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Base of Tongue cancer

brigboo67's picture
brigboo67
Posts: 24
Joined: Apr 2011

My mom is 65 yrs old. She was just recently diagnosed with Stage 4a squamous cell carcinoma of the base of the tongue. The tumor is 5cmx4cmx2cm and is on the left base of the tongue and extends into the tonsil region (the tonsil was clear). She has been having throat and jaw pain for 3 yrs and has been to the doctor 10 times..she was treated for stress (my dad has been battling renal cell cancer for 3 yrs), high blood pressure (doc said it was her blood pressure receptors in her neck), arthritis of the neck, TMJ and finally after going to a 2nd ENT they found the cancer. The doctors here in Peoria state the tumor is too large for surgery as they say they would have to take the whole tongue. The are wanting to do chemo induction followed by chemo/radiation. My sister and I are wanting her to go to Mayos for a 2nd opinion. She is afraid to put off starting treatment any longer. Has anyone been diagnosed with base of tongue cancer stage 4 and be cured with chemo/radiation alone? The oncologist we saw here said that there is only a 30% cure rate for stage 4 tongue cancer and only 80% response rate with chemo/radiation...My mom is scared and overwhelmed...She has never smoked, drank and the tumor is not HPV+...Any information that can be given would be greatly appreciated.

sabriene
Posts: 27
Joined: Aug 2006

Maybe this will help her spirit a little. I was in about the same situation but maybe just a little worse at the onset. I thought all I had was a cyst on the side of my neck. ENT indicated he could run more test and I said no just remove it and I hopefully I can go home after the out patience surgery. Make a long story short they later claims I should have had problems swallowing but I didn't. It was on both tonsils, and bad like your mother far back on the tongue, and also had to remove a few lymph nodes. I flew after the surgery to get opinions over the country. Bottom line was due to the problem so large at base of tongue they all came to the conclusin best method was rad. & chemo. Maybe one option if it hadn't spread might be robatic laser sugery. However, I would have been the 51 person to have that at the time in the hospital but they came to the conclusion that maybe I should just go back to my area and have the rad. & chemo. Think maybe I read awhile back that Barnes Cancer Center in St. Louis may have the equipment now, and I am thinking that MD Anderson Cancer Center in Houston also is another one. Both of these in my opinion would be my choice for a good second opinion. You no what I didn't no which the doctor told where I got an opinion in Philadephia that usually the tongue does seem to heal pretty well from robatic surgery and this new method has been working pretty well for some. I just had a pet scan last week, and the results shows to sign of any tumors. At this point my suggestions is to just tune out those statistics your hearing for they have really made some advancements in the treatment today. Not saying it is easy but I still think she will do just fine. Roger

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

Siteman Cancer Center at Washington University Barnes Jewish medical Center does have the Trans Oral Robotic Equipment. My ENT is one of only a few who are doing this and trained at Penn, where the equipment was pioneered.

Jason Diaz ENT @ Siteman Cancer Center 314 362-7509.

HE SAVED MY LIFE, I WAS STAGE 4B TONSILL WITH 23 CANCEROUS NODES IN RIGHT SIDE OF NECK.

Best!!

Mike

sabriene
Posts: 27
Joined: Aug 2006

Maybe this will help her spirit a little. I was in about the same situation but maybe just a little worse at the onset. I thought all I had was a cyst on the side of my neck. ENT indicated he could run more test and I said no just remove it and I hopefully I can go home after the out patience surgery. Make a long story short they later claims I should have had problems swallowing but I didn't. It was on both tonsils, and bad like your mother far back on the tongue, and also had to remove a few lymph nodes. I flew after the surgery to get opinions over the country. Bottom line was due to the problem so large at base of tongue they all came to the conclusion best method was rad. & chemo. Maybe one option if it hadn't spread might be robatic laser sugery. However, I would have been the 51 person to have that at the time in the hospital but they came to the conclusion that maybe I should just go back to my area and have the rad. & chemo. Think maybe I read awhile back that Barnes Cancer Center in St. Louis may have the equipment now, and I am thinking that MD Anderson Cancer Center in Houston also is another one. Both of these in my opinion would be my choice for a good second opinion. You no what I didn't no which the doctor told where I got an opinion in Philadephia that usually the tongue does seem to heal pretty well from robatic surgery and this new method has been working pretty well for some. I just had a pet scan last week, and the results shows to sign of any tumors. At this point my suggestions is to just tune out those statistics your hearing for they have really made some advancements in the treatment today. Not saying it is easy but I still think she will do just fine. Roger

