New Cancer Diagnosis Advanced Stage

I just heard from my father's doctor with the results of his biopsy.  He has base of tongue squamous cell carcinoma staged T4 N2C.  Can someone help me understand this more fully?  He begins radiation Thursday, a combination of radiation with "bursts" of chemo.  Radiation will be five days a week for five or six weeks.  Thank you.

Maggie

On 6/12/2007 Memah wrote:

I just heard from my father's doctor with the results of his biopsy.  He has base of tongue squamous cell carcinoma staged T4 N2C.  Can someone help me understand this more fully?  He begins radiation Thursday, a combination of radiation with "bursts" of chemo.  Radiation will be five days a week for five or six weeks.  Thank you.

Maggie

Hi Maggie, I had the exact cancer. I had stage 4 with a huge tumor out the oeft side of my neck, the size of a golf ball. The a smaller one on the right. I had a total left neck disection, 3 months of Cisplatin Chemo and 40 rounds of strong Radiation. Needless to say, they tore me up. It got so bad that half way through, I quit treatment and told them to that i just assume die as take anymore of what i was going through. But i was talked back in to finishing.

 This is a very survivable cancer. I have not met one person that has had anymore trouble after treatment, nor did anyone know of anyone that has dies after having good, successful TX. I am sure there are some though.

You willl get thru this with flying colors. It will not be easy for the first 6 months after treatment. But you will survive!!!!!

If I can help you with anything, let me know.

                                                                Hugs and Smiles, Steven

On 6/30/2007 Steven A.g wrote:

 

On 6/12/2007 Memah wrote:

I just heard from my father's doctor with the results of his biopsy.  He has base of tongue squamous cell carcinoma staged T4 N2C.  Can someone help me understand this more fully?  He begins radiation Thursday, a combination of radiation with "bursts" of chemo.  Radiation will be five days a week for five or six weeks.  Thank you.

Maggie

Hi Maggie, I had the exact cancer. I had stage 4 with a huge tumor out the oeft side of my neck, the size of a golf ball. The a smaller one on the right. I had a total left neck disection, 3 months of Cisplatin Chemo and 40 rounds of strong Radiation. Needless to say, they tore me up. It got so bad that half way through, I quit treatment and told them to that i just assume die as take anymore of what i was going through. But i was talked back in to finishing.

 This is a very survivable cancer. I have not met one person that has had anymore trouble after treatment, nor did anyone know of anyone that has dies after having good, successful TX. I am sure there are some though.

You willl get thru this with flying colors. It will not be easy for the first 6 months after treatment. But you will survive!!!!!

If I can help you with anything, let me know.

                                                                Hugs and Smiles, Steven

Hi Steven.

Thank you so much for your response.  I hope you are doing really well.  Your words are encouraging, but I do have some questions.

1.  If you don't mind, how old are you?  The reason I ask is that my father is 87, and I'm wondering how treatment might affect someone of his age?

2. How much, if any, weight did you lose during treatment?  I am concerned about this because my father at 6' now weighs 141 and continues to lose.  His usual weight is around 190.  Treatment hasn't started yet.  Also, I cannot talk him into eating well.  He is being very cavalier and flippant in attitude when I suggest certain things to help build himself up prior to treatment.     

3. What is treatment really like?  Please tell me all of it.  I'm not afraid to hear it.  I will be judicious in what I share with my father, however.  He is to have seven weeks of radiation and weekly chemo with Erbitux.  I have been told that he will have an injection of Ethyol before each treatment, and that some people tolerate it while others do not.  Do you know anything about Ethyol?

4.  Did you have a feeding tube?  If so, what was that like?  Was it difficult keeping it clean?  How often did you eat?  WHAT did you eat?  How long did one feeding take?  How many feedings were required per day?  Or did you do continuous feeding?

5. Did you have problems swallowing, eating, drinking, speaking, breathing?  Did you have to have a tracheostomy?

My father's radiation oncologist said that he MIGHT have to have a tracheostomy.  He has already been evaluated for the PEG tube, but it hasn't been placed yet.

6.  What kind of dental work did you have to have done before your treatment started?  My father has to have six teeth pulled, and partials made.

7.  What was the hardest part for you?

8.  What gave you hope?

My father is being non-compliant in gearing up for this battle, which of course frustrates me no end.  He is a very difficult person to begin with, but has already become much more so.

