.

Splitting the thread is a good idea. I do think where you receive treatment can make a difference. Sloan is not the only Cancer center so more info on where the treatment is now would help.
Why don't you start a new thread or you can message me any questions on Sloan.