my uncle was diagnosed recently with cancer of the tongue and was told that he would lose his entire tongue, pallet and tonsils. he doesn't want to have the surgery because of the severe debilitating effects. of course the only alternative to having this extensive surgery is to go through massive treatments of chemo and radiation. is there anyone here who can provide somewhat of a ray of sunshine on this.

We are not medical experts for the most part just that we have been through much of this. The best suggestion I have, is that your uncle quickly get to a large medical center that deals with this type of cancer frequently. There are people here whom recieved radiation only without surgery and are doing quite well. Of course I have no way to determine if that is an option for him or not. I hate to say it but he will more than likely have to go through the radiation even if he has the surgery.

What ever happens you can come here and talk anytime.

Take care

Lamomma....

I did not have surgery because my ENT doctor said he would have to remove too much tissue. I did have extensive radiation and chemo. My doctor said I had the upper limits of treatment. I am now over a year from my last radiation and 10 months since my last chemo. The most recent CT scan shows no tumor remaining and I feel pretty good considering it all. A lot of people on this board who had less treatment have more issues than I do. Just remember everyone is different, so my experience was mine and is not necessarily what someone else having the same treatment might feel.
Find a good doctor and let him/her tell you what he recommends and if you aren't sure, get a second opinion. Then weigh your decision with what you have heard.

My experience is quite similar to Khaja although I have a different type of cancer. My ENT surgeon advocated surgery to fight against cancer but the team of doctors overseeing my case opted for concurrent radiation and chemotherapy in view of the large size turmors in my tonsil and left neck. Operation would mean involving an extensive area of tissues in both my throat and neck, which would very likely damage my voice and my facial appearance. They planned to shrink the tumors fist and surgery afterwards. I was so lucky that when the treatment was over, all follow up scans did not detect active cancer cells and surgery was therefore unnecessary. I am over 2 years post diagnosis, no one can tell I am a cancer patient from my look. I fully agree with Khaja that everyone is different but getting a second opinion on your uncle's case can be helpful.

Karen stage 4 tonsil cancer diagnosed in 9/01.

I have to chime in with Karen and Khaja. I had radiation and chemo only for reasons mentioned previously. I was a good candidate for this because my tumor was well differentiated and focally invasive. In other words, in spite of late staging, it had not spread to the lymph nodes and was well contained in one specific area. It was a textbook case for IMRT.

I also went to a major comprehensive cancer center for radiation treatment. I sought out one of the top doctors in the world to treat me (she's even listed in the "Americas Top Doctors" book by Castle Connelly). I mention this because I feel strongly about getting the best medical care you can (and you very well may be -maybe I'm speaking more to others reading this thread). For something as seious as a total tongue removal I would at least seek out a competent radiation oncologist for a second opinion.

Did they offer radiation and chemo as an alternative and what was the difference (if any) in the potential outcome. I chose radiation and chemo because there was no difference according to my medical team. It's really all about risk/benefit.

A second opinion from a major cancer center is extremely important. You will see me say this again and again: You owe it to yourself to get the absolute best care you can find. Had I gone with my ENT's intial treatment plan, I would have had surgery that the guys at the major center said I didn't need. Get a second opinion.

-Brett

I was scheduled for surgery today for removal of 1/5 of my tongue as there has been a growth there for over a year, when it was biopsied and was benign. Last week decided to get 2nd opinion from surgeon who did my neck disection. He said no surgery, first biopsy and then MRI. Got results today and it's an infection from having thrush which the knife happy young DR. missed a year ago.I'd strongly suggest a second opinion.
Best wishes to all,

Thanks for all of the replies. My uncle decided against having the surgery. He is going with the chemo and radiation. In fact, they started the treatments yesterday. He is being treated in a hospital in New York called Beth Israel. I have to believe that miracles do happen, but I still worry. Thanks for the support.

Lamomma

Gary, yes the doctor did offer chemo and radiation but they wanted to do the surgery on him. The said that the cancer had not spreaded beyond the oral cavity and they wanted to remove it. One of the doctors said that was the best chance of a cure but they didn't go against doing the chemo radiation thingy. They said that the treatments have worked for some people in the past.

Lamomma

You never mentioned what staging it was. He is taking a bit more of a risk. Many feel that doing all three (surgery, radiation and chemo), has the highest chance of survival. Tongue cancers can be pretty aggressive. They can perform "salvage surgery" later if need be. There are others here who have had radiation and chemo only for tongue cancer and hopefully will add to the conversation. As far as "massive" goes, typically they give the full amount of radiation possible with most head & neck cancers (72Gy). Is he getting IMRT or XRT?

I went to the Beth Israel Continuum website and they offer state-of-the-art treatment. Since he's going to New York for treatment, why didn't he go to Memorial Sloan Kettering -they are the No. 1 comprehensive cancer center in the US.

I had surgery for the removal of tonsil and the left base of my tongue. After surgery i was able to speak well and I could swallow many foods. After 6 weeks I began radiation (no chemo) neither
my ENT surgeon nor my Radiologist felt chemo would be helpful. I am now over 1 year past radiation have difficulty speaking and swallowing. I do not know whether I should have tried radiation and chemo instead of suegery or should have just had the surgery. They removed 10 lymph nodes and one was not clean, that is why I had radiation. These are difficult decisions to make.

The "traditional" standard approach to cancer treatments is a mixture of the old standards of surgery mixed with newer methods. Tumor "debulking" (surgery) as a first step and then radiation to mop up. Chemo is given more to enhance the effects of radiation and offers a small statistical improvement. I know of no chemo that, by itself, offers a cure for SCC.

