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#14467 - 08/07/03 02:21 AM husband with tongue cancer
Katya Offline

Registered: 08/06/03
Posts: 5
Loc: AZ
Hello everyone.
My husband was diagnosed with tongue cancer (stage IV) in Feb 03 and since then he has had a part of his tongue removed, with a neck dissection, and 8 weeks of radiation therapy. Now he is recovering, and has many of the side effects that others have written about... dry mouth, lack of taste and appetite, tightness of the neck etc.
Even though his side effects get to him, he is being really optimistic about the overall outcome of this, even though the docs have stated that they can't tell him whether the cancer will come back or not.
There seems to be conflicting info out there on the survival rates of this type of cancer and stage. I have read papers on the internet that place the survival rate as low as 25% (for 5 years), my husband's radiation onchologist says that it is about 60%, my husband's surgeon is way optimistic and won't even give percentages he is so confident in his sugical abilities and seems to imply that my husband will be OK.
This leaves me confused... I know that the number game is not everything and that each person is an individual, but it is difficult to cope with so much uncertainty.
If anyone has any information that they would like to share with me on this topic, I would appreciate it.
Thank you so much for your time,

#14468 - 08/07/03 04:31 AM Re: husband with tongue cancer
karenng Offline
"Above & Beyond" Member (500+ posts)

Registered: 11/25/02
Posts: 541
Loc: Hong Kong
Hi Kilina, too bad you register here but good you have found the right place to share your fear. I am a stage 4 cancer survivor. Two years ago when I was diagnosed, my oncologist did not give me any statistics and I didn't bother to ask because I knew very well, the more I asked, the more frightened I would be. He only said that the team of doctors would try their best to cure me and of course I had to do my part. The battle was half won now and I asked my doctor for how long I can live. A silly question, my doctor said,because even a healthy person doesn't know how long he will live. So I learn to live one day at a time and start not to worry about something beyond my control.

Karen stage 4 tonsil cancer diagnosed in 9/01.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.

#14469 - 08/07/03 10:05 AM Re: husband with tongue cancer
Anita210 Offline
Gold Member (200+ posts)

Registered: 03/18/03
Posts: 246
Loc: Colorado
Kalina, this is an issue that has confused me, also. It is also the source of added anxiety for me - all this conflicting info. My husband also has (had) Stage IV cancer. The very first ENT we saw was VERY optimistic, even before he knew much, beyond the cancer in a large lymph node. He gave us the figure of around 80% survival, which I haven't heard anyone repeat since. Our new ENT hasn't put a number out there, but the oncologist said 65%. Then, just yesterday, husband had his PEG tube removed and the gastrointestinal doc doing that procedure was reassuring - "as awful as the treatment is, it often works." But if you look on the internet, you can read some really dismal statistics. I've decided to quit looking on the internet.

I know I haven't helped you at all, but just wanted you to know that I have similar feelings. I think maybe we just have to learn to live with the unknown.

Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.

#14470 - 08/07/03 01:40 PM Re: husband with tongue cancer
Joanna Offline
Patient Advocate (1000+ posts)

Registered: 03/23/02
Posts: 1140
Loc: Pacific Northwest
Okay, everyone -- listen up!

I was a math major in a long past life and the area of statistics was of particular interest. I can make them say anything anyone wants.

So. Each of us is a particular set of circumstances that is unlike those of any other person. We are only our own statistic! If we seek appropriate treatment in an appropriate time frame, if we follow all recommendations, if we have a positive attitude and faith that we will survive, odds are good that we will.

The oft quoted statistics include those non-compliant patients who continue to smoke and chew and drink, the people who went in with other disease like heart or cirrosis or diabetes, or just advanced age. Also those who have chosen alternative and unproven treatments outside recommended mainstream procedures. All of this has absolutely nothing to do with most of us.

The odds are not good, but I might be run over by a bus tomorrow. The key here, and this is VERY important, is that nobody can see into the future. I repeat: nobody can see into the future. What this means is that to spend time and energy worrying about what you cannot know is to degrade the quality of life. We need to celebrate the fact that we have, for at least a while and perhaps for a very long time, defeated a terrible enemy. Life is for NOW. Life is for LIVING. Life is NOT for obsessing over those things we cannot change.

I am now down off of my soapbox but you can see this is a hot button issue for me. I don't want to see anyone making themselves sick over numbers that mean nothing.