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Not sure if a 2nd opinion from Proctor, Methodist or St.Francis, whichever applies, would be the route, but maybe a trip to the Champaign? U of Illlinois also has a major presence in the Rush mega-area in Chicago, so they might need her to go there for the best they can offer. Or St.Louis. Thing is, if it is as you describe- too large for surgery without removal of all the tongue- seems like a 2nd opinion by one of the major centers is definitely in order. U of Iowa is said to have the 4th-best center in the USA, and I know it's a ways away- but it's 74 to 80 west, and then you're there. Would not hesitate- if you are going to get a 2nd opinion- do ASAP, so get on the phone tomorrow.

Hopes and Prayers for her, and you

kcass

brigboo67's picture
brigboo67
Posts: 24
Joined: Apr 2011

The ENT doctor said that Iowa City has a good head and neck center..It would be alot closer than Mayos...Thanks for the info.

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

I wasn't exactly like your mom, but I had BOT cancer with 2 sites in lymph nodes on left side. The stage for me was 2.5-3. I had 36 rads and 6 sessions of chemo, (cisplatin). I am one year out of treatment and have no sign of cancer at all on my last PET scan. What I'm telling you is that this can be beaten, but it is a long road for sure. The cancer is slow growing (I've been told) and there is time for a second opinion, but the protocol seems to be what I had if there is no surgery. I was told I might need a clean up surgery after all was done on the rads and chemo, but I was lucky to not need it.
Your mom has a lot going on besides the new cancer, so try to get her focused and also get her some help. She'll need a care giver to get through this treatment I think, I did. Good luck to you and her as you undertake this treatment. Remember it is a battle that can be won !! Come back here anytime for guidance, we have some great folks here to help out.
All the best to you and yours,
Steve

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

As you'll soon see, there are many former stage four survivors here. I was diagnosed Stage four base of tongue with two lymph nodes involved. Docs said surgery up front was not an option (three different docs). I did induction chemo, then chemo rads. One of the lymph nodes resisted treatment, so nine months after chemo radiation, I had surgery (modified radical neck dissection) to remove the lymph nodes on the rigfht side of my neck. The surgery was in December. My scans earlier this month came out clean - no sign of cancer. I was also not HPV positive.

Surprised doc gave you all survival statistics. I would guess that most of teh stage four people here do not get surgery up front. I, too, was upset about not getting surgery, because I thought my chances of survival would be much better with surgery. Doc's numbers seem low, but I'm no expert. 80% response rate with chemo rads surprises me - just watching the folks here - I would assume the rate was higher. As for the 30% cure rate - well, you know I'm hoping that's low.

You know, you can have scans and reports (and tissue) sent away for second opinion, and not have to travel to have another doc (or group) review your mom's case. Do well.

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Brigboo, I also was a stage 4, scc base of tongue. Surgery was also not recommended in my situation. My treatment was 7 weeks of radiation with 3 concurrent chemo infusions (Cistplatin). I don't have the info on the size of my tumor handy, but I am quite sure it was smaller than your Mom's. Also I didn't have the other med problems (high blood pressure etc).

Regarding 2nd opinions, if you are the least bit unsure, by all means seek out a 2nd even a 3rd opinion if need be. Chances are your Mom will need some dental work before starting the radiation/chemo, so that will provide some time to arrange this.

It seems to me that cure rate percentages vary depending on the MD/Hospital. I was told different numbers (higher) as were others on this site. I do believe that having the chemo along with the rads does increase the odds in your favor as opposed to the rads only.