The idea that radiation alone might offer nearly the same statistical survival rates is fairly new relative to the surgical solutions which have a 100+ years of track record. In addition any treatment plan might be ever so slightly biased by the particular specialty you were consulting with. In otherwords, surgeons tend to know surgery, and radiation oncologists tend to know radiation. This is why the common advice here is to seek a multi-disciplinary medical center for treatment advice. These facilities generally offer the best treatment outcomes.

Another thing to consider is that as cancer staging moves from early stage I to stage IV, the treatment options required to give best long term outcomes change. The points at which the treatment option changes from surgery only to surgery plus radiation, and radiation plus chemo are not sharply defined points. In addition, the staging process relies heavily upon surgery to remove the lymph nodes for pathology testing. This creates a bit of a problem: if you don't do a radical neck dissection then you don't really know the stage, but if you don't know the stage was advanced why do the radical neck dissection? I believe the experience level of your doctors makes the difference here.

I have to beg to differ with Mark about "The idea that radiation alone might offer nearly the same statistical survival rates is fairly new relative to the surgical solutions...". When I worked for Siemens Medical Labs (manufacturer of LINACS) back in the 70's it was well known that radiation often offered a total cure. And I also have to ask, were tumors really being resected on a routine basis in 1904? The truth is that surgeons like to cut and radiation oncologists like to irradiate. This is why a multidisciplinary team is essential (along with a tumor board) to consider the maximum efficacy and statistical odds of any treatment protocol.

Comprehensive cancer centers have the most experience with what brings the highest degree of success.

My resarch has uncovered that most cancer treatment protocols have been developed only in the past 50 years.

I should also mention that Cobalt 60 machines were used (early 50's) before linear accelerators made the scene (and are still used in some parts of the world but rarely found in the United States today). There are some major advantages to using LINAC's vs. Cobalt 60.

The first case of cure of a malignant tumor by radiotherapy alone was reported on a patient with a histologically confirmed squamous cell carcinoma of the nose in 1899. She lived 30 years beyond the treatment.

Head & neck cancers were treated for the first time with radiotherapy in 1932 at the Curie Institute in Paris with curative results.

Beg if you want but I don't see much to differ about.

The first recorded description of a radical neck dissection is 1906. Surgeries to resect cancer in the head and neck go back considerably earlier. The word "routinely" is relative to many variables. But I have a lunch bet that more surgeries were performed over radiation treatments in any time period.

I was not trying to suggest that radiation is still experimental (I don't think I said anything close to that) Since radiation is delivered by very expensive machines, and surgery is much less expensive (from a historical perspective) and since it is still available only regionally, probably the trend is still surgery first then radiation. (that does not mean that is the best way.) Then other risk factors from the treatment need to be considered and added into the mix.

Since I have regularly supported and advocated radiation to be considered as a critical part of SCC treatments, and since I stated the same thing as you about the necessity of multiple expertise, I see virtually no important difference in what we said.

I had a near total glossectomy in Novmeber 2003 followed by radiation/chemo I just finished treatment in January 2004. I went to MD Anderson and got the multi-displinary approach. I also went on young tongue protocol to shrink the tumor, but it actually grew from stage 2 to stage 3, my nodes were negative and PET revealed no other mets. I am having difficulty swallowing and speaking. I'm not sure what I would have done if offered the choice. I sure am unhappy about the outcome of the surgery though. I went in for hemi-glossectomy and almost all of it was removed. My tumor was poorly difined and agressive. I was told that being a non-smoker, non-drinker this is usually the case.

I hope that everything goes well with your father!

Sorry about not responding to any of the messages. I have been in New York with my uncle an awful lot. He decided against surgery and proceeded with chemo and radiation therapy which was going very well until three weeks ago when the port a cath became infected. The infection was so bad that he became very critically ill, multiple organ problems, respiratory disease and some other mess. The doctors were not very optimistic about his condition at all. I went to see him in Newyork Saturday and he is getting ready to go to the step down unit. God is good. They gave him a ten percent chance of surviving three weeks ago. Look at him now. As for the cancer, the raditation oncologist and medical oncologist feel as though the treatment is going very well. The tumor is shrinking greatly. When the infection set in he was in his last week of radiation..bummer. Anyway, I truly believe that God can do all things if only we believe in him and have the faith.

All things are possible through Christ who strengthens me. (Phil 4:13)

God is good, all the time. All the time, God is good! I am glad things are going good and I am so sorry for all you have had to endure and especially what your uncle has had to go through. Thank God he put you in your uncle's path. He is very fortunate to have you.

Ed

Thanks Ed and everyone. My uncle is now in a recovery facility in New York to get physical therapy for his arms and legs. He is expected to make a full recovery. Praise God. He went to see the medical oncologist and he said that the tumor has responded well to the treatment and he does not see a need for future chemo. He has also had an appointment with the radiation oncologist and he said that the same thing. they do want to remove his lymph nodes and put radiation rods into his tongue. The doctors are calling him a walking miracle to still be alive today. God is the chief physician in any hospital room if only we will invite him in to do the work. God has restored all of his bodily functions to their FULL capacity. He was so sick that he could not move a finger(literally). They gave him a 10% chance of surviving the infection (staph in his bloodstream). He is now walking and feeding himself. He has to hold onto to things to walk but therapy is daily. The doctor in the hospital told me that he would be ventilator dependant for the rest of his life. Huh, he isn't even on oxygen. I am so thankful to have been able to be there for my uncle. I wish that each of you have someone dedicated to you as well. I will continue to pray for each of you and for your families as well. God Bless

Lamomma

Lamomma,

It's great to hear about someone responding as well as your uncle has, especially after reading the earlier posts about his condition a few months ago. He's really fortunate that you've been able to help him so much as well.

I hope he continues to a full recovery.

Cathy