Thank you, thank you, and thank you again for your help.

Maggie

On 7/4/2007 Memah wrote:

 

On 6/30/2007 Steven A.g wrote:

 

On 6/12/2007 Memah wrote:

I just heard from my father's doctor with the results of his biopsy.  He has base of tongue squamous cell carcinoma staged T4 N2C.  Can someone help me understand this more fully?  He begins radiation Thursday, a combination of radiation with "bursts" of chemo.  Radiation will be five days a week for five or six weeks.  Thank you.

Maggie

Hi Maggie, I had the exact cancer. I had stage 4 with a huge tumor out the oeft side of my neck, the size of a golf ball. The a smaller one on the right. I had a total left neck disection, 3 months of Cisplatin Chemo and 40 rounds of strong Radiation. Needless to say, they tore me up. It got so bad that half way through, I quit treatment and told them to that i just assume die as take anymore of what i was going through. But i was talked back in to finishing.

 This is a very survivable cancer. I have not met one person that has had anymore trouble after treatment, nor did anyone know of anyone that has dies after having good, successful TX. I am sure there are some though.

You willl get thru this with flying colors. It will not be easy for the first 6 months after treatment. But you will survive!!!!!

If I can help you with anything, let me know.

                                                                Hugs and Smiles, Steven

Hi Steven.

Thank you so much for your response.  I hope you are doing really well.  Your words are encouraging, but I do have some questions.

1.  If you don't mind, how old are you?  The reason I ask is that my father is 87, and I'm wondering how treatment might affect someone of his age?

2. How much, if any, weight did you lose during treatment?  I am concerned about this because my father at 6' now weighs 141 and continues to lose.  His usual weight is around 190.  Treatment hasn't started yet.  Also, I cannot talk him into eating well.  He is being very cavalier and flippant in attitude when I suggest certain things to help build himself up prior to treatment.     

3. What is treatment really like?  Please tell me all of it.  I'm not afraid to hear it.  I will be judicious in what I share with my father, however.  He is to have seven weeks of radiation and weekly chemo with Erbitux.  I have been told that he will have an injection of Ethyol before each treatment, and that some people tolerate it while others do not.  Do you know anything about Ethyol?

4.  Did you have a feeding tube?  If so, what was that like?  Was it difficult keeping it clean?  How often did you eat?  WHAT did you eat?  How long did one feeding take?  How many feedings were required per day?  Or did you do continuous feeding?

5. Did you have problems swallowing, eating, drinking, speaking, breathing?  Did you have to have a tracheostomy?

My father's radiation oncologist said that he MIGHT have to have a tracheostomy.  He has already been evaluated for the PEG tube, but it hasn't been placed yet.

6.  What kind of dental work did you have to have done before your treatment started?  My father has to have six teeth pulled, and partials made.

7.  What was the hardest part for you?

8.  What gave you hope?

My father is being non-compliant in gearing up for this battle, which of course frustrates me no end.  He is a very difficult person to begin with, but has already become much more so.

Thank you, thank you, and thank you again for your help.

Maggie

Hi Maggie,

My husband was recently diagnosed with this exact cancer in Feb. 07. He is 51 years old and the tumor was on the base of his tongue and the size of the tumor was was 5.8cm (very large). It exceeded into the floor of his mouth, down his throat and into the lymp nodes of his neck.  He underwent 16 hours of surgery and had 75% of his tongue removed and another 35% of the base of his tongue removed.They extracted all four of his wisdom teeth and one tooth on the left side after they reconstructed a tongue from a flap off his thigh. He lost 12 lbs while in the hospital.  He is on a g-tube which is a feeding tube in his stomach.  He didn't like being on the canned medical food, so I puree food and liquify it, so he can basically eat what we eat. He is unable to eat anything by mouth. He has had a trach since his surgery in April and is currently 12 treatments into radiation and has had one 10hr. chemotherapy infusion treatment with more to follow.  It has been a very difficult fight for him since the cancer is so advanced. What keeps him fighting is our seven year old daughter as you can imagine.
His doctors have chosen to keep his trach in place until after his radiation treatments because of the severity of his cancer and the length of treatments, radiation can swell the vocal cords and the neck area.  He has not had a lot of that yet but we are very new into this.  We also just learned yesturday that the cancer has gone to his lungs so we are waiting on other treatment options.  Please make sure your father does eat.  The one thing the doctors stressed to my husband was to not lose any weight.  I get him to eat three or four good meals a day.  It has been an extremely hard battle, he had to give up his job and he was always so active, and now he has slowed down and sleeps alot.  If your father has to have a trach and/or a feeding tube don't let that scare you.  The nurses taught me and him how to care for both and those two things really are the least of our worries.   If I can be of any help please let me know.  It has been four months since my husbands diagnosis and two months since his surgery, but I have been educating myself on this type of cancer and asking our doctors lots of questions.  We are told it is a long battle, but we will keep up the fight.

