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Can my husband die from this?

needhope1
Posts: 29
Joined: May 2009

Ok, you friends have been so helpful thus far. I just met with a friend who said his friend died of tonsil cancer...I don't know the details of this person's cancer, I think my friend didnt want to tell me details because he saw the look on my face when he started talking...

My husband starts chemo tomorrow, I want to ask the doctors again what chances we have for cure rate...initially they said 80% what if my husband falls into the other 20%...will he die? We have a 2 1/2 year old daughter that really needs her Daddy around for many years.

Maybe I am in denial right now, I keep thinking this cancer is "beat-able"...what if it is not? I need my husband in my life.

Can anyone talk me off this ledge I am on? I need help.

Thanks.

cam1234
Posts: 2
Joined: Jun 2009

80% is a great cure rate for any Cancer. If your husband does everything that they ask him to do, he will more than likely be OK. Focus on treatment, nutrition and hydration. I would advise him to get the PEG tube...he will need it. I am 12 weeks post Tx. for SCC tongue with 2 nodes...I am doing great. There is a light at the end of the tunnel...you just have to fight to get there.

Cam

SASH's picture
SASH
Posts: 283
Joined: Apr 2006

I have passed my 9 year anniversary of being NED for stage 4 tongue cancer. It is beatable.

I was given an 85% of recurrence within the first 2 years. That never happened. The longer out you are from treatment, the lower the percentage gets for a recurrence. Frequent followups after treatment as often as the doctors think are necessary.

jtjones56's picture
jtjones56
Posts: 21
Joined: Apr 2008

You have one of the most hopeful posts I have seen on this site. It gives me hope. I had stage 3 base of tongue cancer in late 2007. Finished treatments in Jan. 2008. Have been to all my follow up visits and all has been well. But in March 2009 I had a sore on my tongue that wasn't healing and so they performed a biopsy on it. It came back negative and I was relieved. Last week I had a Petscan, the first one since my treatments I am over a year and half out of treatments and on the petscan it showed a "hotspot" on the same area they had biopsied. Since they had biopsied it in March, they have recommended me to get another Petscan in four months to see if it indicates any changes but nothing until then.

You are so fortunate, have all your petscans been clear since your treatment and have you experienced any soreness on your tongue? The place on my tongue is not sore anymore and I'm praying it is a "false positive" as they call it.

Would just like to hear from you if you have time to respond to me.

Thank you for much and for all your hope you give to all of us.

By the way, you look pretty young in the picture. I am 57 years old.

SASH's picture
SASH
Posts: 283
Joined: Apr 2006

JT,

I've had a few cat scans since surgery. Now they basically do exams by touch and visual exams. Since my cancer was so far advanced when diagnosed, it was basically my entire tongue. The tumor caused my tongue to protrude out of my mouth and beyond my teeth on both sides. My teeth were cutting into it until the Dentist made me my "bunny teeth." This were basically an extension that I was able to put on my front teeth when I would go to bed to try and minimize the damage my tongue would have when I would be asleep and unconsciously would try and sleep with my mouth closed.

I'm guessing that they will do another CAT scan soon as it has been a few years since my last one. But so far, all exams and chest x-rays haven't found any new spots.

There have been a few times that I had "white spots" on my tongue but it turned out to be yeast infections. Now I can self diagnose this and just call the doctor and ask for a prescription for diflucan which clears it up within 2 weeks.

The picture is from college so I was young then. I was diagnosed at 34 and am now 43 and coming up on my 10 year anniversary of diagnosis in September.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

First off, look forward, not backward. He has the disease, he has sought treatment (s) and his Oncology Team has a plan. That's all a done deal. Assuming you trust them 100%, focus on accomplishing everything they propose. Do whatever you have to to complete the treatments. This would include, and certainly not be limited to, the treatment protocol, strict attention to hydration, nutrition, oral hygiene, mouthcare, etc. The PEG I would imagine would be a must.

Back to your original question, I was told about 2 years ago that my success would be based on 1/3 medical technology and 2/3 attitude (mine). Now, in that attitude category comes support from you, the caregiver, a support group (if you don't have one, get one), and of course his personal "get-her-done" mental efforts. If he wants to live to see that 2 1/2 yr. old grow up, and most certainly he does, he will work his backside off to get there.

More specifically, yes, he could die. We all will eventually but we all hope not today and not as the result of a tragic process. A philosopher once said something like "the true meaning of life is that it ends". But, not today.

He'll be fine. Just love him, push him when needed, catch him when he may fall, and constantly remind him and yourself that this is doable, it is beatable and that you have every reason to believe that in the not too distant future you will be giving this same advice to a "newbie" because you beat the demon.

JK

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Well said, very well said.

Take care,

Joe

needhope1
Posts: 29
Joined: May 2009

Thanks for your kind support! It means the world to me.

Bless you!

pmfennell's picture
pmfennell
Posts: 28
Joined: Jun 2009

Hello Needhope1

I am 6 years out from SCC at the base of tongue with 3 nodes removed from the right side of my neck. The statistics gave me a 50/50 shot of being alive this long. First, statistics can be both reliable and unreliable. Remember that EVERY patient is different. No 2 are a like and many things come into play when fighting cancer. The person in your blog that said 2/3 attitude and 1/3 medicine in my humble opinion is correct. I beat this disease because I remained positive in good times and bad. Your husband has a lot of motivation to see his daughter grow up and his family live a long life. No doubt he will have good days and bad. Focus on the good. Put together a good care taking team for you and your family and ask the Docs. any questions you want. Information is a very powerful thing. Yes, your husband will need encouragement on those bad days. But remain focused on tx, following your nutritionists advice. Encourage him to eat, and take in lots of fluids even if he does not want to. Small amounts of food and water are better than none. Swallowing keeps your throat muscles limber and he will need them when he finishes tx. Hang in there, things will get better.
Pete

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Just wondering how your husband is doing. JK

needhope1
Posts: 29
Joined: May 2009

You are so kind to ask how my husband is doing! He has had 2 chemo treatments, then at his 3rd was benched because of low blood counts...I was surprised how quickly his blood counts could be affected by just 2 treatments! He had a blood test last week that showed his counts were good again, so we can begin our battle again - yay!

He has his 3rd chemo tomorrow...will meet with the oncologist as well---I have so many questions for him!

So far my husband's side effects have been minimal, thank goodness. He has been losing his hair, but he is ok with that. He usually feels a bit "out of sorts" 2 days after chemo...he says he just doesnt feel like himself, just kind of crummy, but it is tolerable he tells me.

He is handling this so far like a trouper...hope it continues that way.

Thanks again for asking about him, you are so kind.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Hopefully progressing well. Hang in there................jK

jtjones56's picture
jtjones56
Posts: 21
Joined: Apr 2008

Sash, thank you for your feedback and taking time to read my message.

I do have a recent post on the site that explains my dilemma "Need experience and feedback".

If you want to respond to that also, you can. You are a real icon of hope on this site.

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

I know you are very frightened, but 80% cure rate is great! its too hard to take on the whole 2-5 years that you wait for being in the clear so to speak. One day at a time has never had more meaning than in this situation. The cancer IS beatable. Dont live in the state of
"what if". One day or if you need to do one hour at a time do it. 80% is terrific!!
Remember, dont let the fear keep taking over your good positive thinking. It will want to, alot! But dont let it. Cancer IS VERY beatable.

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