Kalina and Anita, I have been where you are. It took me a week or 10 days to see through the numbers, which shows how upset we can get, because I knew better to start with. Try really hard not to believe in anything except a long and happy life. To do otherwise is to unwisely spend what time we do have.

Joanna, all calmer now (grin)

#14471 - 08/07/03 03:12 PM Re: husband with tongue cancer
Gary Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/27/02
Posts: 3552
Loc: San Francisco CA
Joanna said it all,
My doctor (oncologist) gave me copies of all the NCCN data on survival rates, etc. He knew I would find them anyway. I probably used it to play the sympathy card for a while. As Joanna said we are all different and we are not statistics. It is only natural to do this but has little bearing on reality.

In addition to what Joanna said about the statistics not taking into account health habits, etc., they are also usually several years behind and there are continuing advances in treatment and outcomes.

The bottom line is that each of us must be prepared to die every day and live each day as it is our last. It says in the bible "...not to worry about tomorrow as today has enough troubles of its own".

As Karen said - One day at a time.
And as AA said, you can't change the past and the future is not yours.
Gary Allsebrook
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)

#14472 - 08/07/03 04:08 PM Re: husband with tongue cancer
Joanna Offline
Patient Advocate (1000+ posts)

Registered: 03/23/02
Posts: 1140
Loc: Pacific Northwest
Correction: I have NOT been where you are, Kalina and Anita. I was the patient (stage IV). The caregiver's role is infinitely more difficult and I only meant that the numbers threw me for a loop until I realized what they did NOT mean. My hat is off to you both for the wonderful job you are doing in helping your husbands regain good health. For the record, I am a year out from treatment end (surgery, rad, chemo) and have felt like a million bucks for many months. I run, I play, I do everything I used to do, only with a greater enjoyment. Your husbands will get to where I am too.

#14473 - 08/09/03 08:30 AM Re: husband with tongue cancer

Okay, here's my thoughts...besides the fact I agree with Gary and Joanna... Even if the statistics were accurate and took all the variables into account (which they don't)

Who's to say that your husbands are not in the 20% - to worry and have it become all consuming WILL ruin your life. Please don't do that.

As caregivers you have a tougher road than us patients, but please don't let cancer destroy your family. We are here for all the venting you want to do, there are so many of us that have been in your place or a loved one has.

Remember, "cancer is a word, not a sentence"

Take crae,

#14474 - 08/09/03 11:25 AM Re: husband with tongue cancer
Mark Offline
Patient Advocate (1000+ posts)

Registered: 03/31/03
Posts: 1376
Loc: Minnesota, land of 10,000 taxe...
I'll try to help you with a different thought. The fact that you have had to deal with these thoughts about mortality may just free you to live your life more fully. At your age this may be a real blessing. It will allow you to live each day knowing what is important. Use all your time wisely and enjoy every moment to it's fullest!

To repeat there is NO way anyone knows what statistic your husband will be! Fearing the unknown is a waste of time.

By the way if everyone followed statistics, we would not drive a car.
Mark, 16 Years survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.

#14475 - 08/09/03 08:43 PM Re: husband with tongue cancer
kcdc Offline
Platinum Member (200+ posts)

Registered: 08/25/02
Posts: 246
Loc: Boston, Ma
Just to add to the very wise comments above...

It strikes me that we can't control statistics printed in black and white and control is something caregivers especially seek to reclaim when the cancer bomb has been dropped suddenly.

My fiance, Dave, is coming upon the one year anniversary of his/our diagnosis and treament for Stage III tonsillar cancer this month. Now that I have had some time to process the last several horrifying months, I realize that there were lessons in them I didn't even know I needed like how to be in the moment and celebrate the sheer thrill of being able to be in the company of Dave even if it is over a pizza (which he can now devour again).

I have been in hypervigilant mode for several months ready to throw my body in front of anything perceived as a threat to Dave because I didn't see cancer coming so I tried to overcompensate.Now I know better about how much negative energy that takes. Time is indeed a great healer. I am now able to see Dave first and the scary cancer monster as secondary to our life together, not the ruler of our destiny.

Hang in there,

Wife of Dave,diagnosed with Stage III Tonsillar SCC,August '02
Modified radical neck dissection followed by radiation therapy
'There is glory and radiance in the darkness and to see we have only to look"

#14476 - 08/10/03 12:30 AM Re: husband with tongue cancer
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4734
Loc: Laguna Niguel, CA
You all have said this very well....and for once (someone better make note of this momentous occasion) there is nothing I can add to it. After another day or two for any more follow up posts, this goes into the permanent threads batch!!
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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