One thing you will hear again and again on this forum is "everyone is different". Treatment is more difficult for some, easier for others. Ditto the recovery period. But it certainly is doable.

I was initially diagnosed in May of last year. Today I am feeling great and looking forward to a positive result from my upcoming PET/CT scan next month. Cheers.

Jimbo

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Please do get a second opinion. Also, ask for your mother's tumor/biopsy material to be tested for the presence of the HPV virus. (This is the virus that causes cervical cancer) I had base-of-tongue, stage 4, mets to lymph nodes on both sides of my neck, and I was HPV positive. My ENT did do surgeries, while he was trying to diagnose me, and took out one lymph node. No surgery to the tongue. Chemo and radiation resolved everything. Because I was HPV positive, I was told my cure rate was 95%.

Stay positive.

Deb

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

I was diagnosed stage 4 tongue. My tumor was even bigger. The surgical option was to remove 100% of tongue and voice box. Instead they did 46 radiation treatments with simultaneous chemo. Mine was 12 rounds of chemo with the radiation. This was to shrink the tumor to be a manageable size for surgery. Surgery was scheduled to remove 85-90% of my tongue as they felt the tumor was still there.

When they did the deep tissue biopsies all they found was scar tissue and dead cancer cells from the radiation and chemo.

They did take the base of my tongue in the surgery and rebuilt what they had to. I now have a bionic tongue, just kidding.

I am coming up to my 11 year anniversary of surgery on May 1. Treatments have changed some since I went through but that is only because they are finding better ways of doing things.

There are good places in Chicago for treatment, so you don't have to go all the way to Minnesota for the second opinion.

brigboo67's picture
brigboo67
Posts: 24
Joined: Apr 2011

Where did you have your treatment at and did you get more than one opinion?
Do you know which hospital in the Chicago area is good for head and neck?

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

I had treatment in Miami at University of Miami Sylvester Cancer center, which at the time was ranked by US News and World Report at # 35 in the nation for ENT. I think now they have moved up a bit. I felt comfortable with the doctors and the treatment plan that they came up with so I didn't have a second opinion. Since this is a teaching hospital they have access to different treatment plans and trials.

The best thing I can suggest is look at http://www.usnews.com and look at the rankings for hospitals both for cancer and Ear Nose and Throat.

The top three in the Chicago area according to USNEWS are Northwestern, University of Chicago Medical Center, and Rush University Medical Center. They all have specialties in Cancer and ENT, so these might be a good place to start for 2nd opinions.

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

My 70 year old dad was told in March of 2010 that he had stage 4 tongue cancer. They did not recommend surgery because of the size and location. He had 7 weekly chemos of cisplatin while having rads every day for 7 weeks. He finished in June of 2010 and is during great. His last scan showed no cancer. He had an easier time through the treatments then some, but it was still rough.

Please post all of your questions and concerns. This site is what helped my family get through this. Please know that your mom can survive this. My dad also has diabetes and high blood pressure.

Kathy

brigboo67's picture
brigboo67
Posts: 24
Joined: Apr 2011

Thanks Kathy...our obstacle is getting my mom to realize she can survive this. She is sure it is too late and that she is a goner...I have tried to tell her that attitude plays apart in it too...The oncologist. ENT doc and radiologist have all told her the same about attitude..I know she is scared but I want her to get mad and fight this awful disease.

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

Buzz had a base of tongue stage IV with one lymph node positive. We were initially told that surgery was his only option. We went to Mayo's and found out that stage IV tongue cancer is curable and that chemo/radiation are options instead of surgery. Buzz's first PET post treatment showed the tumor to be completely gone! For us, surgery with tongue removal was unthinkable. Get another opinion. BTW, Buzz is 67 and has recovered almost 100% after treatment. He can talk, eat, and feels pretty good.

brigboo67's picture
brigboo67
Posts: 24
Joined: Apr 2011

Did Buzz have the treatment at Mayo or did they tell you the course of treatment and you followed it locally? How much radiation/chemo did Buzz have? Also which chemo did he have?

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