Kathleen

On 7/7/2007 Sunshine96 wrote:

Dear Kathleen,

THANK YOU so much.  I deal best with facts.  First, I am so sorry to hear about your husband's difficulties.  This cancer is nasty, isn't it?  I pray for your family, your husband who has to suffer through this, you, who suffers through it also, and that precious little girl. 

Thank you for your honesty and realism.  I know how important it is to eat and to not lose weight.  This is the battle I am having with my father.  He eats poorly, is still losing weight, and is generally not doing what he could be doing in preparation for radiation and chemo which start one week from today.

I am having a lot of trouble emotionally.  He lives in Arizona and I live in Michigan, so my suggestions are by phone.  He agrees with everything but does very little.  He has a caretaker, but instead of accepting her help and being grateful for her good help, he is very antagonistic toward her.  It's a very untenable situation.

At the least, he is now drinking Boost Plus, but he thinks it's medicine that he has to have daily and that it will "cure" his cancer.  He misinterprets all kinds of information, and he "uses" the cancer, for example, by saying, "I am a very sick man."  Rather than try to adopt a better attitude, he acts very entitled, and people who are there are getting so frustrated with him that they feel like doing less for him rather than more.  This is not a new situation with him.  He's always been rather difficult, even mean and cruel, but now he's worse.

My emotions run the gamut, from feeling truly sad and sorry about his having cancer, to being angry with him for being lackadaisical in his approach to treatment.  I have spoken with his radiation oncologist by phone (as my father has arranged), and he said some people curl up and die because of their attitude, while others suit up for the battle.  Guess who are the ones who do better?  I always thought my father was in the latter category, but it seems now that he is of the former.

You have been helpful by giving me the facts, and I do really appreciate that.  I am tired of my father yelling and screaming at me for no reason, so I have stopped calling him daily as I used to do.  I cannot take his berating me and being so belligerent.  This morning, for example, he called me and complained that his caretaker hadn't done the grocery shopping.  Well, she had.  I don't know why he didn't see the receipt or why he had failed to look in the refrigerator or cabinets.  He expects 100% service all the time, and this person has other clients besides him.  She is his best ally right now and he is alienating her. 

She had ageed to care for the PEG tube so he wouldn't have to hire a nurse.  Now she's so frustrated with him that she isn't going to do this after all.  He'll go ballistic when she tells him, but I don't blame her one bit.  He seems to like conflict more than peace, and this is completely baffling to me.

I know he has a rough road ahead of him, but I wish he would take seriously the recommendations of his doctors and others who are ahead of him educationally on what he is about to go through.  Maybe it's denial.  But the anger he spews out toward almost everyone makes it very, very, VERY unpleasant to be around him whether in person or even on the phone.

Whew, I am venting, I guess.  Sorry.  This monster of a disease causes all kinds of problems.

Remember, I WILL be praying for your family.  And thank you for listening and for your willingness to tell it like it is.  I work best with knowledge, even if that knowledge is hard to take.  I appreciate you for writing, Kathleen.

Maggie

On 7/4/2007 Memah wrote:

 

On 6/30/2007 Steven A.g wrote:

 

On 6/12/2007 Memah wrote:

I just heard from my father's doctor with the results of his biopsy.  He has base of tongue squamous cell carcinoma staged T4 N2C.  Can someone help me understand this more fully?  He begins radiation Thursday, a combination of radiation with "bursts" of chemo.  Radiation will be five days a week for five or six weeks.  Thank you.

Maggie

Hi Maggie, I had the exact cancer. I had stage 4 with a huge tumor out the oeft side of my neck, the size of a golf ball. The a smaller one on the right. I had a total left neck disection, 3 months of Cisplatin Chemo and 40 rounds of strong Radiation. Needless to say, they tore me up. It got so bad that half way through, I quit treatment and told them to that i just assume die as take anymore of what i was going through. But i was talked back in to finishing.

 This is a very survivable cancer. I have not met one person that has had anymore trouble after treatment, nor did anyone know of anyone that has dies after having good, successful TX. I am sure there are some though.

You willl get thru this with flying colors. It will not be easy for the first 6 months after treatment. But you will survive!!!!!

If I can help you with anything, let me know.

                                                                Hugs and Smiles, Steven

Hi Steven.

Thank you so much for your response.  I hope you are doing really well.  Your words are encouraging, but I do have some questions.

1.  If you don't mind, how old are you?  The reason I ask is that my father is 87, and I'm wondering how treatment might affect someone of his age?

2. How much, if any, weight did you lose during treatment?  I am concerned about this because my father at 6' now weighs 141 and continues to lose.  His usual weight is around 190.  Treatment hasn't started yet.  Also, I cannot talk him into eating well.  He is being very cavalier and flippant in attitude when I suggest certain things to help build himself up prior to treatment.     

3. What is treatment really like?  Please tell me all of it.  I'm not afraid to hear it.  I will be judicious in what I share with my father, however.  He is to have seven weeks of radiation and weekly chemo with Erbitux.  I have been told that he will have an injection of Ethyol before each treatment, and that some people tolerate it while others do not.  Do you know anything about Ethyol?

4.  Did you have a feeding tube?  If so, what was that like?  Was it difficult keeping it clean?  How often did you eat?  WHAT did you eat?  How long did one feeding take?  How many feedings were required per day?  Or did you do continuous feeding?

5. Did you have problems swallowing, eating, drinking, speaking, breathing?  Did you have to have a tracheostomy?

My father's radiation oncologist said that he MIGHT have to have a tracheostomy.  He has already been evaluated for the PEG tube, but it hasn't been placed yet.

6.  What kind of dental work did you have to have done before your treatment started?  My father has to have six teeth pulled, and partials made.

7.  What was the hardest part for you?

8.  What gave you hope?

My father is being non-compliant in gearing up for this battle, which of course frustrates me no end.  He is a very difficult person to begin with, but has already become much more so.

Thank you, thank you, and thank you again for your help.

Maggie

Hi Maggie,

My husband was recently diagnosed with this exact cancer in Feb. 07. He is 51 years old and the tumor was on the base of his tongue and the size of the tumor was was 5.8cm (very large). It exceeded into the floor of his mouth, down his throat and into the lymp nodes of his neck.  He underwent 16 hours of surgery and had 75% of his tongue removed and another 35% of the base of his tongue removed.They extracted all four of his wisdom teeth and one tooth on the left side after they reconstructed a tongue from a flap off his thigh. He lost 12 lbs while in the hospital.  He is on a g-tube which is a feeding tube in his stomach.  He didn't like being on the canned medical food, so I puree food and liquify it, so he can basically eat what we eat. He is unable to eat anything by mouth. He has had a trach since his surgery in April and is currently 12 treatments into radiation and has had one 10hr. chemotherapy infusion treatment with more to follow.  It has been a very difficult fight for him since the cancer is so advanced. What keeps him fighting is our seven year old daughter as you can imagine.
His doctors have chosen to keep his trach in place until after his radiation treatments because of the severity of his cancer and the length of treatments, radiation can swell the vocal cords and the neck area.  He has not had a lot of that yet but we are very new into this.  We also just learned yesturday that the cancer has gone to his lungs so we are waiting on other treatment options.  Please make sure your father does eat.  The one thing the doctors stressed to my husband was to not lose any weight.  I get him to eat three or four good meals a day.  It has been an extremely hard battle, he had to give up his job and he was always so active, and now he has slowed down and sleeps alot.  If your father has to have a trach and/or a feeding tube don't let that scare you.  The nurses taught me and him how to care for both and those two things really are the least of our worries.   If I can be of any help please let me know.  It has been four months since my husbands diagnosis and two months since his surgery, but I have been educating myself on this type of cancer and asking our doctors lots of questions.  We are told it is a long battle, but we will keep up the fight.

Kathleen